Parents of seriously ill children require attention to their spiritual needs, especially during end-of-life care. The objective of this study was to characterize parental attitudes regarding physician inquiry into their belief system.
A total of 162 surveys from parents of children hospitalized for >48 hours in pediatric intensive care unit in a tertiary academic medical center were analyzed. Forty-nine percent of all respondents and 62% of those who identified themselves as moderate to very spiritual or religious stated that their beliefs influenced the decisions they made about their child’s medical care. Although 34% of all respondents would like their physician to ask about their spiritual or religious beliefs, 48% would desire such enquiry if their child was seriously ill. Those who identified themselves as moderate to very spiritual or religious were most likely to welcome the discussion (P < .001). Two-thirds of the respondents would feel comforted to know that their child’s physician prayed for their child. One-third of all respondents would feel very comfortable discussing their beliefs with a physician, whereas 62% would feel very comfortable having such discussions with a chaplain.
The study findings suggest parental ambivalence when it comes to discussing their spiritual or religious beliefs with their child’s physicians. Given that improved understanding of parental spiritual and religious beliefs may be important in the decision-making process, incorporation of the expertise of professional spiritual care providers may provide the optimal context for enhanced parent–physician collaboration in the care of the critically ill child.
Patients with palliative care needs frequently attend the emergency department (ED). There is no international agreement on which patients are best cared for in the ED, compared to the primary care setting or direct admission to the hospital. This article presents the quantitative phase of a mixed-methods service evaluation, exploring the reasons why patients with palliative care needs present to the ED.
This is a single-center, observational study including all patients under the care of a specialist palliative care team who presented to the ED over a 10-week period. Demographic and clinical data were collected from electronic health records.
A total of 105 patients made 112 presentations to the ED. The 2 most common presenting complaints were shortness of breath (35%) and pain (28%). Eighty-three percent of presentations required care in the ED according to a priori defined criteria. They either underwent urgent investigation or received immediate interventions that could not be delivered in another setting, were referred by a health-care professional, or were admitted.
Findings challenge the misconception that patients known to a palliative care team should be cared for outside the ED. The importance and necessity of the ED for patients in their last years of life has been highlighted, specifically in terms of managing acute, unpredictable crises. Future service provision should not be based solely on a patient’s presenting complaint. Further qualitative research exploring patient perspective is required in order to explore the decision-making process that leads patients with palliative care needs to the ED.
The United States is home to 23 million veterans. In many instances, veterans with serious illness who seek healthcare at the VA receive care from a palliative care service. Animal-assisted intervention (AAI) is gaining attention as a therapeutic stress reducing modality; however, its effects have not been well studied in veterans receiving palliative care in an acute care setting. A crossover repeated-measures study was conducted to examine the effects of an animal-assisted intervention (AAI) in the form of a therapy dog on stress indicators in 25 veterans on the palliative care service at the VA Eastern Colorado Healthcare System in Denver, CO. Veterans had a visit from a therapy dog and the dog's handler, a clinical psychologist (experimental condition) and an unstructured visit with the clinical psychologist alone (control condition). Blood pressure, heart rate, and the salivary biomarkers cortisol, alpha-amylase, and immunoglobulin A were collected before, after, and 30-minutes after both the experimental and control conditions. Significant decreases in cortisol were found when the before time period was compared to the 30-minutes after time period for both the experimental (p = 0.007) and control condition (p = 0.036). A significant decrease in HR was also found when the before time period was compared to the 30-minutes after time period for both the experimental (p = 0.0046) and control (p = 0.0119) condition. Results of this study supported that a VA facility dog paired with a palliative care psychologist had a measurable impact on salivary cortisol levels and HR in veterans.
Advance care planning (ACP) is an iterative, complex, and dynamic process of discussion, decision-making, and documentation about end-of-life care. The extent to which this process takes place in older adults in diverse socioeconomic settings is not well documented. The aim of this study was to assess the knowledge, attitudes, and beliefs about ACP among older adults in two socioeconomically diverse settings to identify the individual and contextual factors that influence behaviors regarding end-of-life care.
A cross-sectional survey design was used.
An affordable independent continuing care retirement community and a high-income eligible (HIE) independent continuing care retirement community.
Individuals aged 55 years and older who resided in independent living.
A 61-item survey was administered. Simple descriptive statistics were used to examine the responses, and inferential statistics were used to evaluate which items were associated with key outcomes between the 2 settings.
Seventy-seven older adults completed the survey. Significant differences in familiarity of terminology and knowledge of ACP, as well as significant differences in completion of advance directives and communication, were found between the 2 communities. No differences were found in attitudes and beliefs about end-of-life issues.
Higher levels of knowledge and engagement in ACP were reported at the HIE community as compared to the affordable housing community. These findings provide insight into the influence of the contextual forces that encourage and support ACP.
Infant/child death is described as a most stressful life event; however, there are few reports of effects on parent physical health during the first year after the death. The study’s purpose is to examine the patterns of parent acute illnesses, hospitalizations, and medication changes over 1 to 13 months after neonatal intensive care unit (NICU) or pediatric intensive care unit (PICU) infant/child death in 3 racial/ethnic groups.
Secondary analyses were conducted with longitudinal data on parent health and functioning 1 to 13 months after infant/child NICU/PICU death. Parents (176 mothers, 73 fathers; 44% Hispanic, 35% black non-Hispanic, and 21% white non-Hispanic) of deceased infants/children were recruited from 4 children’s hospitals and state death records. Inclusion criteria—parents understood English or Spanish and had a deceased neonate/child ≤ 18. Exclusion criteria—deceased newborn from multiple gestation pregnancy, child in foster care, child’s injury due to suspected abuse, or parent death in illness/injury event. Parents reported numbers and types of acute illnesses, hospitalizations, and medication changes 1 to 13 months postdeath.
Parents’ acute illnesses, hospitalizations, and medication changes were greatest between months 1 and 6, with relative quiescence in months 7 to 10, and an increase in months 11 to 13. Mothers (aged 32 ± 7.8 years) reported 300 acute illnesses (primarily colds/flu, headaches, anxiety/depression, and infections) and 89 hospitalizations (primarily infections, chest pain, and gastrointestinal problems). Fathers (aged 37 ± 8.8 years) reported 104 acute illnesses (colds/flu and headaches) and 9 hospitalizations.
After infant/child NICU/PICU death, mothers had greater morbidity than fathers, with no significant differences by race/ethnicity. Parents’ health needs to be monitored in months 1 to 6 and months 11 to 13, and interventions targeted to parents in these months.
To map and describe the geographic distribution of pediatric hospice care need versus supply in California over a 4-year time period (2007-2010).
Multiple databases were used for this descriptive longitudinal study. The sample consisted of 2036 children and adolescent decedents and 136 pediatric hospice providers. Geocoded data were used to create the primary variables of interest for this study—need and supply of pediatric hospice care. Geographic information systems were used to create heat maps for analysis.
Almost 90% of the children and adolescents had a potential need for hospice care, whereas more than 10% had a realized need. The highest density of potential need was found in the areas surrounding Los Angeles. The areas surrounding the metropolitan communities of Los Angeles and San Diego had the highest density of realized hospice care need. Sensitivity analysis revealed neighborhood-level differences in potential and realized need in the Los Angeles area. Over 30 pediatric hospice providers supplied care to the Los Angeles and San Diego areas.
There were distinctive geographic patterns of potential and realized need with high density of potential and realized need in Los Angeles and high density of realized need in the San Diego area. The supply of pediatric hospice care generally matched the needs of children and adolescents. Future research should continue to explore the needs of children and adolescents at end of life at the neighborhood level, especially in large metropolitan areas.
Many patients live with serious chronic or terminal illnesses. Multicomponent palliative care interventions have been increasingly utilized in patient care; however, it is unclear what is being implemented and who is delivering these interventions.
To (1) describe the delivery of multicomponent palliative care interventions, (2) characterize the disciplines delivering care, (3) identify the components being implemented, and (4) analyze whether the number of disciplines or components being implemented are associated with positive outcomes.
Systematic review.
English-language articles analyzing multicomponent palliative care interventions.
Delivery of palliative interventions by discipline, components of palliative care implemented, and number of positive outcomes (eg, pain, quality of life).
Our search strategy yielded 71 articles, which detailed 64 unique multicomponent palliative care interventions. Nurses (n = 64, 88%) were most often involved in delivering care, followed by physicians (n = 43, 67%), social workers (n = 33, 52%), and chaplains (n = 19, 30%). The most common palliative care components patients received were symptom management (n = 56, 88%), psychological support/counseling (n = 52, 81%), and disease education (n = 48, 75%). Statistical analysis did not uncover an association between number of disciplines or components and positive outcomes.
While there has been growth in multicomponent palliative care interventions over the past 3 decades, important aspects require additional study such as better inclusion of key groups (eg, chronic obstructive pulmonary disease, end-stage renal disease, minorities, older adults); incorporating core components of palliative care (eg, interdisciplinary team, integrating caregivers, providing spiritual support); and developing ways to evaluate the effectiveness of interventions that can be readily replicated and disseminated.
Dying is a natural process, yet physicians are often uncomfortable caring for dying patients. Learners have limited exposure to curriculum on caring for dying patients and often navigate these encounters without appropriate skills and confidence. We developed and implemented the Double Parallel Curriculum in Palliative Care (DP-PC): End-of-Life (EOL) module. The DP-PC focuses on teaching third-year medical students (MS3) to not only take care of patients in their last hours of life but give learners the confidence to teach patient’s families what to expect as they hold vigil at their loved one’s bedside.
To develop and implement an educational intervention that improves learners’ knowledge and confidence in EOL patient and family care. To expand learner confidence to a dual level (learners become teachers) with a simplified and culturally sensitive electronic bedside teaching tool designed to guide learners and patients/families conversations.
Curriculum was completed during MS3 ambulatory rotation and included pre-/posttests, an online case-based module, faculty demonstration, and learner role-play using the bedside teaching tool.
A total of 247 participants took the pretest, 222 participants took the posttest, and 222 participants matched the pre-/posttest surveys. Students’ knowledge of EOL care and the confidence to teach other learners and families about EOL care significantly improved after completing the curriculum.
The DP-PC is a technology-savvy educational intervention that improves learner confidence and knowledge toward caring for dying patients and their families. Easy access, technology-based teaching tools may enhance bedside teaching of health-care learners and improve the care of patients and their families at the end of life.
Associations of perceived health and social and physical activities with end-of-life (EOL) issues have been rarely studied, not to mention racial disparities in such associations. To address this gap, this study examined racial differences in the associations of perceived health and levels of social and physical activities with advance care planning, EOL concerns, and knowledge of hospice care among community-dwelling older adults in Alabama. Data from a statewide survey of 1044 community-dwelling older adults on their long-term care needs were analyzed using descriptive statistics and logistic and linear regressions. Results showed that black older adults were less likely to know about or document advance care planning and to have accurate knowledge of hospice care; however, despite their poorer perceived health, black older adults reported fewer EOL concerns. Higher levels of perceived health and social and physical activities were associated with knowledge about advance care planning among white older adults but not among black older adults. Both black and white older adults with poorer perceived health and lower levels of social and physical activities tended to have more EOL concerns and less knowledge of hospice care. These findings suggest that interventions to address suboptimal levels of perceived health and social and physical activities among black older adults may increase knowledge of advance care planning. Also, supportive services to address EOL concerns should be targeted at older adults with poorer perceived health and limited participation in social and physical activities.
Delirium complicates pain assessment and management in advanced cancer. This retrospective cohort study compared health-care workers’ (HCWs) cancer pain judgments between older patients with advanced cancer with and without a diagnosis of delirium. We reviewed HCWs’ daily chart notations about pain presence and good pain control in 149 inpatients with advanced cancer, ≥65 years of age, admitted to a palliative care inpatient unit. Any day with 1 or more notations of pain presence was counted as 1 day with pain; days with notation(s) indicating good pain control were similarly counted. Proportions of days that HCWs judged inpatients to have pain and good pain control were calculated. Patients with and without a delirium diagnosis were compared on both pain outcomes. The moderating effect of highest analgesic class administered was examined. Although most patients received opioid analgesics, mean proportions of days with judged pain were high (39%-60%) and mean proportions of days with judged good pain control were low (<25%) across groups. Among patients receiving either opioid or nonopioid medication, patients with delirium demonstrated lower proportions of days with judged good pain control than patients without delirium (P ≤ .001), even though groups did not differ in proportions of days with judged pain (P = .62). Cancer pain is difficult to manage in advanced cancer, especially when delirium is present; however, misinterpretation of delirium symptoms as pain cues may inflate pain judgments. Findings require replication but suggest the need for better pain assessment in older patients with advanced cancer and delirium.
We undertook a retrospective review of a subset of expired patients at our community hospital to evaluate end-of-life care patterns and the use of advanced care planning tools among patients who died in the hospital. These 162 expired patients fell into 1 of the 3 diagnosis-related groups of cardiac, respiratory, or infectious disease. Seventy-nine percent of patients arrived to the hospital with no requested limitations in the extent of resuscitative efforts, even though 98% of all patients had major or extreme severity of illness and risk of mortality scores. The presence of an advance directive requesting a limitation of resuscitative efforts modestly impacted resources and procedures, even though utilization in this group was high. Among the 21% of patients with preexisting limits, 21% requested more aggressive support during their course. Critical care unit utilization was seen in 69% of patients for a median of 48 hours. A request for palliative care consultation was received in 44% of patients but only occurred in 30% of all patients due to the short period between the consultation request and patient death (median 37 hours). Among this group of dying patients, engagement of the palliative care team came too late in the course of many patients, suggesting that automated tools embedded in the electronic medical record might be helpful in the identification of appropriate patients earlier.
The discontinuation of life sustaining medical treatment (LSMT) in severely and permanently impaired neonates, especially artificial nutrition and hydration (ANH) is subject to uncertainty and controversy. Definitive clinical guidelines are lacking, clinical research is limited, ethical disagreement is commonplace, and while case and statutory law provide legal underpinning for the practice in defined circumstances, uncertainty in this realm likely influences clinical practice. We use the case of a neurologically devastated neonate to highlight and review these arenas, and show how, using available legal, ethical, and clinical standards and practice, the case of Baby O was resolved, and to underline the need for further research in neonatal palliative care.
Few educational interventions have been developed to teach Family Meeting (FM) communication skills at the undergraduate level. We developed an innovative curriculum to address this gap.
Fourth year medical students during 2011-2013 (n = 674) completed training for conducting a FM. To assess the effectiveness of this training, students completed a FM Objective Structured Clinical Exam (OSCE) that included 15 domains rated on a 1-5 point Likert scale. Tasks included discussing prognosis, establishing goals of care and demonstrating conflict resolution skills. Students received one-to-one feedback from standardized family members and faculty observers. Group debriefings with faculty were held after the OSCE.
Analysis of faculty feedback narratives revealed four themes in which students required improvement: 1) Discussing prognosis, 2) Explaining palliative care/hospice, 3) Avoiding medical jargon, and 4) Discussing cultural/religious preferences. Evaluation total mean score was 28.2 (Min 15, Max 63; SD 7.57), and identified student’s need to; 1) Ask more about the degree of knowledge family members want, 2) Ask religious beliefs, and 3) Assess family members’ level of education (p < 0.001). Qualitative analysis of group debriefings suggested that student perception of the OSCE experience was positive overall. Students found the case to be realistic and immediate feedback to be helpful.
Conducting a FM is an advanced skill. This study shows that it is possible to train fourth year students to lead FMs and identify their strengths, needs using a FM OSCE.
The purposes of the present study were (1) to explore the completion rate of advance directives (ADs) in a sample of Asian Americans and (2) to examine the direct and moderating effects of knowledge of AD, education, and acculturation in predicting AD completion. Education and acculturation were conceptualized as moderators in the link between knowledge and completion of ADs.
Using data from 2609 participants in the 2015 Asian American Quality of Life survey (aged 18-98), logistic regression analyses on AD completion were conducted, testing both direct and moderating effects.
The overall AD completion rate in sample was about 12%. The AD knowledge and acculturation independently predicted AD completion. No direct effect of education was found; however, it interacted with AD knowledge. The AD knowledge was more likely to be translated into completion in the group with higher education.
The AD completion rate observed in the present sample of Asian Americans was much lower than that of the US general population (26%-36%). The interactive role of education helps to explain the gap between AD knowledge and completion and suggests intervention strategies.
Diphenhydramine (DPH) is most commonly used via oral, topical, intramuscular (IM) and intravenous (IV) routes for the palliation of pruritus, treatment of extrapyramidal symptoms, management of parkinsonism and for allergic reactions. However, many hospice patients are unable to take oral medications and/or do not have IV access. Moreover, topical administration has a relatively slow rate of absorption. For this reason, in the hospice setting it is not uncommon for diphenhydramine to be administered via the subcutaneous (SC) route secondary to its ease of access, low infection rates and its low levels of discomfort. In contrast, outside the hospice setting, subcutaneous DPH has not been widely used, primarily because of a handful of case reports published in the 1990's that report skin necrosis following subcutaneous administration of DPH for local anesthesia. Since these early case reports, however, there has been very little in the way of research to examine this further. The aim of this study is to provide objective data concerning the safe use of subcutaneous diphenhydramine, as part of our efforts to improve upon safe practices in our organization.
This is a retrospective review of records from 6 of our inpatient hospice units obtained from our pharmacy database for patients who received at least one subcutaneous injection of diphenhydramine between 2012-2015. Selected patients were then subsequently screened for post-administration skin necrosis, as recorded in our quality assurance database during the same time period.
A total of 648 diphenhydramine subcutaneous injections were administered in109 individual patients. None of the patients were reported to have an adverse cutaneous reaction.
This retrospective review demonstrates that subcutaneous diphenhydramine injection is a safe alternative to oral and other parenteral routes, and may be particularly valuable in terminally ill patients, who are often unable to swallow and are without IV access.
Interprofessional health care team members consider advance care planning (ACP) to be important, yet gaps remain in systematic clinical routines to support ACP. A clearer understanding of the interprofessional team members’ perspectives on ACP clinical routines in diverse settings is needed.
One hundred eighteen health care team members from community-based clinics, long-term care facilities, academic clinics, federally qualified health centers, and hospitals participated in a 35-question, cross-sectional online survey to assess clinical routines, workflow processes, and policies relating to ACP.
Respondents were 53% physicians, 18% advanced practice nurses, 11% nurses, and 18% other interprofessional team members including administrators, chaplains, social workers, and others. Regarding clinical routines, respondents reported that several interprofessional team members play a role in facilitating ACP (ie, physician, social worker, nurse, others). Most (62%) settings did not have, or did not know of, policies related to ACP documentation. Only 14% of settings had a patient education program. Two-thirds of the respondents said that addressing ACP is a high priority and 85% felt that nonphysicians could have ACP conversations with appropriate training. The clinical resources needed to improve clinical routines included training for providers and staff, dedicated staff to facilitate ACP, and availability of patient/family educational materials.
Although interprofessional health care team members consider ACP a priority and several team members may be involved, clinical settings lack systematic clinical routines to support ACP. Patient educational materials, interprofessional team training, and policies to support ACP clinical workflows that do not rely solely on physicians could improve ACP across diverse clinical settings.
There is an emerging literature on the physician competencies most meaningful to patients and their families. However, there has been no systematic review on physician competency domains outside direct clinical care most important for patient- and family-centered outcomes in critical care settings at the end of life (EOL). Physician competencies are an essential component of palliative care (PC) provided at the EOL, but the literature on those competencies relevant for patient and family satisfaction is limited. A systematic review of this important topic can inform future research and assist in curricular development.
Review of qualitative and quantitative empirical studies of the impact of physician competencies on patient- and family-reported outcomes conducted in accordance with the Preferred Reporting Items for Systematic reviews and Meta-Analyses guidelines for systematic reviews. The data sources used were PubMed, MEDLINE, Web of Science, and Google Scholar.
Fifteen studies (5 qualitative and 10 quantitative) meeting inclusion and exclusion criteria were identified. The competencies identified as critical for the delivery of high-quality PC in critical care settings are prognostication, conflict mediation, empathic communication, and family-centered aspects of care, the latter being the competency most frequently acknowledged in the literature identified.
Prognostication, conflict mediation, empathic communication, and family-centered aspects of care are the most important identified competencies for patient- and family-centered PC in critical care settings. Incorporation of education on these competencies is likely to improve patient and family satisfaction with EOL care.
An initial and vital important step in recruiting participants for church-based hospice and palliative care research is the establishment of trust and credibility within the church community. Mistrust of medical research is an extremely important barrier hindering recruitment in African American (AA) communities. A church-based EOL dementia education project is currently being conducted at four large urban AA churches. Church leaders voiced mistrust concerns of previous researchers who conducted investigations in their faith-based institutions. We explored strategies to ameliorate the mistrust concerns.
To identify trust-rebuilding elements for researchers following others who violated trust of AA church leaders.
Face-to-face, in-depth interviews were conducted from a convenient sample of four established AA church leaders. Interviews were held in the informants’ churches to promote candor and comfort in revealing sensitive information about trust /mistrust. Content analysis framework was used to analyze the data. Elements identified from the analysis were then used to create themes.
Multidimensional overarching themes emerged from the analysis included: Experience with researchers (positive and extremely negative), violation of trust and trust building strategies.
Findings suggest that researchers who wish to conduct successful studies in the AA religious institutions must implement trust rebuilding strategies that include mutual respect, collaboration and partnership building. If general moral practices continue to be violated, threat to future hospice and palliative care research within the institutions may prevail. Thus, potential benefits are thwarted for the church members, AA community, and advancement of EOL care scholarship.
This investigation explored the relationship between hospice patient disease type, length of stay (LOS) in hospice, and caregiver utilization of grief counseling in bereavement. A 10-year retrospective study was conducted utilizing data from caregivers associated with hospice patients who died between 2004 and 2014. A threshold of inclusion for disease type (≥1.00% of hospice admissions) resulted in a sample size of 3704 patients, comprising 19 different disease types and 348 associated caregivers who received counseling. Replicating a previous study, brain cancer, lung cancer, and renal failure were among the top 4 disease types associated with higher-than-average utilization of bereavement services among caregivers, regardless of the patient’s LOS. This finding may be related to factors such as the duration of the disease, the deterioration of the patient, the absence of symptom control, and secondary losses. LOS as a predictor of whether counseling will be utilized by hospice caregivers was unsupported by this study, as the percentage of caregivers receiving counseling closely paralleled the patient’s LOS across 4 cohorts (1-30 days, 31-60 days, 61-90 days, and 91+ days). However, among the caregivers who utilized counseling, the LOS was a statistically significant predictor of the number of counseling sessions utilized. For caregivers who utilized only 1 counseling session, the associated patient median LOS was 21.5 days. For caregivers who utilized 5 or more counseling sessions, the associated patient median LOS dropped to 12 days, suggesting an inverted relationship between hospice patient LOS and the duration of counseling in bereavement.
Nurse–patient conversations about pain management are complex. Given recent increases in prescription pain pill abuse, such interactions merit scholarly attention. In-depth interviews with 21 nurses were conducted to explicitly explore nurses’ information seeking about pain. The participants in this study gathered pain information from patients through a variety of means and reported facing challenges and dilemmas when communicating with patients about pain management and medicinal preferences. These results have important implications for nurses, patient outcomes, and the broader health-care system and imply that continued educational and intervention efforts are essential in this complicated communicative context.
To investigate how a terminal illness may affect the health-care providers’ resuscitation preferences.
We conducted a cross-sectional survey in 9 health-care institutions located in 4 geographical regions in North and Central America, investigating attitudes toward end-of-life practices in health-care providers. Statistical analysis included descriptive statistics and 2 test for the presence of associations (P < 0.05 being significant) and Cramer V for the strength of the association. The main outcome measured the correlation between the respondents’ present code status and their preference for cardiopulmonary resuscitation (CPR) in case of terminal illness.
A total of 852 surveys were completed. Among the respondents, 21% (n = 180) were physicians, 36.9% (n = 317) were nurses, 10.5% (n = 90) were medical students, and 265 participants were other staff members of the institutions. Most respondents (58.3%; n = 500) desired "definitely full code" (physicians 73.2%; n = 131), only 13.8% of the respondents (physicians 8.33%; n = 15) desired "definitely no code" or "partial support," and 20.9% of the respondents (n = 179; among physicians 18.4%; n = 33) had never considered their code status. There was an association between current code status and resuscitation preference in case of terminal illness (P < .001), but this association was overall quite weak (Cramer V = 0.180). Subgroup analysis revealed no association between current code status and terminal illness code preference among physicians (P = .290) and nurses (P = .316), whereupon other hospital workers were more consistent (P < .01, Cramer V = .291).
Doctors and nurses have different end-of-life preferences than other hospital workers. Their desire to undergo CPR may change when facing a terminal illness.
There is an increasing demand for quality palliative care teaching within undergraduate medical education. Studies suggest that many junior doctors feel underprepared to perform end-of-life care. Previous systematic reviews on palliative care teaching within medical schools have identified significant variability and lack of consistency in teaching. This review aims to update the literature on the current status of palliative care teaching to undergraduates within medical schools.
A systematic review was undertaken on articles published from December 2001 to November 2015 on palliative care teaching for undergraduate medical students. In all, 650 abstract citations were obtained, of which 126 were relevant to the research questions. Thematic analysis was performed on remaining articles according to whether they discussed content and/or methodology of palliative care education, and data collated.
There is greater consistency in the content being delivered as part of end-of-life care education within medical schools. The most frequently taught topics include attitudes to death and dying, communication skills, and pain management. Pediatric care and religious/cultural issues are less frequently addressed. Teaching institutions are also utilising a broader range of teaching modalities.
There is significant progress in palliative care education within medical schools. Ongoing challenges relate to correlating our current practice in medical education to professional recommendations and the expressed needs of junior doctors to practice competent end-of-life care.
Physician burnout raises concerns over what sustains physicians’ career motivations. We assess whether physicians in end-of-life specialties had higher rates of burnout and/or calling to care for the dying. We also examined whether the patient centeredness of the clinical environment was associated with burnout.
In 2010 to 2011, we conducted a national survey of US physicians from multiple specialties. Primary outcomes were a validated single-item measure of burnout or sense of calling to end-of-life care. Primary predictors of burnout (or calling) included clinical specialty, frequency of encounters with dying patients, and patient centeredness of the clinical environments ("My clinical environment prioritizes the need of the patient over maximizing revenue").
Adjusted response rate among eligible respondents was 62% (1156 of 1878). Nearly a quarter of physicians (23%) experienced burnout, and rates were similar across all specialties. Half of the responding physicians (52%) agreed that they felt called to take care of patients who are dying. Burned-out physicians were more likely to report working in profit-centered clinical environments (multivariate odds ratio [OR] of 1.9; confidence interval [CI]: 1.3-2.8) or experiencing emotional exhaustion when caring for the dying (multivariate OR of 2.1; CI: 1.4-3.0). Physicians who identified their work as a calling were more likely to work in end-of-life specialties, to feel emotionally energized when caring for the dying, and to be religious.
Physicians from end-of-life specialties not only did not have increased rates of burnout but they were also more likely to report a sense of calling in caring for the dying.
Untrained family caregivers struggle with complicated medical management regimens for hospice patients. An intervention was tested to improve caregiver’s perception of pain management and patient’s pain.
The intervention was tested with a 2-group (usual care vs intervention) randomized controlled trial using parallel mixed-methods analysis of 446 caregivers in 3 Midwestern hospice programs representing rural and urban settings.
Web conferencing or telephones were used to connect caregivers with the hospice care team during care plan meetings.
Caregiver’s perceptions of pain management were the primary outcome. Secondary outcomes included caregiver quality of life, patient’s pain, and anxiety. Video recordings, field notes, and caregiver and staff interviews provided qualitative data.
The overall perception of pain management was not changed by the participation in hospice team meetings. Perceptions of fatalism improved for intervention participants, and the intervention participants perceived their patients’ pain was better controlled than those in the control group. The intervention was found to be feasible to deliver in rural areas. Caregiver’s anxiety and patient’s pain were correlated (r = .18; P = .003), and subanalysis indicated that caregivers of patients with cancer may benefit more from the intervention than other hospice caregivers. Qualitative analyses provided understanding of caregiver’s perceptions of pain, cost, and facilitators and barriers to routine involvement of family in care plan meetings.
The hospice philosophy is supportive of caregiver involvement in care planning, and technology makes this feasible; the intervention needs modification to become translational as well as additional measurement to assess effectiveness. Caregiver education and emotional support should occur outside the meeting, and a strong leader should facilitate the meeting to control efficiency. Finally, the intervention may benefit caregivers of patients with cancer more than others.
Work in hospice and palliative medicine can be stressful. A variety of methods have been used to mitigate workplace stress including mindfulness mediation, reflective writing, and physical activity. An intervention implemented at our institution is a "Thought for the Day," a short reflection on a piece of poetry, music, or religious writing. Although this practice may be commonplace in the field of hospice and palliative medicine, no literature has been published about its perceived utility by team members with various competing demands on their time.
This study’s objective was to obtain a better understanding about the perception and utility of a Thought for the Day held by clinicians rounding on an academic palliative medicine consult service.
A survey, containing qualitative and quantitative elements was sent to faculty, staff, and learners who participated in a Thought for the Day over the 18 months between March 2013 and October 2014. Twenty-eight responses were returned and analyzed.
Most participants (23 of the 28) felt that the Thought for the Day was an important use of their time on the academic consult service. Differences were seen by gender and team role. Additionally, it was reported that the Thought for the Day improved the participants’ perception of teamwork.
The use of a Thought for the Day reflection may be beneficial and constructive even for a busy academic consult service.
Over 10% of hospice patients experience at least 1 care transition 6 months prior to death. Transitions at the end of life, particularly from hospice to hospital, result in burdensome and fragmented care for patients and families. Little is known about factors that predict hospitalization in this population.
To develop and validate a model predictive of hospitalization after enrollment into home hospice using prehospice admission risk factors.
Retrospective cohort study using Medicare fee-for-service claims.
Patients enrolled into the Medicare hospice benefit were ≥18 years old in 2012.
Hospitalization within 2 days from a hospice discharge.
We developed a predictive model using 61 947 hospice enrollments, of which 3347 (5.4%) underwent a hospitalization. Seven variables were associated with hospitalization: age 18 to 55 years old (adjusted odds ratio [95% confidence interval]: 2.94 [2.41-3.59]), black race (2.13 [1.93-2.34]), east region (1.97 [1.73-2.24]), a noncancer diagnosis (1.32 [1.21-1.45]), 4 or more chronic conditions (8.11 [7.19-9.14]), 2 or more prior hospice enrollments (1.75 [1.35-2.26]), and enrollment in a not-for-profit hospice (2.01 [1.86-2.18]). A risk scoring tool ranging from 0 to 29 was developed, and a cutoff score of 18 identified hospitalized patients with a positive predictive value of 22%.
Reasons for hospitalization among home hospice patients are complex. Patients who are younger, belong to a minority group, and have a greater number of chronic conditions are at increased odds of hospitalization. Our newly developed predictive tool identifies patients at risk for hospitalization and can serve as a benchmark for future model development.
Medical providers may face unique emotional challenges when confronted with the suffering of chronically ill, dying, and bereaved children. This study assessed the preliminary outcomes of participation in a group-based multimodal mindfulness training pilot designed to reduce symptoms of burnout and mental health symptoms in providers who interact with children in the context of end-of-life care.
A total of 13 medical providers who care for children facing life-threatening illness or bereaved children participated in a 9-session multimodal mindfulness session. Mental health symptoms and burnout were assessed prior to the program, at the program midpoint, and at the conclusion of the program.
Participation in the pilot was associated with significant reductions in depressive and posttraumatic stress disorder (PTSD) symptoms among providers (P < .05).
Mindfulness-based programs may help providers recognize and address symptoms of depression and PTSD. Additional research is needed to enhance access and uptake of programming among larger groups of participants.
Despite evidence that enrollment with hospice services has the potential to reduce hospital readmission rates, previous research has not examined exactly how hospitals may promote the appropriate use of hospice and palliative care for their discharged patients. Therefore, we sought to explore the strategies used by hospitals to increase the use of hospice and palliative care for patients at risk of readmission.
We conducted a secondary analysis of qualitative data from a study of hospitals that were participating in the State Action on Avoidable Readmissions (STAAR) initiative, a quality improvement collaborative. We used data attained from 46 in-depth interviews conducted during 10 hospital site visits using a standard discussion guide and protocol. We used a grounded theory approach using the constant comparative method to generate recurrent and unifying themes.
We found that a positive effect for hospitals participating in the STAAR initiative was enhanced engagement in efforts to promote greater use of hospice and palliative care as a possible method of reducing unplanned readmissions, the central goal of the STAAR initiative. Hospital staff described strategies to increase the use of hospice and palliative care that included (1) designing and implementing tracking systems to identify patients most at risk of being readmitted, (2) providing education about hospice and palliative care to family, internal and external clinical groups, and (3) establishing closer links to posthospital settings.
National efforts to reduce rehospitalizations may result in improved integration of hospice and palliative care for patients who are at risk of readmission.
The objectives of this study were to examine (1) the extent to which hospice palliative care volunteers are involved in program and patient/family advocacy, (2) volunteers’ willingness to engage in program and patient/family advocacy, and (3) volunteers’ perceived needs for training on how to be an effective advocate. Thirty-four hospice palliative care volunteers responded to the survey developed for this study. The majority of the volunteers surveyed consider themselves advocates for their programs and many of those, who have not already done so, would be willing to promote their program (eg, give a community presentation, talk to local media) if asked. Half of the volunteers were aware of unmet needs of the patients/families they supported, and just over one-third wanted to advocate on behalf of their patients/families but did not know what to do or where to go. Recommendations for volunteer training are made.
Volunteers are important in the support of frail older adults requiring palliative care, especially in rural areas. However, there are challenges associated with volunteer supports related to training, management and capacity to work in partnership with healthcare providers (HCP). This review addresses the question: What is the feasibility of a volunteer-HCP partnership to support frail older adults residing in rural areas, as they require palliative care?
This integrative review identified ten articles that met the identified search criteria. Articles were appraised using the Critical Appraisal Skills Programme (CASP) checklists, designed for use across a range of quantitative and qualitative studies.
Studies were drawn from international sources to understand how volunteer roles vary by culture and organization; the majority of studies were conducted in North America. Studies varied in methodology, including quantitative, qualitative and educational commentary. Identified factors that were crucial to the feasibility of volunteer-HCP partnerships in rural areas included volunteer training dynamics, relationships between volunteers and HCP, and rural environmental factors.
Preliminary evidence indicates that a volunteer-HCP palliative partnership is feasible. However, training policies/procedures, volunteer-HCP relationships, and rural specific designs impact the feasibility of this partnership. Additional research is needed to further establish the feasibility of implementing these partnerships in rural settings.
Palliative sedation for refractory existential distress (PS-ED) is ethically troubling but potentially critical to quality end-of-life (EOL) care. Physicians’ in postgraduate training support toward PS-ED is unknown nor is it known how empathy, hope, optimism, or intrinsic religious motivation (IRM) affect their support. These knowledge gaps hinder efforts to support physicians who struggle with patients’ EOL care preferences.
One hundred thirty-four postgraduate physicians rated their support of PS for refractory physical pain (PS-PP) or PS-ED, ranked the importance of patient preferences in ethically challenging situations, and completed measures of empathy, hope, optimism, and IRM. Predictors of PS-ED and PS-PP support were examined using binary and multinomial logistic regression.
Only 22.7% of residents were very supportive of PS-ED, and 82.0% were very supportive of PS-PP. Support for PS-PP or PS-ED did not correlate with levels of empathy, hope, optimism, or IRM; however, for residents with lower IRM, greater optimism was associated with greater PS-ED support. In contrast, among residents with higher IRM, optimism was not associated with PS-ED support.
Comparing current results to published surveys, a similar proportion of residents and practicing physicians support PS-ED and PS-PP. In contrast to practicing physicians, however, IRM does not directly influence residents’ supportiveness. The interaction between optimism and IRM suggests residents’ beliefs and characteristics are salient to their EOL decisions. End-of-life curricula should provide physicians opportunities to reflect on the personal and ethical factors that influence their support for PS-ED.
The primary objective of this quality improvement (QI) project was to determine if the Interdisciplinary Palliative Care Outpatient Clinic (IPCOC) at the West Palm Beach Veterans Affairs Medical Center offered improved symptom assessment and palliative care treatment outcomes. Secondary objectives were to identify, classify, and resolve medication problems and calculate the number of pharmacist recommendations accepted by prescribing providers.
An IPCOC was created by selecting disciplines for a core group including a nurse practitioner, clinical pharmacist, social worker, chaplain, and physician. Consult referrals were recruited by providing educational sessions. The patient assessments were completed using the Edmonton Symptom Assessment System: (revised version; ESAS-R). The clinical pharmacist classified and resolved drug-related problems. The pharmacy resident telephoned veterans for completion of the "Patient Assessment: Overall Satisfaction with Outpatient Palliative Care Clinic."
Seventeen consults were received, 6 patients were excluded, and 11 were seen in clinic. One (9%) of 11 patients met the outcomes measure of system assessment documentation in the past year. At completion, 11 (100%) of 11 patients met the outcomes data measure. The Patient Satisfaction Assessment revealed veterans strongly agree to recommend the IPCOC. The clinical pharmacist identified 20 drug-related problems, made 16 recommendations, had a 93.7% implementation rate, and facilitated implementation of medication changes.
This QI project demonstrates that an IPCOC improved symptom assessment and palliative care outcomes in addition to resolution of medication prescribing issues in veterans with advanced cancer by integration of a clinical pharmacist into the core team.
This study expands current knowledge of factors associated with initiation of hospice care by examining prehospice patterns of medical care leading to Medicare hospice use and the relationships to hospice episode characteristics. Data from the Atherosclerosis Risk in Communities (ARIC) study cohort offer the ability to control for measures that are not available in Medicare claims data, including marital status, nursing home residency, and education. For 1248 ARIC participants who used hospice (2006-2012), participant level trends in the number of hospital days per 30-day period over the year prior to hospice initiation were generated using a fixed-effects model. Logistic regression was used to estimate the associations between increasing hospital use over the year prior to hospice enrollment with key patient characteristics (diagnosis, age, and comorbidity) and episode characteristics (short hospice stay ending in death, long hospice stay, and live discharge). Participants with severe comorbidity (measured as a Charlson comorbidity index score greater than 5) had higher odds of increasing hospital use prior to hospice (odds ratio [OR] = 3.28, confidence interval [CI] = 2.25-4.78). Increasing hospital use did not vary by diagnosis but was associated with reduced odds of a live hospice discharge (OR = 0.55, CI = 0.34-0.88) or long stay in hospice (OR = 0.44, CI = 0.24-0.79) and increased odds of a short stay in hospice (OR = 1.92, CI = 1.36-2.71). The evidence that care patterns prior to hospice use are associated with hospice outcomes could facilitate development of interventions to improve timely hospice referral.
Emergency admissions and emergency department visits (EAs/EDVs) have been used as quality indicators of home care in terminally ill cancer patients. We established a cancer transitional care (CTC) program to monitor and manage terminally ill cancer patients receiving care at home. The purpose of this study was to evaluate the effectiveness of CTC by the frequency of EAs/EDVs.
In a retrospective chart review, we identified 133 patients with cancer admitted to our department, of whom 56 met study eligibility criteria. The CTC consisted of at least 1 or more following components: (1) a 24-hour hotline for general physicians or home care nurses to reach hospital-based physicians, (2) periodic phone calls from an expert hospital-based oncology nurse to home care medical staff, and (3) reports sent to our department from home care medical staff. The primary outcome variable was the frequency of EAs/EDVs.
There were 32 EAs/EDVs and 69 planned admissions during the observation period. In the last 30 days of life, 16 patients (28.6%) had 1 EA/EDV and none had multiple EAs/EDVs. Compared with previous studies, our study found a similar or lower frequency of EAs/EDVs.
Our findings suggest that the implementation of CTC reduces the number of EAs/EDVs by replacing them with planned admissions. Further prospective studies to evaluate CTC are warranted.
Delirium is common in home hospice patients and conveys significant morbidity to both patients and caregivers. The Delirium Observation Screening Scale (DOS) was developed to improve delirium recognition but has yet to be validated in the home hospice setting.
This pilot study aimed to explore the accuracy of the DOS for identifying delirium in home hospice patients.
Prospective delirium evaluation using a convenience sample.
Community hospice patients were approached for study inclusion.
Participants were assessed using the Delirium Rating Scale–Revised–98 (DRS-R-98), with results being categorized as "delirium" or "no delirium." The Delirium Observation Screening Scale scores, completed by hospice nurses during weekly patient assessment visits, were compared to the DRS-R-98 results.
Within this population, 30/78 (38%) assessments were categorized as delirious. In the majority of assessments, 69/75 (92%), the DRS-R-98 and DOS provided congruent results. There were 5 false positives and 1 false negative, demonstrating the DOS to be a clinically useful tool with a sensitivity of 0.97 and specificity of 0.89.
The DOS appears to be an accurate way to screen for delirium in home hospice patients. Validation of the DOS may help to improve delirium recognition and treatment and has the potential to increase quality of life in this vulnerable population. This input will also be taken into consideration in the development of a systematic screening procedure for delirium diagnosis at our local hospice, which we hope will be generalizable to other hospice agencies.
Advance care planning (ACP) involves several behaviors that individuals undertake to prepare for future medical care should they lose decision-making capacity. The goal of this study was to assess whether playing a conversation game could motivate participants to engage in ACP.
Sixty-eight English-speaking, adult volunteers (n = 17 games) from communities around Hershey, Pennsylvania, and Lexington, Kentucky, played a conversation card game about end-of-life issues. Readiness to engage in 4 ACP behaviors was measured by a validated questionnaire (based on the transtheoretical model) immediately before and 3 months postgame and a semistructured phone interview. These behaviors were (1) completing a living will; (2) completing a health-care proxy; (3) discussing end-of-life wishes with loved ones; and (4) discussing quality versus quantity of life with loved ones.
Participants’ (n = 68) mean age was 51.3 years (standard deviation = 0.7, range: 22-88); 94% of the participants were caucasian and 67% were female. Seventy-eight percent of the participants engaged in ACP behaviors within 3 months of playing the game (eg, updating documents, discussing end-of-life issues). Furthermore, 73% of the participants progressed in stage of change (ie, readiness) to perform at least 1 of the 4 behaviors. Scores on measures of decisional balance and processes of change increased significantly by 3 months postintervention.
This pilot study found that individuals who played a conversation game had high rates of performing ACP behaviors within 3 months. These findings suggest that using a game format may be a useful way to motivate people to perform important ACP behaviors.
The need for end-of-life (EOL), high-impact education initiatives to prepare medical students to communicate with dying patients and their families and to cope with issues of death and dying, is well recognized.
Third-year medical students (n = 224), during their ambulatory rotation, completed a multimedia EOL curriculum, which included pre-/posttests, an online case-based module, didactic presentation, and a tablet computer application designed to demonstrate the signs and symptoms seen in the last hours of life for families of dying patients. Pre- and posttests were compared using Pearson 2 or Fisher exact test, and improvement was measured by weighted coefficient.
On preintervention surveys, the majority of students demonstrated positive attitudes toward the care of dying patients and their families. Despite this high pretest positive attitude, there was a statistically significant overall positive attitude change after the intervention. The lowest pretest positive attitudes and lowest posttest positive attitude shifts, although all statistically improved, involved addressing the thoughts and feelings of dying patients and in coping with their own emotional response.
Medical students exposure to this multimedia EOL curriculum increases positive attitudes in caring for dying patients and their families.
The nation faces a persistent issue of delayed access to hospice care. Even though hospice enrollment is considered to be one of the most difficult medical decisions, physician clinics and hospitals lack tools for helping patients/families faced with making decisions about enrollment. Health-care literature lacks discussion of development of decision-making aids in the context of hospice decisions for minority ethnic groups, even though those groups have decisional needs that may differ from those of non-Hispanic whites. To fill the gap, we developed a video of a Latino hospice patient with footages showing how the patient was being taken care of by her family with support from a hospice disciplinary team. A primary objective of this article is to describe how focus groups, existing decision aids, and individual interviews were used to develop and improve a Spanish-language hospice educational video targeting Latino subgroups with linguistic, cultural, and educational barriers. These steps may provide guidelines for developing and revising health-related videos targeting other minority ethnic groups.
Effective approaches to teaching attitudes, knowledge, and skills to resident physicians in primary care that can be implemented in any residency program are needed. We examined the feasibility and impact of a single palliative care residency curriculum, including a clinical rotation with a hospice program, across 5 cohorts of residents in 7 divergent primary care residency programs (both family medicine and internal medicine). The didactic content was drawn from the national Education for Physicians on End-of-Life Care Project. A total of 448 residents completed the curriculum. A large effect size was seen in measures of knowledge change (*Cohen d = .89) when compared to a national sample of primary care residency programs. Additionally, measures of confidence to perform palliative care skills and ethical concerns also improved significantly (P < .001). A frequent comment is wishing the rest of medicine were like that experienced in the hospice setting. In a separate, ancillary evaluation, the average length of stay of patients enrolled in hospice care was 18.5 days longer for the alumni of this program when compared to physicians referring for hospice care who hadn’t experienced the curriculum.
To explore the frequencies and intensities of depressive symptoms associated with hospitalized patients with advanced cancer.
A total of 196 hospitalized patients with advanced cancer were surveyed with the Edmonton Symptom Assessment System and Self-Rating Depression Scale (SDS). The 2 test and Wilcoxon rank-sum test were used to compare the frequency and intensity of symptoms between patients with and without depressive disorders. Spearman rank correlation was used to test the correlation between depression and symptoms.
Of the 196 enrolled patients, 115 (59%) were males. The median age of the patients was 58 (19-80) years. Seventy-six (39%) patients were diagnosed with depression (SDS ≥ 53). Patients with depressive disorders exhibited pain, drowsiness, and nausea along with a higher frequency and intensity of poor self-perception, appetite loss, anxiety, dyspnea, and fatigue. Depressive symptoms were positively correlated with the symptoms.
Depressive disorders are very common and severe in hospitalized patients with advanced cancer. Identifying the frequencies and intensities of the symptoms enables early intervention to improve patients’ quality of life.
Administration of chemotherapy and radiotherapy near the end of life is a frequently discussed issue nowadays. We have evaluated the factors associated with the use of chemotherapy and radiotherapy at the end of life among terminally ill patients in China.
This study included the data from patients who had died from advanced cancer who underwent palliative chemotherapy and radiotherapy between January 2007 and December 2013 at the Department of Palliative Care of Fudan University, Shanghai Cancer Center. Data were collected from hospital medical records. Univariate and multivariate analyses were conducted to identify the factors independently associated with the use of chemo- and radiotherapy.
Among the 410 patients included (median age, 68 years; range, 18-93; 53% males), 47 (11.5%) underwent palliative chemotherapy and 28 (6.8%) underwent radiotherapy in the last 30 days. Age <65 years (odds ratio [OR]: 1.33, 95% confidence interval [CI]: 1.06-2.88), performance status <3 (OR: 3.95; 95% CI: 1.56-5.07), and cardiopulmonary resuscitation (OR: 4.09, 95% CI: 2.66-5.34) were independently associated with the use of chemotherapy. Performance status <3 (OR: 4.06, 95% CI: 2.17-5.83) and cardiopulmonary resuscitation (OR: 5.28, 95% CI: 3.77-7.21) were independently associated with the use of radiotherapy.
The findings indicate that younger patients with a lower performance status who do not have complications are more likely to opt for chemo- or radiotherapy. Further, the use of palliative chemo- and radiotherapy should be considered carefully in terminally ill patients with cancer, as they seem to indicate a higher risk of cardiovascular complications requiring resuscitation.
The Centers for Medicare & Medicaid Services (CMS) recently instituted physician reimbursements for advance care planning (ACP) discussions with patients.
To measure public support for similar programs.
Cross-sectional online and in-person surveys.
English-speaking adults recruited at public parks in Philadelphia, Pennsylvania, from July to August 2013 and online through survey sampling international Web-based recruitment platform in July 2015. Participants indicated support for 6 programs designed to increase advance directive (AD) completion or ACP discussion using 5-point Likert scales. Participants also indicated how much money (US$0-US$1000) was appropriate to incentivize such behaviors, compared to smoking cessation or colonoscopy screening.
We recruited 883 participants: 503 online and 380 in-person. The status quo of no systematic approach to motivate AD completion was supported by 67.0% of participants (63.9%-70.1%). The most popular programs were paying patients to complete ADs (58.0%; 54.5%-61.2%) and requiring patients to complete ADs or declination forms for health insurance (54.1%; 50.8%-57.4%). Participants more commonly supported paying patients to complete ADs than paying physicians whose patients complete ADs (22.6%; 19.8%-25.4%) or paying physicians who document ACP discussions (19.1%; 16.5%-21.7%; both P < .001). Participants supported smaller payments for AD completion and ACP than for obtaining screening colonoscopies or stopping smoking.
Americans view payments for AD completion or ACP more skeptically than for other health behaviors and prefer that such payments go to patients rather than physicians. The current CMS policy of reimbursing physicians for ACP conversations with patients was the least preferred of the programs evaluated.
Physicians’ lack of comfort and skill in communicating about hospice care results in deficits and delays in hospice referrals. Preclinical exposure to hospice may lay a foundation to improve medical students’ knowledge and comfort with hospice care.
To understand how preclinical medical student (MS)-2s respond both educationally and emotionally to a required hospice care experience (HCE).
Accompanied by hospice clinicians, MS-2s spent 3 hours seeing inpatient or home hospice patients followed by a 1-hour debriefing. Students submitted written reflections to e-mailed educational and emotional prompts.
Two hundred and two MS-2s from 2 academic cohorts completed the HCE at 1 of 2 hospice sites.
Written reflective responses were analyzed qualitatively, where salient themes extracted and responses were coded.
Ninety-two students submitted 175 responses to Prompt #1 (educational impact) and 85 students entered 85 responses to prompt #2 (emotional impact) of the HCE. Eleven themes were identified for prompt #1, most frequently focusing on hospice services and goals and hospice providers’ attitudes and skills. Prompt #2 elicited a diverse spectrum of emotional responses, spanning positive and negative emotions. Most often, students reported "no specified emotional reaction," "sad/depressed," "difficult /challenging," "heartened/encouraged," and "mixed emotions."
In an HCE, preclinical students reported learning core aspects of hospice care and experiencing a broad spectrum of emotional responses. These findings may assist educators in the planning of HCEs for preclinical students, including debriefing sessions with skilled clinicians and opportunities for triggered reflection.
Symptom and Quality of Life (QOL) data are important patient reported outcomes. Early identification of these is critical for appropriate interventions. Data collection may be helped by modern information technology.
This study examined symptoms and QOL in people with solid tumors at their first visit to a medical oncologist. We also evaluated the clinical utility of tablet computers (TC) to collect this data.
This was a prospective study of 105 consecutive patients in the cancer outpatient clinic of a tertiary level academic medical center. Symptom and QOL data was collected by TC with wireless database upload.
One-third participants had moderate to severe pain; almost half clinically significant pain that interfered with daily activities. Tiredness, anxiety, and drowsiness were common (prevalence - 79%, 63% and 50% respectively). One-third of those who had items identified from the Edmonton System Assessment System also volunteered other symptoms, mostly gastrointestinal problems. Many of those affected also reported impaired Global Wellbeing and low Overall QOL. There was a 98% completion rate, which took on average ten minutes. Direct observation and informal feedback from patients and physicians regarding the acceptability of TC in this setting was uniformly positive.
Amongst people with newly diagnosed solid tumors clinically important psychological and physical symptoms, QOL problems and difficulties with daily activities were commonly present in the 24-hour period and in the week before a first Medical Oncology visit. Symptom and QOL data collection by TC in busy outpatient clinics showed good clinical utility.
The administration of chemotherapy at the end of life is considered an aggressive life-prolonging treatment. The use of unnecessarily aggressive therapy in elderly patients at the end of life is an important health-care concern.
To explore the impact of palliative care consultation (PCC) on chemotherapy use in geriatric oncology inpatients in Japan by analyzing data from a national database.
We conducted a multicenter cohort study of patients aged ≥65 years, registered in the Japan National Administrative Healthcare Database, who died with advanced (stage ≥3) lung, stomach, colorectal, liver, or breast cancer while hospitalized between April 2010 and March 2013. The relationship between PCC and chemotherapy use in the last 2 weeks of life was analyzed using 2 and logistic regression analyses.
We included 26 012 patients in this analysis. The mean age was 75.74 ± 6.40 years, 68.1% were men, 81.8% had recurrent cancer, 29.5% had lung cancer, and 29.5% had stomach cancer. Of these, 3134 (12%) received PCC. Among individuals who received PCC, chemotherapy was administered to 46 patients (1.5%) and was not administered to 3088 patients (98.5%). Among those not receiving PCC, chemotherapy was administered to 909 patients (4%) and was not administered to the remaining 21 978 patients (96%; odds ratio [OR], 0.35; 95% confidence interval, 0.26-0.48). The OR of chemotherapy use was higher in men, young–old, and patients with primary cancer.
Palliative care consultation was associated with less chemotherapy use in elderly Japanese patients with cancer who died in the hospital setting.
To examine the relationship between nurse knowledge, work environment, and registered nurse (RN) turnover in perinatal hospice and palliative care organizations.
Using nurse intellectual capital theory, a multivariate analysis was conducted with 2007 National Home and Hospice Care Survey data.
Perinatal hospice and palliative care organizations experienced a 5% turnover rate. The professional experience of advanced practice nurses (APNs) was significantly related to turnover among RNs (β = –.032, P < .05). Compared to organizations with no APNs professional experience, clinical nurse specialists and nurse practitioners significantly reduced RN turnover by 3 percentage points. No other nurse knowledge or work environment variables were associated with RN turnover. Several of the control variables were also associated with RN turnover in the study; Organizations serving micropolitan (β = –.041, P < .05) and rural areas (β = –.037, P < .05) had lower RN turnover compared to urban areas. Organizations with a technology climate where nurses used electronic medical records had a higher turnover rate than those without (β = .036, P < .05).
The findings revealed that advanced professional experience in the form of APNs was associated with reductions in RN turnover. This suggests that having a clinical nurse specialist or nurse practitioner on staff may provide knowledge and experience to other RNs, creating stability within the organization.
Adults with chronic critical illness (CCI) frequently experience a terminal trajectory but receive varying degrees of palliation and end-of-life care (EOLC) in intensive care units (ICUs). Why palliation (over curative treatment) is not augmented earlier for patients with CCI in ICU is not well understood.
To identify the social structures that contribute to timely, context-dependent decisions for transition from acute care to EOLC for patients with CCI and their families.
We conducted a meta-synthesis of qualitative and/or mixed-method studies that recruited adults with CCI, their families or close friends, and/or health-care providers (HCPs) in an ICU environment.
Five studies reported data from 83 patients, 109 family members, and 57 HCPs across 5 institutions in Canada and the United States. Overall, we found that morally ambiguous social expectations of treatment tended to lock in HCPs to focus on prescriptive work of preserving life, despite pathways that could "open" access to augmenting palliation and EOLC. This process limited space for families’ reflexivity and reappraisal of CCI as a phase liminal to active dying. Notably, EOLC mechanisms were informal and less visible.
The management of dying is one of the central tenets of ICU care. Our findings suggest that patients and families need help in negotiating meanings of this situation and in using mechanisms that allow reappraisal and permit understanding of CCI as a phase liminal to dying. Moreover, these mechanisms may paradoxically reduce the ambiguity of patients’ future, allowing them to live more fully in the present.
Advance care planning (ACP) is an instrumental mechanism aimed at preserving patient autonomy. Numerous interventions have been proposed to facilitate the implementation of ACP; however, rates of completed advance directives (ADs) are universally low. Patient electronic portal messaging is a newer tool in patient–provider communication which has not been studied as a method to promote ACP. In this study, we hypothesized that the use of ACP-specific patient electronic messages would increase rates of AD completion in patients aged 65 years and older in an academic primary care practice.
All primary care patients, aged 65+, who had previously enrolled in a patient electronic messaging system, within an academic primary care practice, were included for randomization. Two hundred patients were randomized to receive an electronic message. The primary outcome was the proportion of patients in each group who completed an AD, 3 months after intervention. Secondary outcomes included clinical utility of the completed ADs and proportion of patients who viewed their electronic messages.
The intervention group completed an AD 5.5% of the time when compared to 2% in the control group (odds ratio 3.2 [1.6-6.3]). Up to 74.5% of patients opened their electronic messages.
Among primary care patients aged 65 years and older, use of AD-specific electronic messaging statistically significantly increased the rate of AD completion, but the absolute number of completed AD remained relatively low. These data suggest that this valuable communication tool holds opportunities for further improvement. Older, frailer adults were more likely to complete an AD, and prompted directives were more likely to include a written expression of the individual’s health-care values and preference.
Despite all the investment in research, uncertainty persists in anticipatory grief (AG) literature, concerning its nuclear characteristics and definition. This review aimed to synthesize recent research in order to develop further knowledge about the family experience of AG during a patient’s end of life. An integrative review was performed using standard methods of analysis and synthesis. The electronic databases Medline, Web of Knowledge, and EBSCO and relevant journals were systematically searched since 1990 to October 2015. Twenty-nine articles were selected, the majority with samples composed of caregivers of terminally ill patients with cancer. From systematic comparison of data referring to family end-of-life experience emerged 10 themes, which correspond to AG nuclear characteristics: anticipation of death, emotional distress, intrapsychic and interpersonal protection, exclusive focus on the patient care, hope, ambivalence, personal losses, relational losses, end-of-life relational tasks, and transition. For the majority of family caregivers in occidental society, AG is a highly stressful and ambivalent experience due to anticipation of death and relational losses, while the patient is physically present and needed of care, so family must be functional and inhibit grief expressions. The present study contributes to a deeper conceptualization of this term and to a more sensitive clinical practice.
Seizures in patients with glioblastoma are associated with worse quality of life. However, their incidence, clinical characteristics, and prognostic implications are less well characterized.
This study was undertaken to provide a contemporary experience along with benchmark data relevant to the above in patients with glioblastoma. It also sought to reexplore improved survival with seizures, as observed by others.
In this single-institution study, patients with glioblastoma from 2010 through 2014 had their medical records reviewed in detail.
Among 122 patients, 58 (48%) had a seizure history. Of these, 67% had more than 1, 41% had generalized seizures, and most received antiseizure medication (most commonly levetiracetam). The median survival for patients with seizures was 1.66 years and 0.87 years for those without (hazard ratio for risk of death with seizures: 0.72; 95% confidence interval: 0.43, 1.21; P = .22 by the log-rank test).
Seizures are common in patients with glioblastoma and, in contrast to earlier reports, are not associated with a statistically significant improvement in survival.
This article describes the development of a bereavement assessment framework for the Western Australia Country Health Service Palliative Care Services bereavement program. The framework is grounded in a clearly articulated evidence base, integrating research from the bereavement field that has informed the development of a standardized assessment framework referred to as the bereavement common assessment framework (B-CAF). The B-CAF identifies the many facets of experiences of the bereaved, creating a holistic and contextual assessment and providing professionals with a tool to enhance assessment and intervention practices. The palliative–curative model of care has also been reconceptualized to recognize that earlier interventions may mitigate adverse outcomes in bereavement. This framework may have implications for further research and service delivery of bereavement support programs.
Oral thrush is a common fungal infection of the mouth experienced by palliative medicine and hospice patients who have advanced cancer. Individuals often experience distressing symptoms that affect their oral intake with most regimens adding to pill burden. This is an open-label prospective observational study to assess the efficacy of a single-dose fluconazole 150 mg for oral thrush.
Palliative medicine and hospice patients with a clinical diagnosis of oral thrush, a life expectancy of more than 1 week, and were able to swallow were enrolled. Signs and symptoms were evaluated on day 1 prior to administration of 150 mg of fluconazole and between days 3 to 5 after treatment.
Of 57 patients, 55 (96.5%) had more than 50% improvement in signs and symptoms. Both the number and severity of symptoms changed significantly posttreatment (P < .001). Side effects were few.
Single-dose fluconazole 150 mg is an effective treatment of oral thrush for individuals with advanced cancer.
Knowledge of health-related quality of life (QoL) of patients with multiple myeloma on disease-modifying treatments is limited.
(1) Determine symptom prevalence in patients with multiple myeloma on disease-modifying treatment. Identify the range and nature of these symptoms within the dimensions of physical, psychological, social, and financial well-being. (2) Measure self-reported QoL. (3) Compare the above-mentioned parameters to the general population and patients with advanced cancer.
Adults with multiple myeloma on disease-modifying treatment, attending the hematology day unit in a tertiary referral center from November 2012 to January 2013, were eligible for inclusion in a cross-sectional quantitative survey. Consenting patients completed 2 validated questionnaires, the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Core 30 (EORTC QLQ-C30) supplemented by the myeloma-specific module (EORTC QLQ-MY20) and the Hospital Anxiety Depression Score (HADS).
Forty-one patients were included for analysis: 59% were male and 41% were female. Mean age was 63.7 years (range 46-86, standard deviation 11.24). The QoL scores were significantly lower than the general population and comparable to those with advanced cancer. The most commonly reported physical symptoms were pain (66%), fatigue (63%), and dyspnea (51%). About 54% of the patients were burdened by financial worries. Anxiety (30%) and depression (37%) were prevalent.
Patients with myeloma on disease-modifying treatment have a lower QoL than the general population and are symptomatic across physical, psychological, financial, and social domains. A holistic approach to patient care is warranted, and patients may benefit from specialist palliative care input.
This article describes the whole picture of Japan HOspice and Palliative Care Evaluation Study 3 (J-HOPE3 Study) including study design and demographic data. The aims of the J-HOPE3 study were to (1) evaluate the process, structure, and outcome of palliative care in the following care settings: acute hospitals, inpatient hospice/palliative care units (PCUs), and home hospice services; (2) examine bereaved family members’ self-reported psychosocial conditions, such as grief and depression, as bereavement outcomes; (3) provide data to ensure and improve the quality of care provided by participating institutions through feedback concerning results for each institution; and (4) perform additional studies to explore specific clinical research questions. We conducted a cross-sectional, anonymous, self-report questionnaire survey involving patients’ bereaved family members in 20 acute hospitals, 133 PCUs, and 22 home hospice services between May and July 2014. Two types of questionnaires were used: main and specific studies questionnaires. The questionnaire was sent to totally 13 584, and 10 157 returned the questionnaire. The analysis included 9126 family members’ questionnaires from acute hospitals, PCUs, and home hospice services. Respondents’ average age was 61.6 years, 55% were women, and 40% had been married to the deceased. With respect to the characteristics of participating institutions, most institutions did not have religious affiliations, and most PCUs and home hospice services provided bereavement care. These results of the analysis of common and additional questionnaires could play an important role in clinical settings, quality improvement, research, and public accountability.
Hospice and Palliative Medicine (HPM) competencies are of growing importance in training general pediatricians and pediatric sub-specialists. The Accreditation Council for Graduate Medical Education (ACGME) emphasized pediatric trainees should understand the "impact of chronic disease, terminal conditions and death on patients and their families." Currently, very little is known regarding pediatric trainee education in HPM.
We surveyed all 486 ACGME-accredited pediatric training program directors (PDs) - 200 in general pediatrics (GP), 57 in cardiology (CARD), 64 in critical care medicine (CCM), 69 in hematology-oncology (ONC) and 96 in neonatology (NICU). We collected training program's demographics, PD's attitudes and educational practices regarding HPM.
The complete response rate was 30% (148/486). Overall, 45% offer formal HPM curriculum and 39% offer a rotation in HPM for trainees. HPM teaching modalities commonly reported included conferences, consultations and bedside teaching. Eighty-one percent of all respondents felt that HPM curriculum would improve trainees' ability to care for patients. While most groups felt that a HPM rotation would enhance trainees' education [GP (96%), CARD (77%), CCM (82%) and ONC (95%)], NICU PDs were more divided (55%; p < 0.05 for all comparisons vs. NICU).
While most programs report perceived benefit from HPM training, there remains a paucity of opportunities for pediatric trainees. Passive teaching methods are frequently utilized in HPM curricula with minimal diversity in methods utilized to teach HPM. Opportunities to further emphasize HPM in general pediatric and pediatric sub-specialty training remains.
To investigate the psychometric properties of the Greek 13-item measure of patients’ satisfaction (FAMCARE-P13) in palliative care setting.
A hundred patients completed the FAMCARE-P13. Exploratory factor analysis and confirmatory factor analysis (CFA) have been conducted. Two factors’ solution was revealed from CFA. The questionnaire was administered to an initial validation sample and then for test–retest in a sample of 40 patients 3 days later. The Rosenberg Self-Esteem Scale measuring global self-esteem has been also used as a gold standard for construct validity. Subscale and known groups validity have also been tested for FAMCARE-P13s’ validity.
A reduced 13-item version of our measure (FAMCARE-P13) possessed 2-factor structure with high reliability. Patient satisfaction was correlated with physical distress, communication and relationship with health-care providers, and caregiver satisfaction.
We recommend the use of the Greek FAMCARE-P13 to assess care satisfaction of patients with advanced-stage cancer.
Malnutrition (MN) often goes unrecognized due to ineffective screening techniques. Published standards for multidisciplinary care exist but no consensus on best nutritional assessment for hospitalized patients. Malnutrition is common in cancer and adversely affects clinical outcomes. The Cleveland Clinic Nutrition Therapy Department used in-house criteria to classify MN in hospitalized patients. This study aimed to evaluate the registered dietitian (RD)’s role, the use of these criteria in the acute care palliative medicine unit (ACPMU), and investigate MN prevalence and severity among admitted patients with cancer.
Electronic medical records were reviewed for newly admitted patients with cancer to the ACPMU with a first time RD consult and completed nutritional therapy assessment. Physician (MD) assessments were derived from admission notes. Cox regression model assessed the association of MN prevalence and severity with survival. McNemar’s test determined whether a prevalence difference existed between RD and MD.
Variations existed in criteria used to identify MN. Seventy percent had MN, with the majority (61%) classed as moderate to severe. Prevalence (hazard ratio [HR]: 1.88; P = .002) and severity (HR: 1.22; P = .006) were associated with significantly increased mortality. Evaluations by RD and MD were highly congruent, but MDs underrecorded nutritional status.
Malnutrition was prevalent and clinically important, even in those on nutritional support. Variations in MN identification were common. Physicians underrecorded MN but were accurate for prevalence and severity when recorded. The data confirm the RD’s important role in MN assessment. Comparable clinical practice and better communication between physicians and dietitians should improve cancer care and optimize quality of life.
A feasibility evaluation of a comprehensive quality indicator set for palliative care identified the need for a minimal selection of these indicators to monitor quality of palliative care services with short questionnaires for the patients, caregivers, and family carers.
To develop a minimal indicator set for efficient quality assessment in palliative care.
A 2 round modified Research ANd Development corporation in collaboration with the University of California at Los Angeles (RAND/UCLA) expert consultation.
Thirteen experts in palliative care (professionals and patient representatives).
In a home assignment, experts were asked to score 80 developed indicators for "priority" to be included in the minimal set on a scale from 0 (lowest priority) to 9 (highest priority). The second round consisted of a plenary meeting in which the minimal set was finalized.
Thirty-nine of the 80 indicators were discarded, while 19 were definitely selected after the home assignment, and 22 were proposed for discussion during the meeting; 12 of these survived the selection round. The final minimal indicator set for palliative care consists of 5 indicators about the physical aspects of care; 6 about the psychosocial aspects of care; 13 about information, communication, and care planning; 5 about type of care; and 2 about continuity of care.
A minimal set of 31 indicators reflecting all the important issues in palliative care was created for palliative care services to assess the quality of their care in a quick and efficient manner. Additional topic-specific optional modules are available for more thorough assessment of specific aspects of care.
Many patients with advanced heart failure (HF) experience the life-extending benefits of implantable cardioverter-defibrillators (ICD), but at the end stage of HF, patients may experience shocks with increasing frequency and change the plan for end-of-life (EOL) care including the deactivation of the ICD. This report describes family members’ experiences of patients with ICD making decisions at EOL. Understanding the decision-making of patients with ICD at EOL can promote informed decision-making and improve the quality of EOL care.
This pilot study used a mixed methods approach to test the effects of a nurse-guided discussion in decision-making about ICD deactivation (turning off the defibrillation function) at the EOL. Interviews were conducted, audiotaped, and transcribed in 2012 to 2013 with 6 family members of patients with advanced HF and ICDs. Three researchers coded the data and identified themes in 2014.
Three main themes described family members’ experiences related to patients having HF with ICDs making health-care decision at EOL: decision-making preferences, patients’ perception on ICD deactivation, and communication methods.
Health-care providers need to have knowledge of patients’ decision-making preferences. Preferences for decision-making include the allowing of appropriate people to involve and encourages direct conversation with family members even when advance directives is completed. Information of ICD function and the option of deactivation need to be clearly delivered to patients and family members. Education and guidelines will facilitate the communication of the preferences of EOL care.
Although spiritual care is considered one of the pillars of palliative care, many health-care providers never receive formal training on how to communicate about spirituality with patients and families. The aim of this study was to explore the spiritual care experiences of oncology nurses in order to learn more about patient needs and nurse responses.
A survey was circulated at a communication training course for oncology nurses in June 2015. Nurses recalled a care experience that included the initiation of a spiritual care topic and their response to the patient/family. Data were analyzed using thematic analysis.
Nurses reported that communication about spirituality was primarily initiated by patients, rather than family members, and spiritual topics commonly emerged during the end of life or when patients experienced spiritual distress. Nurses’ experiences highlighted the positive impact spiritual conversations had on the quality of patient care and its benefit to families. Spiritual communication was described as an important nursing role at the end of patients’ lives, and nonverbal communication, listening, and discussing patients’ emotions were emphasized as important and effective nurse communication skills during spiritual care conversations. Approximately one-third of nurses in the sample reported sharing their own personal spiritual or religious backgrounds with patients, and they reported that these sharing experiences strengthened their own faith.
It is evident that patients want to discuss spiritual topics during care. Study findings illustrate the need to develop a spiritual communication curriculum and provide spiritual care communication training to clinicians.
To describe the CARES program, a model of palliative care for nursing home residents.
Descriptive analysis of the Caring About Residents’ Experiences and Symptoms (CARES) Program that provides palliative care services to nursing home residents.
The CARES Program serves as an example of collaborative efforts to meet community needs. To evaluate the program, we document the services provided as well as process outcomes (changes to care plans, hospitalizations, location of death, and hospice utilization) for residents referred.
170 nursing home residents were seen by CARES Program between February 2013 to December 2015, 48% for skilled services, and 52% for long term care. Majority of referrals were for goals of care and concurrent symptom management. Following consultation, 67% of residents had a change in code status. Of residents desiring a palliative course 90% were never hospitalized. Overall, 53% of residents died; and those in long term care dying more often with hospice.
The CARES program of palliative consultation addresses the needs of nursing home residents. The model has potential to be reproducible in in other communities.
Despite the risk of drug-induced delirium, it is difficult to avoid the use of opioids in palliative care. However, no previous study has carefully investigated how the development of delirium varies among patients injected with different opioids for the first time.
To reveal the difference in the incidence of delirium between different opioids.
The incidence of delirium was compared among 114 patients who had started morphine, oxycodone, or fentanyl injection at Shizuoka Cancer Center between June 2012 and September 2014.
The incidence of delirium was 28.9% in the morphine group (n = 38), 19.5% in the oxycodone group (n = 41), and 8.6% in the fentanyl group (n = 35). There was a significant difference between the morphine and fentanyl groups (Fisher's exact test, P = 0.04) but not between the morphine and oxycodone groups (P = 0.43) nor between the oxycodone and fentanyl groups (P = 0.21).
The incidence of delirium after the commencement of fentanyl injection was significantly lower, suggesting that fentanyl is a useful opioid injection drug from the perspective of delirium risk.
Between 2013 and 2030, older adults 65 years and older of racial/ethnic populations in the U.S. is projected to increase by 123% in comparison to the Whites (Non-Hispanics). To meet this demand, training of ethnically diverse health staff in long-term care facilities in palliative and hospice care is imperative. The purpose of this study was to evaluate a palliative and hospice care training of staff in two nursing homes in Hawaii - (a) to evaluate knowledge and confidence over three time periods, and (b) to compare staff and family caregiver satisfaction at end of program. The educational frameworks were based on cultural and communication theories. Fifty-two ethnically diverse staff, a majority being Asian (89%), participated in a 10-week module training and one 4 hour communication skills workshop. Staff evaluation included knowledge and confidence surveys, pre- and post-test knowledge tests, and FAMCARE-2 satisfaction instrument. There were nine Asian (89%) and Pacific Islander (11%) family caregivers who completed the FAMCARE-2 satisfaction instrument. The overall staff knowledge and confidence results were promising. The staff rated overall satisfaction of palliative care services lower than the family caregivers. Implications for future research, practice, and education with palliative and hospice care training of ethnically diverse nursing home staff is to include patient and family caregiver satisfaction of palliative and hospice care services, evaluation of effectiveness of cross-cultural communication theories in palliative and hospice care staff training, and support from administration for mentorship and development of these services in long term care facilities.
Medicine in the final months of life is increasingly interventional, both in the manner by which life may be prolonged and symptoms may be reduced. Radiology is frequently utilized to provide diagnostic clarity and improve symptom control. As with any intervention, examining the benefit and potential harms of a procedure is required to establish its role in ongoing clinical care.
This retrospective cohort study involved patients admitted to an inpatient palliative care unit between October 2013 and September 2014. Data were collected using clinical databases manually searched by the researchers.
Of 388 admissions, there were a total of 154 imaging events completed in 85 patients. Patients who had imaging performed had longer mean length of stays, more likely to be discharged home, and male. Very few imaging events (4%) occurred in the 3 days prior to death and none on the day of death. In total, 43% of imaging confirmed the clinical suspicion and management changed 42% of times. Limbs X-rays and computed tomography brain had low rates of confirming clinical suspicion (21% and 17%) and changing management (21% and 33%). There were a total of 7 complications resulting from imaging, the majority due to interventional procedures.
The use of imaging in inpatient palliative care seems to be of substantive utility, prompting alterations in management in >40% of instances. The majority of imaging occurred prior to the terminal phase of the disease and with few complications.
There is little evidence about barriers to pain management or their relationships with pain outcomes of hospice patients with cancer. The purpose of the study was to determine the barriers reported by hospice patients with cancer and their caregivers and the relationships with demographic characteristics and the patients’ pain. In this cross-sectional study, we used selected baseline data from an ongoing randomized clinical trial of patient and lay caregiver dyads receiving home-level hospice care. Participants used an Internet-enabled tablet to complete the valid, reliable measures of pain intensity, pain management barriers (Barriers Questionnaire 13 items [BQ-13]), and demographic characteristics. The responses indicate that the 2 areas of highest concern (mean scores >3) to both patients and caregivers were "pain means disease progression" and "constipation." Additionally, 3 other areas of highest concern (mean scores >3) to caregivers were "addiction" pain medicine causing "one to do embarrassing things" and "confusion." The mean BQ-13 scores ranged from 0.2 to 4.9 and averaged 2.6 ± 0.9 for the patients and ranged from 0.5 to 4.7 and averaged 2.7 ± 0.9 for the caregivers. Mean barrier scores remain high and were not different between patients and their caregivers or significantly related to the patients’ pain intensity. However, there were differences in race, ethnic, and hospice setting in the barrier scores. Patients with Hispanic heritage reported higher barrier scores than non-Hispanic patients. Together, these findings not only support prior research findings but also contribute new insights about pain intensity and pain barriers that are relevant to hospices serving minorities with cancer.
This study was conducted to highlight Native American (NA) perspectives on death taboo in order to examine the cultural appropriateness of hospice services for NA patients, if any. Searching literature that addressed taboo and death from historical, psychological, sociological, and anthropological aspects, a comparison of death perspectives was made between NAs and European Americans. A culturally sensitive transition from palliative care to hospice care was suggested for NA patients and their family.
Pain management was the most identified burden faced by family caregivers in end-of-life caregiving.
To synthesize current scientific evidence on family caregivers’ experience of pain management in end-of-life care.
A systematic review was conducted using CINAHL, Embase, PubMed, and Cochrane Library electronic databases. Data were extracted from each included paper and organized into tables to synthesize the findings.
Fourteen research papers focusing on family caregivers’ experience of pain management and strategies in end-of-life care were included. Nine were observational studies, 3 were case studies, and 2 were experimental studies. These studies mainly focused on exploring family caregivers’ engagement in pain management and communication with the hospice care team about pain control; family caregivers’ knowledge, skills, and self-efficacy in pain management; and family caregivers’ concerns and experience of pain management.
This review identified themes similar to previous reviews on family caregivers of patients with cancer or in palliative care: inadequate knowledge and assessment skills in pain management, misunderstanding of pain medications, and poor communication with the care team. Future research should design educational programs and material for family caregivers to improve their pain management knowledge and skills, communication, and engagement in care. The scientific knowledge on this topic is scarce, and level of evidence is low; it is therefore imperative to have more exploratory studies to expand the quality and quantity of evidence and increase our understanding of family caregivers’ needs and barriers to pain management based on larger and more diverse patient and caregiver samples.
The purpose of this article is to describe examples of near-death and other transpersonal experiences occurring during catastrophic events like floods, wars, bombings, and death camps. To date, researchers have limited their investigations of these transpersonal events to those occurring to seriously ill patients in hospitals, those dying from terminal illnesses, or to individuals experiencing a period of grief after the death of a loved one. Missing is awareness by first responders and emergency healthcare professionals about these transpersonal experiences and what to say to the individuals who have them. Some responders experience not only deaths of the victims they assist, but also deaths of their colleagues. Information about these transpersonal experiences can also be of comfort to them. The examples in this article include a near-death experience during the Vietnam War, an out-of-body experience after a bomb explosion during the Iraq War, a near-death visit to a woman imprisoned at Auschwitz, and two after-death communications, one from a person killed in Auschwitz and another from a soldier during World War I. Also included are interviews with two New York City policemen who were September 11, 2001 responders. It is hoped the information will provide knowledge of these experiences to those who care for those near death, or dying, or grieving because of catastrophic events, and encourage researchers to further investigate these experiences during disasters.
The purpose of this longitudinal study of US medical schools over a 40-year period was to ascertain their offerings on end-of-life (EOL) issues. At 5-year intervals, beginning in 1975, US medical schools were surveyed via a questionnaire to determine their EOL offerings. Data were reported with frequency distributions. The Institute of Medicine has encouraged more emphasis on EOL issues over the past 2 decades. Findings revealed that undergraduate medical students in the United States are now exposed to death and dying, palliative care, and geriatric medicine. The inclusion of EOL topics has definitely expanded over the 40-year period as findings reveal that US undergraduate medical students are currently exposed in over 90% of programs to death and dying, palliative care, and geriatric medicine, with the emphasis on these topics varying with the medical programs. Such inclusion should produce future favorable outcomes for undergraduate medical students, patients, and their families.
Advance care planning (ACP) discussions afford patients and physicians a chance to better understand patients’ values and wishes regarding end-of-life care; however, these conversations typically take place late in the course of a disease. The goal of this study was to clarify attitudes of oncologists, cardiologists, and primary care physicians (PCPs) toward ACP and to identify persistent barriers to timely ACP discussion following a quality improvement initiative at our health system geared at improvement in ACP implementation.
A 20-question, cross-sectional online survey was created and distributed to cardiologists, oncologists, PCPs, and cardiology and oncology support staff at the NorthShore University HealthSystem (NorthShore) from February to March 2015. A total of 117 individuals (46% of distributed) completed the surveys. The results were compiled using an online survey analysis tool (SurveyMonkey, Inc., Palo Alto, California, USA).
Only 15% of cardiologists felt it was their responsibility to conduct ACP discussions with their patients having congestive heart failure (CHF). In contrast, 68% of oncologists accepted this discussion as their responsibility in patients with terminal cancer (P < .01). These views were mirrored by PCPs, as 68% of PCPs felt personally responsible for ACP discussion with patients having CHF, while only 34% felt the same about patients with cancer. Reported documentation of these discussions in the electronic health record was inconsistent between specialties. Among all surveyed specialties, lack of time was the major barrier limiting ACP discussion. Perceived patient discomfort and discomfort of the patient’s family toward these discussions were also significant reported barriers.
Attitudes toward ACP implementation vary considerably by medical specialty and medical condition, with oncologists in this study tending to feel more personal responsibility for these discussions with patients having cancer than cardiologists with their patients having heart failure. Robust implementation of ACP across the spectrum of medical diagnoses is likely to require a true collaboration between office-based PCPs and specialists in both the inpatient and the ambulatory settings.
Pain is a common and debilitating symptom in pelvic cancer diseases. Failure in controlling this pain through pharmacological approaches calls for employing multimodal management and invasive techniques. Various strategies are commonly used for this purpose, including palliative radiotherapy, epidural medications and intrathecal administration of analgesic and local anesthetic drugs with pumps, and neural or plexus blockade. This review focuses on the features of minimally invasive palliative procedures (MIPPs), such as radiofrequency ablation, laser-induced thermotherapy, cryoablation, irreversible electroporation, electrochemotherapy, microwave ablation, and cementoplasty as well as their role in palliation of cancer pelvic pain. Despite the evidence of effectiveness and safety of these interventions, there are still many barriers to accessing MIPPs, including the availability of trained staff, the lack of precise criteria of indication, and the high costs.
Anger is a common reaction to cancer diagnosis which may impact patients’ perceptions of their prognosis and goals of care. This study tested the hypothesis that men with prostate cancer who are anger prone are pessimistic regarding their cancer prognosis.
Two hundred and twelve men with a history of prostate cancer completed measures of personality traits, their prostate cancer prognosis, and their perception of their doctor’s assessment of their prognosis. Anger proneness was operationally defined by the presence of high levels (ie, above the medians) of neuroticism and disagreeableness.
One in 4 men with prostate cancer disagreed with their doctor about prognosis. Anger-prone participants endorsed more pessimistic perceptions of prognosis (P = .041). This significant association was maintained after accounting for potential confounders.
Greater attention paid to patient anger regulation style and pessimistic perceptions will improve discussions about prognosis and goals of care among men with prostate cancer. Given recent calls for wider distress screening and earlier palliative care intervention in cancer settings, providers have an unprecedented opportunity to assess and respond to anger in the clinical setting. Communication could be improved through empathic statements that convey realistic optimism when appropriate, a commitment to the patient–provider relationship and a willingness to explore and address patient needs.
Utilization of hospice has increased significantly over the past 2 decades, but there has been no recent assessment of US physicians’ opinions regarding and practices of referring patients to hospice.
We surveyed 2016 US physicians from various specialties. Respondents agreed or disagreed with 2 statements: "For most patients, hospice provides better care at the end of life than they would otherwise receive without hospice" and "Many patients who enter hospice end up missing out on medical interventions from which they would have benefited." Physicians were also asked, "In the past 12 months, approximately how many patients and/or their surrogates have you encouraged to consider entering hospice?"
Ninety-eight percent of physicians agreed that hospice provides better care at the end of life than the patient would receive without hospice. Only 11% of physicians agreed that patients who enter hospice miss out on medical interventions from which they would have benefitted. Ninety-two percent encouraged at least 1 patient to consider hospice in the previous 12 months. Oncologists were the most ambivalent about whether patients who enter hospice miss out on beneficial interventions, but they also referred more patients to hospice than physicians from other specialties.
US physicians overwhelmingly believe hospice is the best form of care for most patients at the end of life. Compared to a study published in 1998, the median oncologist reports referring fewer patients to hospice, but the median general internist reports referring more.
A survey was conducted to examine the frequency, acceptability, and functions of humor between hospice palliative care volunteers and their patients, from the volunteers’ perspective. Thirty-two volunteers completed the survey, which was developed for this study. The results revealed that most patients and volunteers initiated humor either "often" or "sometimes" in their interactions. Over half of the volunteers considered humor to be either "very important" or "extremely important" in their interactions with patients (42% and 13%, respectively), with the patient being the determining factor as to whether and when it is appropriate or not (ie, volunteers take their lead from their patients). Volunteers mentioned a number of functions that humor serves within their patient interactions (eg, to relieve tension, to foster relationships/connections, and to distract). Laughter and humor fulfills one of the main goals of hospice palliative care, namely, improving patients’ overall quality of life.
Referrals to palliative care for patients at the end of life in the intensive care unit (ICU) often happen late in the ICU stay, if at all. The integration of a palliative medicine advanced practice nurse (APN) is one potential strategy for proactively identifying patients who could benefit from this service.
To evaluate the association between the integration of palliative medicine APNs into the routine operations of ICUs and hospital costs at 2 different institutions, Montefiore Medical Center (MMC) and Rush University Medical Center.
The association between collaborative palliative care consultation service programs and hospital costs per patient was evaluated for the 2 institutions. Hospital costs were compared for patients with and without a referral to palliative care using Mann-Whitney U tests.
Hospital nonroom and board costs at the Weiler campus of MMC were significantly lower for patients with palliative care compared with those who did not receive palliative care (Median = US$6643 vs US$12 399, P < .001). Cost differences for ICU patients with and without palliative care at Rush University Medical Center were not significantly different.
Our evaluation suggests that the integration of APNs into a palliative care team for case finding may be a promising strategy, but more work is needed to determine whether reductions in cost are significant.
Various distresses appear in the terminal stage of cancer. Oral problems including dry mouth, stomatitis and candidiasis are one of the important problems which should be resolved. The purpose of this study was to investigate oral problems in this stage and improvement of dry mouth by oral care.
The study subjects were consecutive terminally ill cancer patients admitted over the past 2 years. Patients were divided based on the status of oral food intake into good oral food intake group (≥30%) and poor oral food intake group. The following 3 items were retrospectively investigated: 1) The incidences of these oral problems, 2) Severity of dry mouth and complication with other oral problems, 3) Improvement of dry mouth using standard oral care by nursing staff and specialist oral care including dentists as needed.
There were 115 and 158 patients in good and poor oral intake groups, respectively. 1) The incidences of dry mouth, stomatitis, and candidiasis were significantly higher in poor oral intake group (p < 0.001). 2) Severe cases of dry mouth (Grade-2&3) were noted in 20.0% and 64.8% in good and poor oral intake groups, respectively (p < 0.0001). Candidiasis complication rate was significantly higher in poor oral intake group (p = 0.0002). 3) The rate of dry mouth improvement by oral care was 100% in Grade-1, 86% in Grade-2 and 81% in Grade-3.
Oral problems occur in many of terminally ill cancer patients. Accurate diagnosis of oral problems and corresponding appropriate interventions are important for improving quality of end-of-life care.
This study was designed to clarify the association between pain and quality of life (QOL) of Japanese patients with cancer using a cancer-specific QOL scale (European Organization for Research and Treatment of Cancer [EORTC] QLQ-C15-PAL) in 3 care settings (outpatient, inpatient, and palliative care units [PCUs]).
We examined the above-mentioned purpose for the total of 404 patients.
In outpatients, physical, emotional functioning (EF), and global health status/QOL (QL item) were significantly correlated with average pain, and their correlation coefficients were –0.37 to –0.46 (P < .0001). In inpatients, they were –0.33 (P = .006), –0.26 (P = .030), and –0.31 (P = .012). In the PCU patients, they were –0.12 (P = .316), –0.30 (P = .009), and –0.28 (P = .015).
Patients’ pain had an association with physical and emotional QOL, and the association was smaller in the PCU patients than the others.
Many terminally ill patients would prefer to stay and die in their own homes, but unfortunately, some may not be able to do so. Although there are many factors associated with successful home deaths, receiving palliative home visits from the multidisciplinary care teams is one of the key factors that enable patients to die at home. Our study was aimed to find whether there was any association between our palliative home care program and home death.
A retrospective study was conducted in the Department of Family Medicine at Ramathibodi Hospital between January 2012 and May 2014. All of the patients who were referred to multidisciplinary palliative care teams were included. The data set comprised of patient’s profile, disease status, functional status, patient’s symptoms, preferred place of death, frequency of home visits, types of team interventions, and patient’s actual place of death. Multiple logistic regression was applied in order to determine the association between the variables and the probability of dying at home.
A total of 142 patients were included into the study. At the end of the study, 50 (35.2%) patients died at home and 92 (64.8%) patients died in the hospital. The multivariate logistic regression analysis demonstrated a strong association between multidisciplinary home care and home death (odds ratio 6.57, 95% confidence interval [CI] 2.48-17.38).
Palliative home care was a significant factor enabling patients who want to die at home. We encourage health policy makers to promote the development of community-based palliative care programs in Thailand.
Corticosteroids are frequently used to treat cancer-related fatigue (CRF), but it is yet to be established as standard care, and few reports have defined the appropriate time to start treatment.
We investigated the optimal time for starting betamethasone and evaluated the clinical validity of using the prognostic nutritional index (PNI) for this purpose.
Data were retrospectively collected for patients with terminal cancer receiving betamethasone for palliative care. Fatigue strength was evaluated by the daily occurrence of fatigue, using proportion of adequate fatigue, AF(%), defined as the average of the daily score for all treatment days, AF(%)all, the initial 5 days, AF(%)initi5, or the last 5 days, AF(%)last5. We examined (1) the relationship between survival time and adequate fatigue for CRF and (2) the correlation between survival time and PNI (based on serum albumin and lymphocytes).
Data from 24 patients were included. The AF(%)all was approximately 50% at 42 days before death and gradually decreased as the survival time shortened (R 2 =.41, P <.001). There was a clear positive correlation between AF(%)all and AF(%)initi5 (R 2 =.84, P <.001). At 42 days before death, PNI was approximately 30 and significantly correlated with the survival time (R 2 = .873, P <.001).
The adequate fatigue appears to be dependent on survival time, and PNI might be useful for identifying patients that will benefit from betamethasone use. It is hoped that these results will contribute to individualized pharmacotherapy of terminally ill patients with CRF.
Differences among patient populations that present to consultative palliative care are not known. Such an appreciation would inform health-care delivery tailored to unique populations.
We aimed to compare characteristics and palliative care needs of African Americans (AAs) and whites during initial palliative care consultation.
We analyzed patient-reported, clinician-entered clinical encounter data from a large, multisite community-based, nonhospice palliative care collaborative. We included first specialty palliative care consultations from January 1, 2014, to July 2, 2015, across 15 sites within the Global Palliative Care Quality Alliance registry. Demographics, disease, performance status, advance care planning, and symptom prevalence/severity were compared.
Of 775 patients, 12.9% (N = 100) were AA. African Americans were younger (63 vs 75.4 years, P < .0001). A larger proportion of AAs had a diagnosis of cancer (45.0% vs 36.3%, P = .09) and in the hospital (71% vs 61.8%, P = .07). African Americans were more likely to have a Palliative Performance Score of 0 to 30 (35.6% vs 23.7%, P = .049). Around 50% in both racial groups were full code; slightly more than 40% had an advance directive. Nearly two-thirds in both racial groups reported 3 or more symptoms of any severity; one-third reported 3 or more moderate or severe symptoms. A larger proportion of Africans than whites reported pain of any severity (66.0% vs 56.1%, P = .06).
All patients present to palliative care consultations with significant symptom and advance care planning needs. Further research is needed to identify how to deliver palliative care: earlier, in noncancer conditions, and improve pain management in AA populations.
Studies have identified racial differences in advance care planning and use of hospice for care at the end of life. Multiple reasons for underuse among African American patients and their families have been proposed and deserve further exploration.
The goal of this study was to examine perceptions of advance care planning, palliative care, and hospice among a diverse sample of African Americans with varying degrees of personal and professional experience with end-of-life care and use these responses to inform a culturally sensitive intervention to promote awareness of these options.
Semistructured interviews and focus groups were conducted with African Americans who had varying degrees of experience and exposure to end-of-life care both personally and professionally. We conducted in-depth qualitative analyses of these interviews and focus group transcripts and determined that thematic saturation had been achieved.
Several themes emerged. Participants felt that advance care planning, palliative care, and hospice can be beneficial to African American patients and their families but identified specific barriers to completion of advance directives and hospice enrollment, including lack of knowledge, fear that these measures may hasten death or cause providers to deliver inadequate care, and perceived conflict with patients’ faith and religious beliefs. Providers described approaches they use to address these barriers in their practices.
Findings, which are consistent with and further elucidate those identified from previous research, will inform design of a culturally sensitive intervention to increase awareness and understanding of advance care planning, palliative care, and hospice among members of the African American community.
Numerous factors impede effective and timely end-of-life (EOL) care communication. These factors include delays in communication until patients are seriously ill and/or close to death. Gaps in patient–provider communication negatively affect advance care planning and limit referrals to palliative and hospice care. Confusion about the roles of various health care providers also limits communication, especially when providers do not coordinate care with other health care providers in various disciplines. Although providers receive education regarding EOL communication and care coordination, little is known about the roles of all health care providers, including nonphysician support staff working with physicians to discuss the possibility of dying and help patients prepare for death. This study explores the perspectives of physicians, nurses, social workers, and chaplains on engaging seriously ill patients and families in EOL care communication. Qualitative data were from 79 (medical and nonmedical) providers practicing at 2 medical centers in Central Los Angeles. Three themes that describe providers’ perceptions of their roles and responsibility in talking with seriously ill patients emerged: (1) providers’ roles for engaging in EOL discussions, (2) responsibility of physicians for initiating and leading discussions, and (3) need for team co-management patient care. Providers highlighted the importance of beginning discussions early by having physicians lead them, specifically due to their medical training and need to clarify medical information regarding patients’ prognosis. Although physicians are a vital part of leading EOL communication, and are at the center of communication of medical information, an interdisciplinary approach that involves nurses, social workers, and chaplains could significantly improve patient care.
Palliative care for infants, children, and adolescents encompasses numerous transitions and thresholds of uncertainty that challenge conventional clinical medicine. Palliative care clinicians have opportunities to be more comfortable amid such challenges, or perhaps even overcome them, if they are attuned to the unique times and places in which patients, their families, and caregivers find themselves throughout illness and recovery or transitioning toward the end of life. Patient–clinician encounters often dwell in these liminal places. The concept of liminality gives validation to the patient or family’s being "stuck in places betwixt and between" a past life rich with relationship and purpose and an acute, chronic, or critical illness. Or having resolved the acute crisis of hospitalization that place between the past bounds of illness and the uncertain path forward, perhaps even toward death. Liminality provides a framework for addressing the unbound spaces that patients and families occupy: What is past is behind—the present place is tenuous and temporary, and what is ahead uncertain. This place is where palliative care clinicians can offer clinicians and families guidance.
Aims of the present study were to investigate the association between awareness of own illness condition and psychological outcome in end-of-life phase and to test the association between the spirituality and the awareness of own illness condition.
Three hundred and ninety-nine terminally ill patients with cancer were enrolled in a hospice in central Italy. One hundred patients satisfied the inclusion criteria. The Systems of Belief Inventory, the Hospital Anxiety and Depression Scale, and a psychological interview to determine the level of awareness of the illness diagnosis (aware; partially aware; and not aware) were administered to terminally ill patients.
The main finding was that the awareness of one’s own illness condition was positively associated with the extrinsic spirituality and negatively associated with intrinsic spirituality (regression model R = .26; R 2 = .07; adjusted R 2 = .05; F 2, 97 = 3.45; P = .036). The aware group showed lower anxiety and depression (F 2, 97 = 1.9; P = . 075; F 2, 97 = 2.6; P = .04) scores than partially aware and not aware groups. The psychological outcome was not associated with the spirituality level.
In terminally ill patients with cancer, the levels of depression and anxiety were lower in patients aware of their own illness state. Moreover, higher levels of extrinsic and lower levels of intrinsic spirituality predicted the awareness of one’s own illness state.
Pain may be reported in one-half to three-fourths of children with cancer and other terminal conditions and anxiety in about one-third of them. Pharmacologic methods do not always give satisfactory symptom relief. Complementary therapies such as Reiki may help children manage symptoms.
This pre–post mixed-methods single group pilot study examined feasibility, acceptability, and the outcomes of pain, anxiety, and relaxation using Reiki therapy with children receiving palliative care.
A convenience sample of children ages 7 to 16 and their parents were recruited from a palliative care service. Two 24-minute Reiki sessions were completed at the children’s home. Paired t tests or Wilcoxon signed-rank tests were calculated to compare change from pre to post for outcome variables. Significance was set at P < .10. Cohen d effect sizes were calculated.
The final sample included 8 verbal and 8 nonverbal children, 16 mothers, and 1 nurse. All mean scores for outcome variables decreased from pre- to posttreatment for both sessions. Significant decreases for pain for treatment 1 in nonverbal children (P = .063) and for respiratory rate for treatment 2 in verbal children (P = .009). Cohen d effect sizes were medium to large for most outcome measures.
Decreased mean scores for outcome measures indicate that Reiki therapy did decrease pain, anxiety, heart, and respiratory rates, but small sample size deterred statistical significance. This preliminary work suggests that complementary methods of treatment such as Reiki may be beneficial to support traditional methods to manage pain and anxiety in children receiving palliative care.
Cancer chemotherapy can induce fatigue in about 20% to 30% of patients. So far, there is very little information as to the predictors of chemotherapy-induced fatigue (CIF). We evaluated potential predictors of CIF in a sample of patients with cancer with several types of solid tumors scheduled to receive chemotherapy according to institutional protocols.
Before their first and second chemotherapy cycles, patients answered to the Brief Fatigue Inventory (BFI), Chalder, Mini Nutritional Assessment (MNA), Stress thermometer, and HADS questionnaires as well as provided blood samples for inflammatory markers.
We evaluated 52 patients, 37 (71%) were female and mean age was 53 years. The most common tumors were breast cancer 21 (40%) and gastrointestinal tumors 12 (23%). Although 14 (25.2%) patients had an increase in their fatigue BFI scores equal or above 3 points from baseline, we observed no significant overall differences between BFI scores before and after chemotherapy. The only 2 factors associated with an increase of 3 points in the BFI scores after chemotherapy were race and higher baseline BFI levels. By multivariate analysis, overall BFI and Chalder scores after chemotherapy also correlated significantly with their respective baseline scores before treatment. HADS scores before treatment correlated with overall BFI scores postchemotherapy, whereas MNA scores before chemotherapy and female sex correlated with higher Chalder scores after treatment.
We conclude that fatigue induced by chemotherapy is common and consistently associated with higher fatigue scores before treatment. Screening for fatigue before chemotherapy may help to identify patients who are prone to develop CIF.
Internal medicine residents are frequently called upon to provide palliative care to hospitalized patients, but report feeling unprepared to do so effectively. Curricular development to enhance residents’ palliative care skills and competencies requires an understanding of current beliefs, attitudes and learning priorities.
We conducted a qualitative study consisting of semi-structured interviews with ten internal medicine residents to explore their understanding of and experiences with palliative care.
All of the residents interviewed had a sound theoretical understanding of palliative care, but faced many challenges in being able to provide care in practice. The challenges described by residents were system-related, patient-related and provider-related. They identified several priority areas for further learning, and discussed ways in which their current education in palliative care could be enhanced.
Our findings provide important insights to guide curricular development for internal medicine trainees. The top five learning priorities in palliative care that residents identified in our study were: 1) knowing how and when to initiate a palliative approach, 2) improving communication skills, 3) improving symptom management skills, 4) identifying available resources, and 5) understanding the importance of palliative care. Residents felt that their education in palliative care could be improved by having a mandatory rotation in palliative care, more frequent didactic teaching sessions, more case-based teaching from palliative care providers, opportunities to be directly observed, and increased support from palliative care providers after-hours.
Palliative care is increasingly important in the care of adults with cystic fibrosis (CF). Symptoms such as pain and dyspnea are prevalent, yet severity may be underestimated. Little information is available to describe patient preferences for end-of-life care (EOLC). The objective of this study was to describe patient perceptions about pain, dyspnea, and advance care planning.
We developed a survey to assess pain, dyspnea, and EOLC in adults with CF. Questions were compiled and adapted from existing tools. The survey was administered to all patients in a single adult CF care center. Descriptive data were compiled as counts (proportions) and median (25th and 75th percentile). Mann Whitney U test was used to determine differences between individuals who experienced pain and dyspnea. A P value of .05 was utilized to determine significance.
Thirty-seven of 43 surveys were returned. Twenty-four percent reported chronic pain. Patients who reported pain with airway clearance had lower lung function (predicted forced expiratory volume in 1 [FEV1] 42% vs 65%, P < .05) and body mass index (19.6 vs 22.3, P < .05) than patients without pain. Those reporting dyspnea at rest had lower median FEV1 (28% vs 61%, P < .05). Patients with lower lung function are more likely to have considered end-of-life decisions (73% vs 31%, P < .05).
Pain and dyspnea are common among adults with CF. Few had an advance directive in place, but most are open to discussing EOLC issues. Results of this single-center study may not represent the entire population, thus a multicenter investigation should be pursued.
Hope is important to patients with cancer. Identifying factors that influence hope is important. Anxiety, depression, fatigue, and pain are reported to impair hope. The objective of this study was to determine whether age, gender, marital status, duration of cancer, symptoms, or symptom burden measured by the sum of severity scores on the Edmonton Symptom Assessment Scale (ESAS) correlated with hope measured by the Herth Hope Index (HHI).
Patients with advanced cancer in a palliative care unit participated. Demographics including age, gender, marital status, cancer site, and duration of cancer were collected. Individuals completed the ESAS and HHI. Spearman correlation and linear regression were used to assess associations adjusting for gender (male vs female), age (< 65 vs ≥ 65 years), marital status (married or living with a partner vs other), and duration of cancer (≤ 12 vs > 12 months).
One hundred and ninety-seven were participated in the study, of which 55% were female with a mean age of 61 years (standard deviation 11). Hope was not associated with gender, age, marital status, or duration of cancer. In univariable analysis, hope inversely correlated with ESAS score (–0.28), lack of appetite (–0.22), shortness of breath (–0.17), depression (–0.39), anxiety (–0.32), and lack of well-being (–0.33); only depression was clinically relevant. In multivariable analysis, total symptom burden weakly correlated with hope; only depression remained clinically significant.
This study found correlation between symptom burden and hope was not clinically relevant but was so for depression.
Among 9 ESAS symptoms, only depression had a clinically relevant correlation with hope.
The aim of this study was to explore the factors associated with posttraumatic growth (PTG) among adolescents bereaved owing to parental cancer in Japan.
An anonymous cross-sectional Web-based survey was conducted, enrolling adolescents bereaved because of parental cancer in the previous 5 years. Posttraumatic growth, number of social support members, support from medical staff, and behaviors after bereavement were measured. Multiple linear regression was performed to explore the association between total PTG score and possible related factors.
We assessed 57 participants in this study. Mean age was 19.3 (standard deviation [SD] = 2.0) years, and most participants were female (75.4%). Mean total score of the Japanese version of the PTG inventory was 43.0 (SD = 25.6). Participants’ mean number of social support members was 2.1 (SD = 1.3), and these support members were the surviving parent (66.7%), friends (38.6%), and siblings (36.8%). The multiple linear regression model explained 45% of the variance in PTG. In this model, the following 3 behaviors after bereavement were associated with PTG: "putting palms together in front of a parent’s picture or an altar" (β = .36, P = .006), "visiting a parent’s grave" (β = .29, P = .03), and "having fun with friends" (β = .25, P = .04).
Parentally bereaved adolescents in Japan experience PTG. Specific behaviors after bereavements might be recommended for PTG among Japanese adolescents bereaved because of parental cancer.
Although hospitals are the most likely place of death, the quality of care received by dying inpatients remains variable. This is concerning for both the dying person and their relatives, with poorer bereavement outcomes likely for those who perceived their family member suffered unduly. There is a real need to consider how this situation can be improved. This work was conducted with the aim of exploring the feasibility of including bereaved relatives’ experiences as part of a larger project exploring the use of a care bundle to improve care of the dying inpatients. Fifty relatives of inpatients who had died previously in hospital were contacted by letter with a request for interview before the implementation of a care bundle for the dying, with a care bundle being a collection of care processes that are implemented together. After this project had been in place for 6 months, a further 50 families were contacted who had died on the bundle. Ten families responded initially to the first request and 10 the second, with the interviews based on the Quality of Dying and Death (QODD) tool and a final open-ended question. Although all families who agree to be interviewed completed the session, with regard to the QODD, some families indicated that they would rather talk than provide numeric scores. No major differences in the prescores and postscores were noted. When invited to share their experiences, without prompting, families spoke of consistent concerns that included communication, place of death, and symptom control. This work confirms that it is highly feasible to incorporate assessments of bereaved family members’ opinions as part of the wider assessment of research into end-of-life care.
Residential hospices are often purpose-built to enhance the experience of patients and families. However, there has been relatively little research on ambient and sensory experiences of patients and families. This study explored the ambient and sensory experience of residents and families in a residential hospice. Hospice users participated in personalizing environments and experiences, adapting and developing rituals, and enjoying the experience (including smells and sounds) of communal spaces and private rooms. Opportunity for developing new rituals, in particular, suggests an environment supportive of sense of control, social support, and positive distractors. The design of an inpatient hospice can offer a platform through which to support the delivery of flexible care practices, providing opportunities for personal expression, shared experiences, and the maintenance or development of rituals.
The aims of this study are to clarify the state of information regarding opioids for families and what kinds of experiences they had with opioids while the patient was followed as an outpatient and inpatient.
This study was part of a cross-sectional nationwide survey of bereaved families of patients with cancer, namely, the Japan Hospice and Palliative Care Evaluation 2 study. The participants in this study comprised 572 bereaved families who had experienced the death of a family member during the period from January 2008 to December 2009 at 1 of 103 certificated palliative care units.
In response to the question of "how much improvement was needed for information regarding opioids," 41% answered "improvement is not necessary at all," 43% answered "improvement is slightly necessary," 14% answered "improvement is necessary," and 2% answered "improvement is extremely necessary." Regarding anxiety about the use of opioid, it was found that 14% of respondents indicated "opioids are very safe," 65% of respondents indicated "opioids are relatively safe," 19% of respondents indicated "opioids are not so safe," and 2% of respondents indicated "opioids are not so safe at all." from the information obtained for opioids. It was found that 90% of families agreed with the item, "I would like to be clearly explained that drugs for medical purposes are safe and that the patient will not develop a drug addiction and their life expectancy will not be reduced."
From this study, it is important for families of patients with cancer to be explained profound and careful information of opioid.
Compared to other regions of the world, palliative care (PC) in the Eastern Mediterranean region is at an earlier stage of development. The Palliative Care Center of Kuwait (PCC-K) was established a few years ago as the first stand-alone PC center in the region. This study was conducted to investigate the timing of referral to the PCC-K and its outcome.
Retrospective review of referrals to the PCC-K during its first 3 years of action. Late referral was defined as referral during the last 30 days of life.
During the 3-year period, 498 patients with cancer were referred to the PCC-K of whom 467 were eligible for analysis. Referral was considered late in 58% of patients. Nononcology facilities were more likely to refer patients late when compared to oncology facilities (P = .033). The palliative performance scale (PPS) was ≤30 in 59% of late referrals and 21% in earlier referrals (P < .001). Among 467 referred patients, 342 (73%) were eligible for transfer to the PCC-K, 102 (22%) were ineligible, and 23 (5%) died before assessment by the PCC-K consultation team. From the 342 eligible patients, the family caregivers refused the transfer of 64 (19%) patients to the PCC-K.
Patients are frequently referred late to the PCC-K. Further research to identify barriers to PC and its early integration in Kuwait is required. The PPS may be useful in identifying late referrals.
This study contributes to the sparse body of literature examining perceptions of coping among Latino men and women with a cancer diagnosis living in the United States. There are currently 50 million Latinos in the United States and, by 2050, projected to grow to 128 million. Although some research indicates that Latinos have unique sociocultural beliefs that influence their cancer care, very little is known about their perceptions of coping after being diagnosed with cancer. We examined Latino men and women’s perceptions of coping to understand the meaning of their experience with cancer
Using criterion sampling technique, 60 immigrant and migrant Latino men and women diagnosed with cancer within the past 5 years were recruited from community-based organizations, clinics, and churches. The study consisted of 60- to 90-minute semistructured interviews asking open-ended questions pertaining to coping. The qualitative design facilitated an understanding of coping within the participants’ social and cultural contexts.
Median age of the participants was 55 years. Among the women, 80% had breast cancer; 12% had ovarian cancer; and 8% had throat, thyroid, stomach, or skin cancers. Among the men, 94% had prostate cancer and 6% had brain, colorectal, or lung cancers. Emerging themes associated with the development of coping strategies involved positive reframing, family support, religion and spirituality, and support from health care providers. The term "positive reframing" relates to finding meaning and positive emotions that help sustain the coping process, despite having a cancer diagnosis. In addition, when medical and helping professionals provided tangible support, participants engaged in meaning-based coping.
This study provides insights regarding the existing coping strategies which Latinos utilize and provides clinician-tangible information pertaining to participant’s engagement in meaning-based coping. Family support facilitated coping among the Latino men and women. The role of religion and spirituality in the lives of the participants enabled them to cope with the cancer diagnosis. Future research is necessary to examine coping strategies regarding specific cancers at end of life.
Although patients prefer that physicians initiate advance care planning (ACP) conversations, few physicians regularly do so. Physicians may be reluctant to initiate ACP conversations because they lack self-efficacy in their skills. Yet, no validated scale on self-efficacy for ACP exists. Our objective was to develop a scale that measures physicians’ ACP self-efficacy (ACP-SE) and to investigate the validity of the tool.
Electronic questionnaires were administered to a random sample of family medicine physicians (n = 188). Exploratory factor analysis was performed to determine whether the scale was multidimensional. An initial assessment of the scale’s validity was also conducted.
The exploratory factor analysis indicated that a single factor was appropriate using all 17 items. A single, unidimensional scale was created by averaging the 17 items, yielding good internal consistency (Cronbach α = 0.95). The average scale score was 3.94 (standard deviation = 0.71) on a scale from 1 to 5. The scale was moderately correlated with a global single-item measure of self-efficacy for ACP (r = .79, P < .001), and the scale differentiated between physician groups based on how much ACP they were doing, how recently they had an ACP conversation, formal training on ACP, and knowledge of ACP. In a multivariate analysis, the ACP-SE scale was a strong predictor of the percentage of patients with chronic life-limiting diseases with whom the physician discussed ACP.
The final ACP-SE scale included 17 items and demonstrated high internal consistency.
Currently more than 5800 hospice organizations operate in the United States.1 Hospice organizations are required by the Centers for Medicare and Medicaid Services (CMS) to use volunteers for services provided to patients.2 Although CMS regulates the amount of hours hospice volunteers should provide, there are currently no national requirements for objectives of training.3 The purpose of this study was to gather information from a sample of hospices regarding volunteer coordinator background, current training for volunteers, importance of training objectives, and any comments regarding additional objectives.
Representative state hospice organizations were contacted by e-mail requesting their participation and distribution of the survey throughout their member hospices. The survey asked demographical questions, along with ratings of training components based on perceived level of importance and time spent on each objective.
A total of 90 surveys were received, and the response rate was undeterminable. Results showed the majority of hospices were nonprofit, had less than 100 currently trained volunteers, and maintained an average daily patient census of less than 50. Questions regarding training programs indicated that most use live lecture methods of approximately 19 hours or less in duration. Overall, responding hospice organizations agreed that all objectives surveyed were important in training volunteers.
The small number of respondents to this survey makes generalization nationwide difficult, however it is a strong starting point for the development of further surveys on hospice volunteer training and achieving a standardized set of training objectives and delivery methods.
To compare the effectiveness, adverse effects, and cost-effectiveness of percutaneous neurolytic celiac plexus block (NCPB) versus traditional medication strategies for the treatment of patients with advanced cancer having severe upper abdominal cancer pain.
This retrospective study included 81 patients with advanced upper abdominal cancer admitted to The Sixth People’s Hospital Affiliated to Shanghai Jiaotong University between January 2013 and July 2014. The patients were divided into percutaneous NCPB (treatment) and medication for pain (control) groups. The outcomes were measured in terms of Numeric Rating Scale (NRS) score and Karnofsky Performance Status (KPS) score before treatment and on the 3rd, 7th, 14th, and 28th days posttreatment. The effectiveness and cost-effectiveness of the therapy were assessed using analysis of the health economics.
The improvements in NRS score (1.42 ± 1.09 vs 4.03 ± 0.96, P < .01) and KPS score (65.55 ± 9.09 vs 63.03 ± 8.961, P < .01) in the treatment group were significantly superior compared to the control group on the 7th day of treatment, followed by no significant difference between the 2 groups on the 14th and the 28th day of treatment. Health economics evaluation revealed that the medicine-specific costs and total health care costs were significantly reduced in the treatment group compared to the control group (P < .05), but no significant differences between the 2 groups (P > .05) were seen in the costs of hospitalization, examinations, and treatment.
The percutaneous NCPB method shows promising results and better cost-effectiveness for treating patients with advanced cancer having severe upper abdominal pain.
Palliative care aims to reduce symptom burden and enhance quality of life for those with terminal disease. Ultrasound has become an increasingly popular diagnostic and therapeutic modality due to its low cost, ease of portability, safety, and good patient acceptance. A review of the literature to date shows that as a diagnostic tool, as a therapeutic modality, and as a tool to accurately guide palliative procedures, ultrasound can have many roles in palliative care and hospice. Based on our clinical experience, musculoskeletal ultrasound can be of benefit to patients with terminal disease. Examples include adhesive capsulitis in advanced neurologic disease and chronic osteomyelitis in a patient with metastatic colon cancer. Ideally, further studies investigating the use of ultrasound in the palliative care population will be conducted in the future to enhance the availability of diagnostic and therapeutic capabilities of this particular modality.
A significant number of advanced cancer admissions to the intensive care unit (ICU) are inappropriate in that they do not result in prolonged survival. No clear consensus criteria for reasonable admissions of advanced cancer patients have been developed.
We established four criteria for reasonable admissions to ICU in patients who suffered from advanced, incurable cancer: post procedure complication, recent notification of cancer, ECOG performance status of 0-1, and life expectancy of more than 6 months. Based on these criteria, we reviewed the charts of all patients who died in the ICU at the University of Tennessee Health Science Center (UTHSC) affiliated Veteran’s Affairs Medical Center between 10/2005 and 10/2010. We identified patients with advanced, incurable cancer and performed an in depth review of their charts.
In the 421 charts of patients who died in our ICU between October 2005 and October 2010 we identified 52 patients admitted to the ICU with advanced, incurable cancer. 14 patients were diagnosed with cancer one month or less prior to admission. 21 patients had ECOG performance status of 0-1. 14 patients had life expectancy of more than 6 months and 8 patients were admitted for post procedure complication. 47% of patients who did not satisfy any of our reasonable admission criteria had APDs.
Incorporating proposed admission criteria in ICU admission guidelines may prevent 37% of inappropriate, advanced cancer admissions to the ICU. A simple increase in numbers of APDs would not likely change significantly the numbers of inappropriate ICU admissions.
Decision making in terminal illness has recently received increased attention. In Japan, patients and their families typically make decisions without understanding either the severity of illness or the efficacy of life-supporting treatments at the end of life. Japanese culture traditionally directs the family to make decisions for the patient. This descriptive study examined the influence of the experiences of 391 Japanese nurses caring for dying patients and family members and how that experience changed their decision making for themselves and their family members. The results were mixed but generally supported the idea that the more experience nurses have in caring for the dying, the less likely they would choose to institute lifesupport measures for themselves and family members. The results have implications for discussions on end-of-life care.
Impeccable assessment of symptoms is central to palliative care (PC) practice.
The study objectives are (1) to test the validity of the Arabic Questionnaire for Symptom Assessment (AQSA) as a self-administered (SA) tool for assessing the severity of the listed symptoms among PC patients and (2) to test the validity of AQSA when completed by a proxy.
The AQSA is a tool for assessing the severity of 11 symptoms in addition to the overall suffering experience on a 0 to 10 numeric scale. Symptom scores on the SA AQSA were compared to scores obtained through interviews with patients. The same procedure was repeated with patients’ sitters to explore the validity of using the tool for symptom assessment by proxy.
The study involved 107 pairs (a patient and a sitter, each) with a mean age of 46.3 years (females 59.8%) for patients and 35.9 years (females 65.7%) for sitters. The correlation coefficient (r) for agreement between SA and interview-based (IB) scores for patients ranged from .65 (P < .0001) for drowsiness to .86 (P < .0001) for pain. The SA AQSA showed positive correlation between sitters’ and patients’ scores, with r ranging from .28 (P = .004) for depression to .62 (P ≤ .0001) for vomiting.
The strong positive correlation between SA and IB AQSA indicates that the former is a valid tool. When the SA AQSA is used by proxy, it showed moderate to strong positive correlation with patients’ actual scores for most of the symptoms.
Hospice admission assessment is a pivotal encounter for patient/family and hospice representative. For patient/family, the admission is the threshold by which a particular level of care can commence and, symbolically, a certain marker in health status trajectory is reached. For hospice representative, the admission episode is an occasion to inaugurate an ambience that can serve to frame future hospice care experiences for the patient/family. Through a narrative lens, hospice admission assessment can be seen as experiential time and space, where patient’s and family’s stories are mindfully and deliberately witnessed and explored. Through the practice of narrative mining, the hospice representative can better understand others’ offered stories of reality, which will better inform the plan of palliation and hospice care.
Delirium is a complex but common disorder in palliative care with a prevalence between 13% and 88% but a particular frequency at the end of life yet often remains insufficiently diagnosed and managed. The aim of our study is to determine the frequency of delirium and identify factors associated with delirium at palliative care unit.
Two hundred thirteen consecutive inpatients from October 1, 2012, to March 31, 2013, were studied prospectively. Age, gender, Palliative Performance Scale (PPS), Palliative Prognostic Index (PPI), length of stay in hospital, and delirium etiology and subtype were recorded. Delirium was diagnosed with using Delirium Rating Scale (DRS) and Diagnostic and Statistical Manual of Mental Disorders, 4th Edition Text Revision (DSM-IV TR) criteria.
The incidence of delirium among the patients with cancer was 49.8%. Mean age was 60.3 ± 14.8 (female 41%, male 59%, PPS 39.8%, PPI 5.9 ± 3.0, length of stay in hospital 8.6 ± 6.9 days). Univariate logistic regression analysis indicated that use of opioids, anticonvulsants, benzodiazepines, steroids, polypharmacy, infection, malnutrition, immobilization, sleep disturbance, constipation, hyperbilirubinemia, liver/renal failure, pulmonary failure/hypoxia, electrolyte imbalance, brain cancer/metastases, decreased PPS, and increased PPI were risk factors. Subtypes of delirium included hypoactive 49%, mixed 41%, and hyperactive 10%.
The communicative impediments associated with delirium generate distress for the patient, their family, and health care practitioners who might have to contend with agitation and difficulty in assessing pain and other symptoms. To manage delirium in patients with cancer, clinicians must be able to diagnose it accurately and undertake appropriate assessment of underlying causes.
Physical therapy encompasses the skilled treatment and care for patients across the life span through a multitude of different practice settings. This includes caring for individuals within end-of-life or palliative care settings. The goal of treatment in this stage of care is to relieve physical, social, psychological, and spiritual suffering in order to improve overall quality of life in patients with terminal illnesses. There has been limited research conducted to investigate the utilization of physical therapy interventions in palliative care settings.
The purpose of this study was to contribute to the current research involving physical therapy and end-of-life care in terms of its efficacy, value, and how this value is perceived by patients and their caregivers.
This was completed by independently screening and reviewing the studies that were published between the years 1994 and 2014 and related to this topic. The databases and journals searched included CINAHL, PUBMED, MEDLINE, Cochrane, PEDro, the Journal of Palliative Care, the American Journal of Hospice and Palliative Medicine, and Google Scholar.
Thirteen qualitative articles were selected which met all inclusion criteria and discussed the role of physical therapy intervention in the palliative care setting. Methodological quality of articles were assessed using the QASP, scale and their findings were summarized and presented in table format.
These articles support the utilization of physical therapy in palliative care settings and emphasizes the impact of physical therapy on improving patients’ physical, social, and emotional well-being.
Normochromic normocytic anemia is a common complication in chronic kidney disease (CKD) and is associated with many adverse clinical consequences. Erythropoiesis-stimulating agents (ESAs) act to replace endogenous erythropoietin for patients with end-stage renal disease having anemia. Today, ESAs remain the main tool for treating anemia associated with CKD. In current practice, the use of ESA is not limited to the patients on renal replacement therapy but has extended to nondialysis patients under palliative care (PC). Current evidence on ESA usage in patients with CKD decided to forego dialysis often have to take reference from studies conducted in other groups of patients with CKD, including pre-dialysis patients and those on renal replacement therapy. There is paucity of studies targeting use of ESAs in renal PC patients. Small-scale retrospective study in renal PC patients had suggested clinical advantage of ESAs in terms of hemoglobin improvement, reduction in fatigue, and hospitalization rate. With the expected growth in elderly patients with CKD decided to forego dialysis and manage conservatively, there remains an urgent need to call for large-scale prospective trial in exploring efficacy of ESAs in this population, targeting on quality of life and symptoms improvement outcome. This article also reviews the mechanism of action, pharmacology, adverse effects, and clinical trial evidence for ESA in patients with CKD under renal PC.
Gastrointestinal tract cancers account for a significant proportion of the national cancer burden.
We sought to explore patient- and hospital-level determinants of palliative care utilization among patients hospitalized with metastatic gastrointestinal tract cancers using a national database.
An analysis of the 2012 National Inpatient Sample was performed. International Classification of Diseases, Ninth Revision codes were used to identify hospital discharges associated with metastatic digestive tract cancers and patient/hospital covariates for inclusion in a logistic regression model. Total charges and length of stay were analyzed in a linear regression model.
Compared to males, females were more likely to receive inpatient palliative care (adjusted odds ratio [OR] 1.12, P = .002). No difference was seen between white and Asian patients (adjusted OR 1.2, P = .11) or Native Americans patients (adjusted OR 1.4, P = .22). However, relative to white patients, African Americans (adjusted OR 1.13, P = .02) and Hispanics (adjusted OR 1.25, P = .001) had significantly higher odds of inpatient palliative care. Medicare patients were least likely to receive palliative care compared to those with Medicaid or commercial payers. Length of stay during these hospitalizations was longer in African Americans (P = .0001), Asians (P = .0001), and Native Americans (P = .03) compared to white patients. No difference was seen when total charges were compared between white and African American patients (P = .08). Conversely, total charges were higher in Hispanics (P = .005) and Asians (P = .001) relative to white patients.
Gender and racial differences exist in utilization of inpatient palliative care among patients hospitalized with metastatic gastrointestinal tract cancers.
There has been a growing trend in addressing spiritual needs in caring for the person, especially nearing the end of one’s life. Advance care planning (ACP) facilitates understanding of preferences and explores the spiritual and existential aspects of care. This study explores the views and preferences of a group of Catholic nuns in Singapore, specifically looking at what was meaningful and valuable to them when determining treatment options at the end of life. Twenty-three nuns were purposively recruited in July 2012. A focus group discussion was conducted after administration of a questionnaire and attendance at a 1-hour talk on ACP. Slightly more than half had heard of ACP prior to the talk. The majority agreed that ACP was not against their religious beliefs" and that quality of life was important to them. The themes that emerged from this study were autonomy and freedom, spirituality and quality of life, and the meaning of ACP. The findings of this study suggested that spirituality and faith define the way the participants lived their lives, including their views and preferences on end-of-life care. Integrating spirituality into an essential domain of care will help the spiritual community honor a crucial part of end-of-life discussions and afford a greater discernment of the deep meaning that ACP holds.
Morphine is the first-choice drug for moderate-to-severe cancer pain, nevertheless, some patients do not achieve adequate pain relief or exhibit intolerable side effects. The purpose of this study was to establish whether the analgesic effect of morphine improves in patients with cancer when administered in combination with magnesium.
Randomized double-blind study was conducted with 40 patients older than 18 years with cancer pain using morphine. Group 1 (G1) patients were given magnesium sulfate (65 mg elemental magnesium) twice per day by the oral route. Group 2 (G2) patients were given placebo twice per day. All the patients were administered morphine as needed. They were also given acetaminophen at 2 to 3 g/d. Adjuvants could be used when indicated. The following variables were assessed: pain intensity on a numeric scale at baseline and at weeks 1, 2, 3, and 4; functional performance and quality of life at baseline and week 4; and dose of morphine used.
No difference was found between the groups as to pain intensity, dose of morphine used, functional performance, quality of life, or side effects. The average daily dose of morphine increased gradually, being significant in G2.
The use of morphine combined with elemental magnesium at a dose of 65 mg twice per day by patients with cancer did not induce a better analgesic effect, did not improve their functional performance or quality of life, and did not reduce the occurrence of side effects. The dose of morphine increased significantly in G2.
Breakthrough pain (BTP) arising due to rib metastasis is very distressing and often very difficult to manage by titration of traditional analgesics. This study is undertaken to determine the efficacy of radiofrequency (RF) treatment of intercostal nerves for the prevention of BTP.
The RF treatment of the intercostal nerves was carried out in 25 patients with uncontrolled BTP arising out of the rib metastasis. The intensity and episode of BTP, background pain, opioid dose, functional status (Karnofky score), and quality of life (Short-Form Health Survey [SF-36]) were noted at baseline visit and subsequently after the RF treatment.
After the RF treatment, there was more than 50% decrease in both intensity and frequency of BTP in more than 50% of patients for 3 months, and there was more than 50% decrease in BTP opioid dose in more than 50% of patients throughout the study period. There was also significant improvement in background pain, functional status, and the quality of life after the RF. Interestingly, pain relief, lowering of opioid dose, and functional status improvement were found mostly in patients with mixed and neuropathic type of pain and in patients in whom the metastasis were confined to the ribs only.
RF of the intercostal nerves is effective in preventing and deceasing the severity of BTP arising due to rib metastasis in selected group of patients with mixed and neuropathic type of pain and with the metastasis involving the ribs only.
There is a growing need for home-based palliative care services, especially for seriously ill individuals who want to avoid hospitalizations and remain with their regular outside care providers.
To evaluate the effectiveness of Care Choices, a new in-home palliative care program provided by the Visiting Nurse Services of Northeastern New York and Ellis Medicine’s community hospital serving New York’s Capital District.
This prospective cohort study assessed patient outcomes over the course of 1 year for 123 patients (49 men and 74 women) with serious illnesses who were new enrollees in the program. Quality of life was assessed at baseline and after 1 month on service. Satisfaction with care was measured after 1 and 3 months on service. The number of emergency department visits and inpatient hospitalizations pre- and postenrollment was measured for all enrollees.
Patients were highly satisfied (72.7%-100%) with their initial care and reported greater satisfaction (P < .05) and stable symptom management over time. Fewer emergency department (P < .001) and inpatient hospital admissions (P < .001) occurred among enrollees while on the palliative care service.
An in-home palliative care program offered jointly through a visiting nurse service and community hospital may be a successful model for providing quality care that satisfies chronically ill patients’ desire to remain at home and avoid hospital admissions.
Rapidly aging populations and increased prevalence of chronic rather than acute illnesses have seen growing public and professional interest in medical decision making at the end of life and greater attention being paid to the factors that influence how individuals make such decisions. This study comprised 2 components: The first, a postal survey, based on the Remmelink questionnaire was sent in May 2013 to 3420 general practitioners (GPs) in New Zealand. Results from this component are reported elsewhere. The second component (reported here) sought information by inviting GPs to ring a free-phone number to be interviewed about their experiences caring for their dying patients. Interviews were recorded then transcribed with identifying information deleted to preserve anonymity. With an aging population, the provision of end-of-life care will increase in general practice. There is no doubt that hospice and specialist palliative care have transformed the quality of care for the dying and their families in New Zealand. However, while respondents in this study seemed realistic about what palliative care can and cannot achieve, patients and their families may have unrealistic expectations of both hospice and palliative medicine. Many GPs appear confused over the legality of the assistance they provide to the terminally ill, concerned that actions such as increasing medication to address refractory symptoms, or stopping food and fluids may put them at risk of legal censure when they foresee that their actions may hasten death.
The ability to communicate serious news to patients and families in a caring and compassionate way is a critical skill for physicians. This study explores the impact of a novel communication skills workshop that included bereaved parents in role play on pediatric residents’ confidence to communicate serious news.
Following the workshop, pediatric residents were surveyed to assess their perceived efficacy of the educational intervention. The survey included anchored response and open-ended questions to yield qualitative and quantitative results.
After completing the workshop, residents’ confidence in discussing goals, managing emotions, and expressing empathy all increased significantly. Residents reported that the inclusion of bereaved parents was beneficial since it made the experience more realistic. In addition, they believed their ability to communicate with patients and families had improved.
Including bereaved parents in this communication skills workshop improved the residents’ confidence in discussing serious topics and enhanced the reality of the experience.
Neonatal nurses face numerous barriers in providing end-of-life (EOL) care for neonates and their families. Addressing neonatal nurses’ attitudes could provide insight into barriers that impede neonatal palliative care (NPC). This study thus conducted to examine neonatal nurses’ attitude toward barriers in providing NPC in Southeast Iran.
In this cross-sectional study, a translated modified version of Neonatal Palliative Care Attitude Scale was used to examine attitudes of 70 nurses toward barriers of palliative care in 3 neonatal intensive care units in Southeast Iran.
Findings indicated that overall 42.63% of nurses were strongly agreed or agreed with the proposed barriers in NPC. Among all categories, the highest and the lowest scores belonged to the categories of "insufficient resources" (3.42 ± 0.65) and "inappropriate personal and social attitudes" (2.33 ± 0.48), respectively. Neonatal nurses who had less education and study regarding NPC reported the presence of more barriers to NPC in the categories of "inappropriate organizational culture" and/or "inadequate nursing proficiency." Also, younger nurses had more positive attitudes toward the category of inappropriate organizational culture as being a barrier to provision of NPC (4.62).
The findings suggest that developing a context-based instrument is required to represent the barrier more precisely. Neonatal palliative care can be improved by establishing a special environment to focus on infants’ EOL care. This establishment requires standard palliative care guidelines and adequate NPC-trained nurses.
To review all episodes where an emergency code was called in a cancer-specialized hospital in Pakistan and to assess survival to discharge among patients who received a cardiopulmonary resuscitation (CPR).
We reviewed demographic and clinical data related to all "code blue" calls over 3 years. Multivariate logistic regression analyses were used to test the association of clinical characteristics with the primary outcome of survival to discharge.
A total of 646 code blue calls were included in the analysis. The CPR was performed in 388 (60%) of these calls. For every 20 episodes of CPR among patients with cancer of all ages, only 1 resulted in a patient’s survival to discharge, even though in 52.2% episodes there was a return of spontaneous circulation. No association was found between the type of rhythm at initiation of CPR and likelihood of survival to discharge.
The proportion of patients with advanced cancer surviving to discharge after in-hospital CPR in a low-income country was in line with the reported international experience. Most patients with cancer who received in-hospital CPR did not survive to discharge and did not appear to benefit from resuscitation. Advance directives by patients with cancer limiting aggressive interventions at end of life and proper documentation of these directives will help in provision of care that is humane and consonant with patients’ wishes for a dignified death. Patients’ early appreciation of the limited benefits of CPR in advanced cancer is likely to help them formulate such advance directives.
Patients with advanced hematological malignancies are less likely to be referred to specialist palliative care services compared with patients having solid tumors. It has been reported that one of the most important reasons for the lack of referral is difficulties in the prognostication of terminally ill patients with hematologic malignancies. The study objective was to evaluate the predictive accuracy of the Palliative Prognostic Index (PPI) and the prognostic model developed by Kripp et al in hospitalized patients under the care of a hematologist. Using clinical charts, we retrospectively calculated the above scores. We reviewed the records of 114 patients admitted to the hematology ward. The inclusion criterion was patient with disease considered incurable using standard treatments. The prognostic models were assessed according to the original reports. Using PPI cutoff points of 2 and 4, we divided the patients into 3 groups of significantly different survival times (P < .01). Moreover, we confirmed the usefulness of predicting survival <3 and <6 weeks using PPI scores of 6 and 4 as cutoff points, respectively. When we classified patients according to the prognostic model of Kripp et al, the high-risk group survived significantly shorter times than the intermediate- and low-risk groups (P < .001). However, there was no significant difference in survival between the intermediate- and low-risk groups. Use of these models might enable physicians to provide more appropriate end-of-life care and to refer patients to palliative care earlier.
Delirium is a palliative care emergency where patients experience changes in perception, awareness, and behavior. Common features include changes in the sleep–wake cycle, emotional lability, delusional thinking, and language and thought disorders. Delirium results from neurotransmitter imbalances involving several neurotransmitters such as dopamine, glutamate, norepinephrine, acetylcholine, gamma-aminobutyric acid, and serotonin. Untreated delirium causes significant morbidity and mortality. Nonpharmacologic and pharmacologic approaches treat delirium. Current pharmacologic management of delirium involves using agents such as haloperidol or second-generation antipsychotics. Third-generation atypical antipsychotic drugs have emerged as a potential choice for delirium management. Aripiprazole is a third-generation antipsychotic with a dopamine receptor-binding profile distinct from other second-generation antipsychotics. Aripiprazole acts as partial agonist at dopamine D2 and 5-hydroxytryptamine (5-HT)1A receptors, stabilizing the dopamine receptor leading to improvement in symptoms. The article reviews the pharmacology, pharmacodynamics, metabolism, and evidence of clinical efficacy for this new antipsychotic agent. This article explores possible roles in palliative care.
The hidden curriculum, or the socialization process of medical training, plays a crucial role in the development of physicians, as they navigate the clinical learning environment. The purpose of this qualitative study was to examine medical faculty and students’ perceptions of psychological, moral, and spiritual challenges during medical training in caring for critically ill patients. Focus groups were conducted with 25 Harvard Medical School (HMS) students, and interviews were conducted with 8 HMS faculty members. Five major themes emerged as important in shaping students’ medical training experiences. First, students and faculty discussed the overall significance of the hidden curriculum in terms of the hierarchy of medicine, behavioral modeling, and the value placed on research versus clinical work. Second, respondents articulated values modeled in medicine. Third, students and faculty reflected on changes in student development during their training, particularly in terms of changes in empathy and compassion. Fourth, respondents discussed challenges faced in medical school including professional clinical education and the psychosocial aspects of medical training. Finally, students and faculty articulated a number of coping mechanisms to mitigate these challenges including reflection, prayer, repression, support systems, creative outlets, exercise, and separation from one’s work. The results from this study suggest the significance of the hidden curriculum on medical students throughout their training, as they learn to navigate challenging and emotional experiences. Furthermore, these results emphasize an increased focus toward the effect of the hidden curriculum on students’ development in medical school, particularly noting the ways in which self-reflection may benefit students.
Most bereaved people do not require specialist intervention, yet building community capacity in providing bereavement support is underdeveloped. While family caregivers indicate a need for more information about bereavement, there is little evidence to guide what this information might contain.
The study’s purpose was to inform bereavement support by determining the advice people bereaved through expected deaths in palliative care have for others in that situation.
Four funeral providers posted a questionnaire to previous clients who had used their services 6 to 24 months prior and 678 bereaved people responded.
The sample size for this study comprised 265 bereaved people whose relative used palliative care services.
The questionnaire comprised 82 questions about caregiving, bereavement support, current bereavement-related distress, and 2 open-ended questions concerning their bereavement, one of them on advice they have to other people in the same situation.
Family caregivers (n = 140) of people who received palliative care responded to the open-ended question about advice for others. An open content analysis yielded 3 themes—preparations for bereavement, utilizing social networks, and strategies for dealing with grief.
Bereaved family caregivers’ experiential knowledge can be harnessed to progress the development of bereavement care strategies for the good of the community. These responses could be incorporated into information brochures, posters, and other community education avenues in order to upskill palliative care bereavement volunteers and the wider community so that bereaved family caregivers are best supported.
Americans rely on the Internet for health information, and people are likely to turn to online resources to learn about palliative care as well. The purpose of this study was to analyze online palliative care information pages to evaluate the breadth of their content. We also compared how frequently basic facts about palliative care appeared on the Web pages to expert rankings of the importance of those facts to understanding palliative care.
Twenty-six pages were identified. Two researchers independently coded each page for content. Palliative care professionals (n = 20) rated the importance of content domains for comparison with content frequency in the Web pages.
We identified 22 recurring broad concepts about palliative care. Each information page included, on average, 9.2 of these broad concepts (standard deviation [SD] = 3.36, range = 5-15). Similarly, each broad concept was present in an average of 45% of the Web pages (SD = 30.4%, range = 8%-96%). Significant discrepancies emerged between expert ratings of the importance of the broad concepts and the frequency of their appearance in the Web pages (r = .25, P > .05).
This study demonstrates that palliative care information pages available online vary considerably in their content coverage. Furthermore, information that palliative care professionals rate as important for consumers to know is not always included in Web pages. We developed guidelines for information pages for the purpose of educating consumers in a consistent way about palliative care.
Patients nearing the end of life may experience symptoms that are refractory to standard therapeutic options. Physicians may consider palliative sedation to relieve intolerable suffering. There is limited clinical literature regarding preferred medications for palliative sedation.
To determine the preferred medications physicians use when implementing palliative sedation.
An Internet-based, cross-sectional survey of hospice and palliative care physicians in the United States.
A link to the survey was e-mailed to 3130 physician members of the American Academy of Hospice and Palliative Medicine, of which 381 physicians completed the survey. Physicians were not required to answer all questions. Nearly all (n = 335, 99%) respondents indicated that palliative sedation may be used (acceptable by 73% [n = 248] for refractory symptoms and acceptable by 26% [n = 87] only for imminently dying patients). Seventy-nine percent (n = 252) believed that opioids should not be used to induce palliative sedation but should be continued to provide pain control. Midazolam was the most commonly selected first-line choice for palliative sedation (n = 155, 42%). The most commonly reported second-line agents for the induction of palliative sedation were lorazepam, midazolam (for those who did not select midazolam as first-line agent), and phenobarbital with a reported preference of 20% (n = 49), 19% (n = 46), and 17% (n = 40), respectively.
Of the physicians surveyed, 99% (n = 335) felt that palliative sedation is a reasonable treatment modality. Midazolam was considered a drug of choice for inducing and maintaining sedation, and opioids were continued for pain control.
Research on inpatient palliative medicine reports quality-of-life outcomes and selected "hard" outcomes including pain scores, survival, and readmissions.
This case study reports the evolution of an inpatient palliative consultation (IPC) team to show how IPC induces culture change in a hospital that previously had no palliative care.
Retrospective chart review.
A Catholic university-affiliated, inner-city hospital.
A total of 1700 consecutive adult inpatients from May 2009 to October 2013.
Consultation records enumerated demographics, code status, powers of attorney, referring physician, reason for consultation, and discharge destination. Deidentified data were uploaded to a spreadsheet. Simple descriptive statistics were calculated.
Requests originated from internal medicine (24%), geriatrics (21%), neurology (including stroke and neurosurgery, 14.3%), medical intensive care unit (MICU, 12.2%), and hematology–oncology (10.3%). The MICU consults increased 17.6% over time. The numbers of consults nearly doubled after trainees began rounding with the service. Hospice discharges increased by 9.2%. Palliative management of in-hospital expirations increased 2- to 3-fold. The most common consultation requests were for pain and nonpain symptoms, establishing goals of care for patients experiencing clinical decline and convening family meetings in cases of divided judgment.
We describe the evolution of palliative care in a safety-net hospital. Medicine services which are largely resident run adopted early. Specialty services that are attending driven adopted later. We believe house staff and nurses were the initial change agents. The number of consultations increased when house staff and students began rotating on the service suggesting unmet demand due to the limited supply of providers.
Intrathecal analgesia is more effective than conservative delivery methods such as drugs administered orally or intravenously. Programmable devices such as Medtronic’s SynchroMed systems have often been applied for long-term intrathecal analgesia. However, the totally implanted systems are very expensive in China. Considering cost-effectiveness, a reliable transmission protocol for a ZigBee-Based wireless analgesia pump system was used for long-term intrathecal analgesia in the home care of patients.
We retrospectively investigated the efficacy, side effects, and complications of long-term intrathecal analgesia in the home care of patients via the wireless analgesia pump system. Follow-up visits occurred monthly for the initial 3 months after implantation and then every 3 months until patient death, withdrawal from the study, or removal of the device by a designated staff. At each follow-up visit, daily average pain score, pain frequency, satisfaction level, Spitzer Quality of Life Index, and side effects for every patient were recorded.
Pain intensity and frequency were significantly decreased by intrathecal analgesia via a wireless analgesia pump system. There were no significant differences in the satisfaction levels between hospitalization and each follow-up visit. The Spitzer Quality of Life Indexes were improved compared with patients who were hospitalized. No serious side effects were observed in this study.
Intrathecal analgesia is an effective and safe method for control of refractory cancer pain, and wireless analgesia pump systems can be safely and effectively used for long-term intrathecal analgesia management in the home care of patients with advanced cancer.
Fan therapy is often suggested for relieving the symptom of dyspnea in patients with advanced cancer, but relevant literature among Asians is limited.
Phase 2 clinical trial to assess the clinical feasibility and outcome of using an electric fan to alleviate the symptom of dyspnea in Chinese patients with advanced cancer.
Thirty patients with advanced cancer having unresolved breathlessness were recruited from Hospice and Palliative Care Centre of Kiang Wu Hospital in Macau. Participants were randomly and equally allocated to the experimental group and the control group, respectively.
Verbal numerical rating scale (NRS) of breathlessness, respiratory rate (RR), and saturation of peripheral oxygen (SpO2) was collected before and after the intervention.
T test was used to analyze the data collected. There was a significant difference in the NRS scores of the experimental group (P < .01), indicating a significant reduction in the patients’ sensation of breathlessness after fan therapy, whereas no significant difference was found in the objective statistic results of RR and SpO2. No significant difference (P > .05) was found in the control group for all the 3 variables before and after routine treatment.
The results of the study suggested that fan therapy could be effective in alleviating dyspnea in Chinese patients with advanced cancer. It should be considered as one of the nonpharmacological treatment option. Future large-scale phase 3 clinical trials are warranted.
Hospice care is coordinated through an interdisciplinary team (IDT), which assures that a holistic care plan based on the patient’s wishes is implemented. The extent to which an IDT provides quality care may be associated with how effectively they communicate within the team as well as with patients, caregivers, and families. This review seeks to characterize communication strategies among hospice IDT members and to determine how such strategies impact patient care. Although the existing literature sheds some light on communication within hospice IDTs, further research is needed. Inquiry into the communicative process of IDTs in settings other than team meetings, such as during patient visits or informal settings, would provide a more comprehensive representation of how communication influences IDT dynamics and overall team functioning.
Palliative care service (PCS) has been shown to be utilized less in patients with leukemia and malignant lymphoma than in those with solid tumors. Previous studies have suggested hematologists’ limited awareness of PCS as one of the reason for low PCS referral in hematology. However, little is known about such an awareness and potential barriers to collaboration between hematologists and PCS.
The present study aimed to assess ematologists and palliative care specialists’ perception about the roles of the hospital-based palliative care team (HPCT) and the barriers to collaboration between hematologists and palliative care teams on relapse or refractory leukemia and malignant lymphoma patients’ care
A qualitative study was conducted using semistructured interviews with hematologists and palliative care specialists recruited from a hospital that provides hematology and palliative care by the HPCT. Data were evaluated via content analysis.
The study included 11 hematologists and 10 palliative care specialists. Our results revealed that they shared many common perceptions about the roles and expectations of the HPCT. Additionally, 7 categories of barriers to collaboration were identified, including not feeling the need to refer, the difficulty in referral timing, the lack of aggressive approach, the negative image of the HPCT, the need for hematologic malignancy-oriented management, the lack of communication, and others.
We have identified hematologists’ and palliative care specialists’ perceptions of the HPCT’s roles and the barriers to their collaboration. A better understanding of such barriers may lead to effective collaboration between hematologists and the HPCT.
Advance directives (ADs) have traditionally been viewed as clear instructions for implementing patient wishes at times of compromised decision-making capacity (DMC). However, whether individuals prefer ADs to be strictly followed or to serve as general guidelines has not been studied. The Veterans Administration’s Advance Directive Durable Power of Attorney for Health Care and Living Will (VA AD) provides patients the opportunity to indicate specific treatment preferences and to indicate how strictly the directive is to be followed.
To describe preferences for life-sustaining treatments (LSTs) in various illness conditions as well as instructions for the use of VA ADs.
A descriptive study was performed collecting data from all ADs entered into the medical record at 1 VA Medical Center between January and June 2014.
Responses to VA AD with emphasis on health care agents (HCAs) and LW responses.
Veterans were more likely to reject LST when death was imminent (74.6%), when in a coma (71.1%), if they had brain damage (70.6%), or were ventilator dependent (70.4%). A majority (67.4%) of veterans preferred the document to be followed generally rather than strictly. Veterans were more likely to want VA ADs to serve as a general guide when a spouse was named HCA.
Most of the sampled veterans rejected LST except under conditions of permanent disability. A majority intend VA ADs to serve as general guidelines rather than strict, binding instructions. These findings have significant implications for surrogate decision making and the use of ADs more generally.
Research shows variable success as to whether care provided aligns with individual patient preferences as reflected in their advance directives (AD).
We aimed to study AD status and subsequent care received in older nursing home (NH) residents deemed at risk for infections and care transitions: those with a urinary catheter (UC), feeding tube (FT), or both.
A subgroup analysis of a prospective cohort of 90 residents with a UC and/or FT from 15 NHs in southeast Michigan. Outcomes assessed at enrollment and at 30-day intervals were hospitalizations and antibiotic use. The ADs were divided as follows: (1) comfort oriented: comfort measures only, no hospital transfer; (2) palliative oriented: comfort focused, allowing hospital transfer (except intensive care unit), antibiotic use, but no cardiopulmonary resuscitation; (3) usual care: full code, no limitations to care. We calculated incidences for these outcomes.
Seventy-eight (87%) residents had ADs: 18 (23%) comfort oriented, 32 (41%) palliative oriented, and 28 (36%) usual care. The groups did not differ regarding demographics, comorbidity, function, device presence, or time in study. Using the usual care group as comparison, the comfort-oriented group was hospitalized at a similar rate (Incidence rate [IR] = 15.6/1000 follow-up days vs IR = 8.8/1000 follow-up days, Incident rate ratio [IRR] 0.6 [95% confidence interval, CI, 0.3 -1.1], P value .09) but received fewer antibiotics (IR = 18.9/1000 follow-up days vs IR = 7.5/1000 follow-up days, IRR 0.4 [95% CI, 0.2-0.8], P value .005).
Nursing home residents with comfort-oriented ADs were hospitalized at a rate similar to those with usual-care ADs but received fewer antibiotics, although the small sample size of this analysis suggests these findings deserve further study.
When a family member dies, a bereavement period is taking place for all family members. The death of a parent during childhood is a highly stressful event. This study evaluates families’ experiences of family support groups when a parent has died. Families were participate in groups for children, teenagers, young adults, and parents in seven sessions. The same topic which was discussed in all groups. The support groups were evaluated qualitatively and quantitatively. The participants were satisfied with the groups and experienced that the shared experience facilitated bereavement to proceed. The results indicate that families’ experiences is being more open about feelings in their own family. A support group can be one possibility to help the whole family in the bereavement.
High-grade gliomas are the most frequent primary brain tumors. Despite improvement in diagnostics and treatment, survival is still poor and quality-of-life issues are of major importance. Little is known regarding the clinical signs and symptoms of dying patients with glioblastoma.
The aim of this study was to investigate signs and symptoms as well as therapeutic strategies in patients with glioblastoma in the end-of-life phase in order to improve end-of-life care.
In this prospective single-center study, clinical data were obtained using a standardized protocol. We descriptively analyzed signs, symptoms, and therapeutic strategies on a daily basis.
A total of 57 patients, who died due to glioblastoma in a hospital setting, were included. The most frequent signs and symptoms in the last 10 days before death were decrease in level of consciousness (95%), fever (88%), dysphagia (65%), seizures (65%), and headache (33%). Concerning medication, 95% received opioids. There was a high need for nonsteroidal anti-inflammatory drugs (77%) and anticonvulsants (75%). Steroids were given to 56%.
Due to a decrease in level of consciousness and cognitive impairment, assessment of clinical signs and symptoms such as headache at the end of life is difficult. Based on the signs and symptoms in the last days before death in patients with glioblastoma, supportive drug treatment remains challenging. Our study emphasizes the importance of standardized guidelines for end-of-life care in patients with glioblastoma.
Palliative care services extend to meet the needs of patients with nonmalignant diseases.
To explore the diagnoses, symptoms, and treatment of patients dying in hospice due to nonmalignant diseases, with special emphasis on amyotrophic lateral sclerosis (ALS).
A retrospective study based on a detailed analysis of patient records.
All patients with nonmalignant diseases who died in Pirkanmaa Hospice during the period 2004 to 2013 were included.
Of the 67 patients studied, 48% had ALS, and the remaining had pulmonary (18%), cardiovascular (13%), neurologic (10%), and other (10%) diseases. Dyspnea, followed by pain and fatigue, was the most common symptom reported, increasing in frequency from admission to the last day of life (31% vs 48%; P < .05). Compared with ALS, patients with other diseases had more comorbidities (3.8% vs 1.4%, P < .001) and were more likely to have very short (≤3 days) final care periods (31% vs 9%; P < .05). During the last day of life, patients with ALS were more frequently unable to swallow (87% vs 31%, P < .001) and received significantly more antidepressants, antibiotics, and laxatives but less corticosteroids and oxygen compared to other patients. Noninvasive ventilation was used in 31% of all patients.
Respiratory symptoms are important in the management of nonmalignant diseases in hospice. Especially, units taking care of ALS should be prepared to meet the special needs involved in ventilation support. In contrast to ALS, late referrals to hospice are common in patients with other nonmalignant diseases.
Palliative sedation is a means of relieving intractable symptoms at the end of life, however, guidelines about its use lack consistency. In addition, ethical concerns persist around the practice. There are reports of palliative sedation in the pediatric literature, which highlight various institutional perspectives.
This survey of 4786 pediatric providers sought to describe their knowledge of and current practices around pediatric palliative sedation.
Our survey was administered to pediatricians who care for children at the end of life. The survey assessed agreement with a definition of palliative sedation, as well as thoughts about its alignment with aggressive symptom management. Bivariate analyses using 2 and analysis of variance were calculated to determine the relationship between responses to closed-ended questions. Open-ended responses were thematically coded by the investigators and reviewed for agreement.
Nearly half (48.6%) of the respondents indicated that the stated definition of palliative sedation "completely" reflected their own views. Respondents were split when asked if they viewed any difference between palliative sedation and aggressive symptom management: Yes (46%) versus No (54%). Open-ended responses revealed specifics about the nature of variation in interpretation.
Responses point to ambiguity surrounding the concept of palliative sedation. Pediatricians were concerned with a decreased level of consciousness as the goal of palliative sedation. Respondents were split on whether they view palliative sedation as a distinct entity or as one broad continuum of care, equivalent to aggressive symptom management. Institutional-based policies are essential to clarify acceptable practice, enable open communication, and promote further research.
It has been reported that pain relief for patients with cancer is suboptimal in Japan. This has been mainly attributed to inadequate dissemination of the World Health Organization (WHO) guidelines for cancer pain management. To better understand this problem, we reviewed how 6 hospital palliative care teams (HPCTs) used the WHO guidelines for unrelieved pain in a 1-year audit that included 534 patients. The HPCT interventions were classified according to the contents of the WHO guidelines. In our study, HPCT interventions involved opioid prescriptions in >80% of referred patients, and "For the Individual" and "Attention to Detail" were the 2 most important principles. Our study indicates which parts of the WHO guidelines should be most heavily emphasized, when disseminating them in Japan.
More physicians need to acquire the skills of primary palliative care. Medical students’ clerkship experiences with death, dying, and palliative care (DDPC), however, may create barriers to learning such skills during residency. Whether professional development is differentially affected by DDPC is unknown. This knowledge gap potentially hinders the development of educational strategies to optimize students’ preparedness for primary palliative care.
Third-year students submitted professionalism narratives (N = 4062) during their internal medicine clerkship between 2004 and 2011. We identified DDPC-related narratives and then randomly selected control narratives. Narratives were compared by valence (positive or negative) and professionalism-related themes.
Less than 10% of the narratives were related to DDPC, but the majority was positive. There was a significant overlap in professionalism themes between DDPC and control narratives. The results suggest student preparedness for primary palliative care may be improved by addressing the common professionalism challenges of clinical clerkships.
To examine the relationship between pediatric primary care involvement and hospice and home health care use at end of life.
California Medicaid data were used to estimate the relationship between pediatric primary care involvement and use of hospice and home health care using generalized estimating equations.
Of the 2037 children who died between 2007 and 2010, 11% used hospice and 23% used home health. Among all children, primary care was not related to hospice use and was associated with home health use, usual source of care (OR = 1.83, P < .05), comprehensive care (OR = 1.60, P < .05), and continuous care (low: OR = 1.49, P < .05; moderate: OR = 2.57, P < .05; high: OR = 2.12, P < .05). Primary care for children aged 15 to 20 years was related to hospice use, usual source of care (OR = 4.06, P < .05) and continuous care (low: OR = 4.92, P < .05; moderate OR = 4.09, P < .05; high OR = 3.92, P < .05). Primary care for children under 5 years was associated with home health use, usual source of care (OR = 2.59, P < .05), comprehensive care (OR = 2.49, P < .05), and continuous care (low: OR = 2.22, P < .05; moderate: OR = 3.64, P < .05; high: OR = 3.62, P < .05). For children aged 6 to 14 years, this association was seen with continuous care (moderate: OR = 2.38, P < .05; high: OR = 2.13, P < .05). Home health for children aged 15 to 20 years was related to continuous care (moderate: OR = 2.32, P < .05).
Primary care involvement affected hospice use among older age-groups and home health use among younger age-groups. These findings underscore the need for clinical knowledge about end-of-life care for children of all ages among primary care providers.
The aim of this study was to explore the experience of community palliative care nurses providing home care to children.
A qualitative study was conducted at the 3 community palliative care provider organizations in greater Kuala Lumpur from August to October 2014. Data were collected with semistructured interviews with 16 nurses who have provided care to children and was analyzed using thematic analysis. Two categories were identified: (1) challenges nurses faced and (2) coping strategies. The themes identified from the categories are (1) communication challenges, (2) inadequate training and knowledge, (3) personal suffering, (4) challenges of the system, (5) intrapersonal coping skills, (6) interpersonal coping strategies, and (7) systemic supports.
These results reinforces the need for integration of pediatric palliative care teaching and communication skills training into all undergraduate health care programs. Provider organizational support to meet the specific needs of the nurses in the community can help retain them in their role. It will also be important to develop standards for current and new palliative care services to ensure delivery of quality pediatric palliative care.
Research documents a lack of access to, utilization of, and satisfaction with hospice care for African Americans. Models for culturally competent hospice services have been developed but are not in general use. Major organizational barriers include (1) lack of funding/budgeting for additional staff for community outreach, (2) lack of applications from culturally diverse professionals, (3) lack of funding/budgeting for additional staff for development of culturally competent services, (4) lack of knowledge about diverse cultures, and (5) lack of awareness of which cultural groups are not being served. A participatory action research project addressed these organizational barriers through a multicultural social work student field placement in 1 rural hospice. The effectiveness of the student interventions was evaluated, including addressing organizational barriers, cultural competence training of staff, and community outreach. Results indicated that students can provide a valuable service in addressing organizational barriers through a hospice field placement.
To validate the Quality of Dying and Death (QoDD) instrument for health professionals (QoDD-D-MA) and to test its feasibility in 2 German palliative care units (PCUs).
The QoDD was translated from English to German and then retranslated following European Organisation for Research and Treatment of Cancer (EORTC) guidelines. Data were collected in 2 German PCUs to calculate aspects of validity and reliability.
Mean total score was 83.05 (range 49-100; N = 232). The QoDD-D-MA showed satisfactory psychometric properties, Cronbach α = .830; interrater reliability r = .245 (P < .01). The QoDD-D-MA was independent of patients’ demographic and clinical aspects. Some challenges occurred when applying the instrument.
Feasibility could be improved by adapting the QoDD-D-MA to create a self-assessment version and finding a solution for items that result in many missing data. Future research should validate the QoDD-D-MA in other care settings.
Washington State allows marijuana use for medical (since 1998) and recreational (since 2012) purposes. The benefits of medicinal cannabis (MC) can be maximized if clinicians educate patients about dosing, routes of administration, side effects, and plant composition. However, little is known about clinicians’ knowledge and practices in Washington State.
An anonymous online survey assessed providers’ MC knowledge, beliefs, clinical practices, and training needs. The survey was disseminated through health care providers’ professional organizations in Washington State. Descriptive analysis compared providers who had and had not authorized MC for patients. Survey results informed the approach and content of an online training on best clinical practices of MC.
Four hundred ninety-four health care providers responded to the survey. Approximately two-third were women, aged 30 to 60 years, and working in family or internal medicine. More than half of the respondents were legally allowed to write MC authorizations per Washington State law, and 27% of those had issued written MC authorizations. Overall, respondents reported low knowledge and comfort level related to recommending MC. Respondents rated MC knowledge as important and supported inclusion of MC training in medical/health provider curriculum. Most Washington State providers have not received education on scientific basis of MC or training on best clinical practices of MC. Clinicians who had issued MC authorizations were more likely to have received MC training than those who had not issued MC authorization.
The potential of MCs to benefit some patients is hindered by the lack of comfort of clinicians to recommend it. Training opportunities are badly needed to address these issues.
Patients with stage IV cancer and bowel obstruction present a complicated management problem. The aim of this study was to evaluate the role of the palliative care service (PC) in the management of this complex disease process.
A retrospective analysis was conducted of all patients admitted to Roswell Park Cancer Institute with stage IV cancer and bowel obstruction from 2009 to 2012 after the institution of a formal PC. This cohort was matched to similar patients from 2005 to 2008 (no palliative care service or NPC). Patient characteristics and outcomes included baseline demographics, comorbid conditions, do-not-resuscitate (DNR) status, laboratory parameters, medical and surgical management, length of stay, symptom relief, and disposition status.
A total of 19 patients were identified in the PC group. Based on the PC group baseline characteristics, 19 patients were identified for the NPC group using matched values. Regarding outcomes, there were significant differences in the medication regimens (narcotics, octreotide, and Decadron) between the 2 groups. In the PC group, 14 of 19 patients showed improvement compared to 9 of 19 in the NPC group. Nearly 60% of patients in the PC group had a formal DNR order versus 10.5% in NPC (P = .002). A significantly higher percentage of patients were discharged to hospice in the PC group (47.4% vs 0.0%, P = .006).
Palliative care consultation improves the quality of care for patients with stage IV cancer and bowel obstruction, with particular benefits in symptom management, end-of-life discussion, and disposition to hospice.
To assess the conclusiveness of the Cochrane reviews (CRs) in the field of palliative and supportive care for cancer. We searched the CRs on Pain, Palliative, and Supportive Care Group available in the Cochrane library on February 01, 2015, to analyze whether a CR could reach a clinical decision. Each CR was analyzed for conclusiveness, number of randomized controlled trials (RCTs) enrolled, number of participants enrolled, the need for further studies, and the reasons. Only 45% (30 of 66) of the CRs reached definitive clinical recommendations. The number of RCTs and participants enrolled in conclusive CRs were significantly higher than those in inconclusive CRs. Nearly all CRs recognized the need for further studies. The conclusiveness was not affected by the year of publication. We concluded that a large number of clinical trials were not carried out well in the palliative and supportive oncology.
Little is known regarding the extent to which physical therapy is integrated into Hospice and Palliative Care (HPC). The purpose of this study was to describe perceptions of physical therapists (PTs) regarding their role within HPC or working with patients having life-threatening illnesses and to develop a conceptual framework depicting a PTs role within HPC and factors affecting it.
Ten PTs, 5 from the United States and 5 from Canada, with at least 5 years of physical therapy experience and 5 years working experience with patients having life-threatening illnesses or in HPC.
Demographic data were collected by electronic questionnaire. A semistructured interview was conducted with each participant to investigate their perceptions about the role of PTs in HPC.
Interview results were analyzed for trends between participants, practice settings, regions, and other sociocultural aspects. The constant comparative method of qualitative data analysis was used to identify similarities and differences and to develop themes and concepts relative to the role of PT in HPC.
Participants identified their 3 primary roles in HPC: providing patient/family care, serving as an interdisciplinary team member, and fulfilling professional responsibilities outside of direct patient care. They described factors within and outside direct patient care which influenced their roles. Concepts included shifting priorities, care across the continuum, and changing perceptions of PTs within HPC.
This study described perceptions of the role of PTs within HPC that may be utilized when coordinating future strategies to appropriately promote and expand the role.
The purpose of this study was to assess outcomes in patients who have undergone celiac plexus neurolysis (CPN) as treatment for refractory abdominal visceral pain at a tertiary care medical center. This study involved retrospective analysis of all patients who had undergone computed tomography (CT)-guided CPN over a 7-year period, as identified in the medical record. Cases were categorized into 1 of 3 groups—group 1: patients getting at least moderate improvement in pain but with improvements subsiding within 2 days; group 2: patients with some sustained pain relief but still requiring heavy doses of narcotics; group 3: patients with major or complete sustained reduction in pain where the narcotic dose was able to be reduced. One hundred thirty-eight cases were identified, 51 of which had no or insufficient follow-up, leaving 87 cases for analysis. Of the 87 cases, 31 (36%) were categorized as group 1, 21 (24%) as group 2, and 35 (40%) as group 3. There were no statistical differences in outcomes based on patient age, gender, time since diagnosis, or type of cancer. Documented postoperative complications were diarrhea (11 cases) and 1 case each of obtundation, hypotension, and presyncopal event. We conclude that patients undergoing CT-guided CPN for abdominal visceral pain achieve moderate or major short-term pain relief in a majority of cases. The procedure is safe with minimal complications.
While many patients hope to die at home, many die in hospitals. Patients die with unrecognized and untreated symptoms including dyspnea.
We sought to determine prevalence of dyspnea at end of life in patients dying in acute hospital care and examine treatment patterns.
A retrospective chart review of deaths at tertiary care hospital over a 3-month period evaluated dyspnea in last 24 hours of life, opioid orders and administration as well as presence of palliative care consultation.
Of 106 decedents, 88 experienced dyspnea or tachypnea in last 24 hours of life. Health care providers noted only 50% as dyspneic, even those undergoing terminal comfort extubation. Almost all patients with dyspnea documented by staff had orders and received opioids; however, few orders described treatment specifically for dyspnea. Patients with palliative care consultations more often received opioids (P = .0007), and opioid orders more often specified treatment of dyspnea (P = .013).
These findings support that previous work noting many patients experience dyspnea at end of life. Despite national guidelines, health care providers may still be underrecognizing and likely not optimally treating dyspnea at the end of life in the hospital. Collaboration with palliative medicine providers may improve assessments and treatments for quality end-of-life care for hospitalized patients.
Availability of cardiac medications in hospice for acute symptom management of heart failure is unknown. This study explored hospice approaches to cardiac medications for patients with heart failure.
Descriptive study using a quantitative survey of 46 US hospice agencies and clinician interviews.
Of 31 hospices that provided standard home medication kits for acute symptom management, only 1 provided medication with cardiac indications (oral furosemide). Only 22% of the hospice agencies had a specific cardiac medication kit. Just over half (57%) of the agencies could provide intravenous inotropic therapy, often in multiple hospice settings. Clinicians described an individualized approach to cardiac medications for patients with heart failure.
This study highlights opportunities for practice guidelines that inform medical therapy for hospice patients with heart failure.
To assess which laboratory and clinical factors are associated with fatigue in patients with terminal cancer.
We evaluated 51 patients with advanced incurable solid tumors using the Chalder Fatigue Questionnaire (CFQ) and the Functional Assessment of Chronic Illness Therapy-Fatigue (FACIT-F) scale for fatigue; the Pittsburgh Sleep Quality Index (PSQI-BR) for sleep quality; the Hospital Anxiety and Depression Scale (HADS) for anxiety and depression; the European Organization for Research and Treatment of Cancer (EORTC) Core Quality of Life Questionnaire, Version 3.0 (QLQ C-30); and Functional Assessment of Cancer Therapy (FACT) for quality of life. We also analyzed several inflammatory markers and the modified Glasgow prognostic score (mGPS).
We observed severe fatigue in 19 (38%) patients (FACIT-F score >36). There was a significant correlation between fatigue as evaluated by the CFQ and quality of sleep and between the CFQ mental fatigue subscale scores and TNF-α level. When fatigue was evaluated using the FACIT-F scale, we observed a significant association between fatigue and anxiety/depression, quality of sleep, mGPS, and hemoglobin levels. Fatigue measured both with the CFQ and FACIT-F scale correlated with poor quality of life according to the EORTC QLQ C-30.
In patients with advanced cancer, fatigue is a common symptom associated with the presence of inflammation, poor quality of sleep, depression/anxiety, and poor quality of life.
Little is known about the health access and end-of-life (EOL) concerns of persons living with HIV/AIDS (PLWHA) in Appalachia, where religious and cultural values are largely traditional. A qualitative, descriptive study with 9 participants was undertaken to assess EOL care needs among those from South Central Appalachian PLWHA. The focus of the study was to examine subjective data regarding EOL needs assessment related to advanced care planning. Five men and 4 women self-acknowledged a diagnosis of HIV/AIDS and completed a 2-hour face-to-face interview with the nurse researcher. Data were analyzed using qualitative descriptive content analysis methods, including data coding for emergent themes and metaphors. A common metaphor tied content to both struggle and triumph as well as the beauty and ruggedness of the Appalachian region: "Climbing Back up the Mountain." Rich descriptions of the significance of the metaphor match with stigma as the greatest hurdle to overcome in planning and interacting with others, including health care providers and significant others, about EOL care needs and advanced planning preferences. Further, the metaphor was derived directly from quotes offered by participants. Sources of stigma were often intersecting: the disease itself, associations with "promiscuity," sexual minority status, illicit drug use, and so on. Strong spiritual images were contrasted with a common avoidance and disdain of organized religion. Findings were used in refining plans for a larger study of EOL care needs and concerns on the population of PLWHA in 2 Southern Appalachian states. Comparison with other research and insights for providers is included.
Home health services in the United States(US) have been on a rise. Hospice patients cope with diverse physical and pain symptoms; medical devices are used for symptom management to improve their quality-of-care at end-of-life.
Using the National Home and Hospice Care Survey (NHHCS), the study summarizes medical device use for symptom management and tracks various demographic variables for home hospice patients.
A cross-sectional analysis of data using the 2007 NHHCS was conducted. There were 4733 hospice discharges which corresponded to 2,505,011 individuals in US with sampling weights. The data was analyzed using chi square tests and confounding factors adjusted with logistic regression.
Eighty-nine percent of hospice discharges were evaluated for pain at first assessment. The regression model for pain at first assessment was significantly associated with use of patient controlled analgesia (OR = 1.82, 95% CI = 1.28, 2.59) and urinary catheters (OR = 1.16, 95% CI = 1.02, 1.33). Patient with dyspnea were associated with significant use of oxygen (OR = 3.00, 95% CI = 2.64, 3.40) and metered dose inhaler (OR = 2.43, 95% CI = 1.92, 3.07). There was negligible use of total parenteral nutrition (TPN) noted in the study.
In conclusion, the study highlights medical device use in home hospice care for end-of-life symptom management. It noted the significant use of IV infusion pumps and patient controlled analgesia. Conversely, there is little use of TPN or CPAP in patients with anorexia or dyspnea. While missing data on critical symptom evaluations regrettably raises questions about the validity of the study, the NHHCS serves as an important reservoir of data on the growing population of home hospice patients.
Rush University Medical Center (RUMC) and Horizon Hospice opened the first centralized inpatient hospice unit (CIPU) in a Chicago academic medical center in 2012. This study examined if there was a difference in cost or length of stay (LOS) in a CIPU compared to hospice care in scattered beds throughout RUMC.
This retrospective, cross-sectional study compared cost and LOS for patients admitted to the CIPU (n = 141) and those admitted to hospice scattered beds (SBM) throughout RUMC (n = 56).
The CIPU patients had a median LOS of 6.0 days versus 2.0 days for SBM patients.
The CIPU patients had longer hospice LOS but lower hospital costs. Academic medical centers may benefit from aggregating hospice beds.
A combination of opioid, midazolam, and scopolamine (that we call "distress protocol" [DP]) is used to induce transient sedation when emergencies occur in palliative care. We wished to describe the prescription and administration of DP in terminally ill patients with either lung cancer or chronic obstructive pulmonary disease (COPD). In a retrospective study, 96 of 100 patients with cancer and 85 of 100 patients with COPD had a DP prescribed. Thirty patients with cancer and 29 with COPD received at least 1 DP. All patients receiving a DP for an appropriate indication were sedated within 30 minutes. There was no difference in survival from DP administration among patients who received it and those who did not.
Agitation is a distressing and dangerous behavior for all involved.
To study a protocol effectiveness and safety.
The time when the protocol was initiated and when the agitation was controlled, the number of doses needed and the complications observed were recorded.
One hundred and thirty-five inpatients of a palliative care service were included. The most frequent diagnosis was head and neck cancer, 37 (27%). The protocol was used 584 times, from 1 to 31 times on each patient, median of 3 times. Five hundred and thirty-four (91%) agitation episodes were controlled with only the first dose of the protocol, without significant complications.
From those results, it can be said that this protocol is effective and safe.
Antibiotics are frequently used in hospice care, despite limited data on safety and effectiveness in this patient population. We surveyed Oregon hospice programs on antibiotic policies and prescribing practices. Among 39 responding hospice programs, the median reported proportion of current census using antibiotics was 10% (interquartile range = 3.5%-20.0%). Approximately 31% of responding hospice programs had policies for antibiotic initiation, 17% of hospice programs had policies for antibiotic discontinuation, and 95% of hospice programs had policies for managing drug interactions. Diarrhea, nausea/vomiting, and yeast infections were the most frequently reported antibiotic-associated adverse events, occurring "sometimes" or "often" among 62%, 47%, and 62% of respondents, respectively. In conclusion, less than a third of participating hospice programs reported having a policy for antibiotic initiation and even less frequently a policy for discontinuation. More data are needed on the risks and benefits of antibiotic use in hospice care to inform these policies and optimize outcomes in this vulnerable patient population.
End-stage chronic obstructive pulmonary disease (COPD) presents health care providers with challenges of providing optimal palliative care for patients who follow a less predictable trajectory. The objectives of this study were to evaluate medications being prescribed to patients with end-stage COPD, compared to recommendations made by the Global Initiative for Chronic Obstructive Lung Disease (GOLD) guidelines, and to determine which medications were provided by the hospice organization.
We retrospectively reviewed our database for medications pertaining to COPD management as stated in the GOLD criteria or those used for symptoms associated with end of life.
A total of 745 patients met inclusion criteria, and approximately 63% were prescribed opioids. Prescribing rates for oxygen, short-acting β2-agonists, and short-acting anticholinergics were 37%, 33%, and 31%, respectively. Systemic and inhaled corticosteroids were prescribed at higher rates of 20% and 18% compared to long-acting bronchodilators.
Medications used for COPD exacerbation management were prescribed at higher rate than those used for maintenance treatment.
A retrospective study was conducted to evaluate the symptoms prevalence and interventions initiated in the last 2 weeks of life, health care service utilization, and causes of death of patients with end-stage renal disease (ESRD under a renal palliative care (RPC) program. A total of 335 RPC patients were included, of which 226 patients died during the study period. The 5 most prevalent symptoms were dyspnea (63.7%), fatigue (51.8%), edema (48.2%), pain (44.2%), and anorexia (38.1%); and the 5 most prevalent interventions initiated were oxygen (69.5%), parenteral infusion (67.3%), antibiotics (53.5%), bladder catheterization (44.7%), and analgesic (39.8%) in the last 2 weeks of life. Each patient received 3.5 ± 4.4 outpatient clinic visit, 3.4 ± 10.3 home care visits, and 3.1 ± 2.7 hospital admissions. Besides ESRD (51.8%), the most common causes of death were cardiovascular events (18.6%) and infection (17.2%).
Web-based modules provide a convenient and low-cost education platform, yet should be carefully designed to ensure that learners are actively engaged. In order to improve attitudes and knowledge in end-of-life (EOL) care, we developed a web-based educational module that employed hyperlinks to allow users access to auxiliary resources: clinical guidelines and seminal research papers.
Participants took pre-test evaluations of attitudes and knowledge regarding EOL care prior to accessing the educational module, and a post-test evaluation following the module intervention. We recorded the type of hyperlinks (guideline or paper) accessed by learners, and stratified participants into groups based on link type accessed (none, either, or both). We used demographic and educational data to develop a multivariate mixed-effects regression analysis to develop adjusted predictions of attitudes and knowledge.
114 individuals participated. The majority had some professional exposure to EOL care (prior instruction 62%; EOL referral 53%; EOL discussion 56%), though most had no family (68%) or personal experience (51%). On bivariate analysis, non-partnered (p = .04), medical student training level (p = .03), prior palliative care referral (p = .02), having a family member (p = .02) and personal experience of EOL care (p < .01) were all associated with linking to auxiliary resources via hyperlinks. When adjusting for confounders, β coefficient estimates and least squares estimation demonstrated that participants clicking on both hyperlink types were more likely to score higher on all knowledge and attitude items, and demonstrate increased score improvements.
Auxiliary resources accessible by hyperlink are an effective adjunct to web-based learning in end-of-life care.
We describe the development and implementation of a home-based palliative care consult service for Veterans with advanced illness. A retrospective chart review was performed on 73 Veterans who received a home-based palliative care consult. Nearly one-third were 80 years of age or older, and nearly one-third had a palliative diagnosis of cancer. The most common interventions of the consult team included discussion of advance directives, completion of a "do not resuscitate" form, reduction/stoppage of at least 1 medication, explanation of diagnosis, referral to home-based primary care program, referral to hospice, and assessment/support for caregiver stress. The home-based consult service was therefore able to address clinical and psychosocial issues that can demonstrate a direct benefit to Veterans, families, and referring clinicians.
Family meetings can be challenging, requiring a range of skills and participation. We sought to identify tools available to aid the conduct of family meetings in palliative, hospice, and intensive care unit settings.
We systematically reviewed PubMed for articles describing family meeting tools and abstracted information on tool type, usage, and content.
We identified 16 articles containing 23 tools in 7 categories: meeting guide (n = 8), meeting planner (n = 5), documentation template (n = 4), meeting strategies (n = 2), decision aid/screener (n = 2), family checklist (n = 1), and training module (n = 1). We found considerable variation across tools in usage and content and a lack of tools supporting family engagement.
There is need to standardize family meeting tools and develop tools to help family members effectively engage in the process.
Receptivity is a new concept within the area of scholarship on bereavement. There is a dearth of research that specifically focuses on individuals’ receptivity in relation to bereavement support. This is particularly the case within the context of rural, regional, and remote locations. There is also a noticeable absence in the literature on bereavement support to Aboriginal families. Understanding receptivity in relation to bereavement in rural areas is important, particularly as bereavement support is an important area of service to the community by palliative care services. Receptivity to bereavement services has been identified as a critical factor in participation in bereavement support programs. This review provides a starting point by outlining the present literature on receptivity and bereavement.
The objective of this exploratory study is to describe communication between physicians and the actor parent of a standardized 8-year-old patient in respiratory distress who was nearing the end of life.
Thirteen pediatric emergency medicine and pediatric critical care fellows and attendings participated in a high-fidelity simulation to assess physician communication with an actor-parent.
Fifteen percent of the participants decided not to initiate life-sustaining technology (intubation), and 23% of participants offered alternatives to life-sustaining care, such as comfort measures. Although 92% of the participants initiated an end-of-life conversation, the quality of that discussion varied widely.
Findings indicate that effective physician–parent communication may not consistently occur in cases involving the treatment of pediatric patients at the end of life in emergency and critical care units.
The findings in this study, particularly that physician–parent end-of-life communication is often unclear and that alternatives to life-sustaining technology are often not offered, suggest that physicians need more training in both communication and end-of-life care.
The aim of this work was to obtain objective data on the extent of knowledge and attitudes of the do not resuscitate (DNR) concept in an Egyptian urban setting.
This survey was conducted in Cairo, Egypt, using a structured questionnaire including 23 questions. Questions and questionnaire were developed from literature on DNR in the region and from pilot testing.
A total of 461 persons participated. In all, 48 participants (10.4%, 95% confidence interval [CI]: 7.8-13.7) agreed on the concept of DNR, 226 (49%, 95% CI: 36.1-45.2) stated that it depends on the patient condition, and 187 (40.5%, 95% CI: 44.4-53.7) rejected DNR. Combining the first 2 categories, agree and depends on patient condition, over 60% of the respondents in effect supported DNR. Family members (35.6%, 95% CI: 31.4-40.3) and attending physicians (43.3%, 95% CI: 30.1-39.0) were selected over religious leaders (21%, 95% CI: 17.5-25.2) and representatives from state institutions (4.6%, 95% CI: 2.9-7.0) as to who should have authority for making a DNR decisions.
These and additional results provide objective evidence that DNR will not be rejected outright in Egypt. More formal surveys are justified and will provide needed guidance for implementing DNR and related end-of-life medical care in Egypt.
The presence of cardiac pacemakers and defibrillators complicates making end-of-life (EOL) medical decisions. Palliative care/medicine consultation (PCMC) may benefit patients and primary providers, but data are lacking. We retrospectively reviewed 150 charts of patients who underwent device deactivation at our tertiary care center (between November 1, 2008, and September 1, 2012), assessing for PCMC and outcomes. Overall, 42% of patients received a PCMC, and 68% of those PCMCs specifically addressed device deactivation. Median survival following deactivation was 2 days, with 42% of deaths occurring within 1 day of deactivation. There was no difference in survival between the groups. The EOL care for patients with implanted cardiac devices is complex, but PCMC may assist with symptom management and clarification of goals of care for such patients.
The purpose of this review was to investigate within the literature the link between transcendent phenomena and peaceful death. The objectives were firstly to acknowledge the importance of such experiences and secondly to provide supportive spiritual care to dying patients. Information surrounding the aforementioned concepts is underreported in the literature. The following 4 key themes emerged: spiritual comfort; peaceful, calm death; spiritual transformation; and unfinished business. The review established the importance of transcendence phenomena being accepted as spiritual experiences by health care professionals. Nevertheless, health care professionals were found to struggle with providing spiritual care to patients who have experienced them. Such phenomena are not uncommon and frequently result in peaceful death. Additionally, transcendence experiences of dying patients often provide comfort to the bereaved, assisting them in the grieving process.
To evaluate the documentation of advance directive (ADs) and physician orders for life-sustaining treatment (POLST) with acceptance of palliative care (PC) services referral among patients with cancer.
We retrospectively reviewed veterans with advanced cancers at the Veterans Administration Palo Alto Health Care System. Chi-square tests estimated AD and POLST documentation and referral to PC. Logistic regression models estimated the odds of AD and POLST documentation and PC referral.
Two hundred and forty-six veterans were diagnosed with cancer. In all, 53% had a documented AD, 5% had a POLST, and 47% accepted referral to PC. The AD documentation was not associated with acceptance of PC.
We found no association of AD documentation and PC referral. Future studies should evaluate other factors that influence referral to these services.
The demand for family caregivers steadily increases as the number of people receiving hospice and palliative care rises. Family caregivers play a significant role in supporting their loved ones in end-of-life care. However, there is limited evidence about the effectiveness of the interventions for supporting family caregivers. This article synthesizes behavioral and educational interventions that support family caregivers in end-of-life care. A systematic review was conducted and searched interventional studies published between 2004 and 2014 in PubMed, CINAHL, Embase, and The Cochrane Library electronic databases. Fourteen studies were identified and analyzed: 4 educational studies, 6 cognitive behavioral therapy studies, and 4 psychoeducational studies. All educational and behavioral interventions had developed structures and treatment manuals and improved family caregivers’ outcomes. The cognitive behavioral therapy resulted in more positive outcomes than the other 2 interventions. More rigorous randomized controlled trials are needed to replicate current effective interventions with larger and diverse sample. Future studies need to develop tools for assessing family caregivers’ needs, create consistent and specific tools to effectively measure family caregivers’ outcomes, incorporate a cost-effectiveness analysis, and find the most efficient intervention format and method.
Opioid-related bowel dysfunction is a common and potentially severe adverse effect from treatment with opioid analgesics. Its development is not dose related, nor do patients develop tolerance. Opioid-induced constipation (OIC) can lead to fecal impaction, bowel obstruction, and bowel perforation as well as noncompliance with opioid analgesics and poor quality of life. Routine administration of laxatives is necessary to maintain bowel function, and, in refractory cases, other modalities must be pursued. Available options are limited but include peripherally acting μ-opioid receptor antagonists (PAMORAs), including methylnaltrexone. Naloxegol is a newly developed PAMORA that is available through the oral route. At the therapeutic dose of 25 mg daily, naloxegol is effective and safe, with a limited side effect profile and is associated with preservation of centrally mediated analgesia. In this article, we discuss the pharmacokinetics, pharmacodynamics, adverse effects, clinical trials, and cost considerations of naloxegol. Finally, we discuss its potential role as a novel key treatment for OIC in palliative medicine patients.
The purpose of this descriptive correlational study was to determine whether nurse characteristics, level of comfort with care of the dying, and spirituality predict intention to refer and timing of referral to pediatric palliative/hospice care. The Behavioral Model of Health Services Use served as the framework for this study. Data were collected from 105 pediatric nurses recruited from 7 patient units of one pediatric hospital. Regression analysis revealed several nurse factors (practice unit, years of experience, age, race/ethnicity) that predicted intent to refer and timing of referral to pediatric palliative/hospice care. The relationship between nurse characteristics and intent to refer was specific to certain medical conditions (HIV, extreme prematurity, brain injuries). Healthcare providers can use these findings to improve care for children with life-limiting illnesses.
This pilot study explored the feasibility and acceptability of a stage-tailored motivational interviewing intervention with education that focuses on changes in end-of-life (EOL) communication, completion of advance directives (ADs), and readiness for advance care planning (ACP).
One group pretest–posttest design was implemented with 30 low-income older adults.
This pilot study showed its feasibility in enhancing ACP. Action for ACP—that is, identifying a proxy for decision making and documenting EOL treatment preference in an AD—increased significantly by 23.3% (n = 7). The participants’ readiness for ACP, knowledge, self-efficacy, positive attitudes, and perceived importance of ACP increased significantly after the intervention.
Health care professionals and service providers who interact with older adults should tailor ACP dialogues in accordance with individuals’ motivation.
Due to an absence of communication training, provider responses to patient/family spiritual distress are highly variable. Assessing spiritual and forgiveness concerns are important to ensuring quality holistic care.
Cross-sectional survey data were collected from providers attending 1 of 2 continuing education courses. The survey measured the frequency and initiation of communication about spirituality and forgiveness with patients/families, the perceived difficulty in communication across topics, and preparation and resources for these discussions.
Most participants (n = 124) were nurses followed by social workers with over half of providers having 10 years or more of clinical experience. Participants reported the highest level of difficulty in spiritual communication when talking with family after the death of a patient, followed by conducting a spiritual history with a patient. Facilitating forgiveness communication between parent and adult child, followed by facilitating forgiveness between partners was most difficult for all participants. Social workers reported much lower difficulty than nurses on all items of spiritual and forgiveness communication.
The majority of participants indicated they were involved in spiritual and forgiveness communication. The most difficult communication included talking with family after death and facilitating forgiveness between patients and families. These findings support the importance of spiritual communication in clinical practice, and the need for clinician training in communicating about spirituality and forgiveness with patients and families.
Physicians often have difficulty with prognostication and identification of patients who are in need of counseling about options for care at the end of life. Consequently, the objective of this study was to describe the initial stages in development of a computerized algorithm that will identify breast and lung cancer patients most in need of counseling about care options, including advance care planning, palliative care, and hospice.
Clinical and non-clinical data were extracted from the electronic medical record of breast and lung cancer patients admitted to a large, urban hospital for the year 2010. These data were used to create an electronic (e-EOL) algorithm designed to identify advanced cancer patients who could benefit from in-depth discussion about end-of-life care options.
There were 369 eligible breast (42%) and lung (58%) cancer patients identified by ICD-9 code. The e-EOL algorithm identified 53 (14%) patients that met assigned criteria (presence of metastatic disease and albumin < 2.5 g/dl). The sensitivity, specificity, and positive predictive value of the first generation algorithm were 21%, 96%, and 91% when compared to physician expert chart review. Survival analysis showed that 6-month survival for algorithm positive cases was 46% versus 78% for algorithm negative cases, and 1-year survival was 32% versus 72%, respectively.
Initial testing of the e-EOL algorithm appears to be promising. Other markers of advanced illness will added to the algorithm to improve its test operating characteristics so it may be used to identify patients with poor prognosis in real time.
In a recent randomized trial, inpatient palliative care (PC) visits were associated with improved quality of life and symptom burden for patients with heart failure. To better understand what actions by PC providers may have led to those outcomes, we conducted chart reviews of 101 patients in the intervention group (who received PC). Palliative care actions are described for all patients and for those with higher symptoms. Orders were written for 24% of patients, most frequently for pain. Recommendations to change current care were made for 40% of patients. At least 1 element of future care planning was documented for 99% of patients. Palliative care for inpatients with HF led to additive actions beyond standard care, especially for pain, and promoted HF-specific goals of care discussions.
A lack of research on pain management among seriously ill South Asians reveals a critical gap in the knowledge base regarding culturally responsive end-of-life care. This qualitative descriptive study investigated the perspectives of health care providers that have cared for seriously ill older South Asians, on the attitudes of US South Asians toward the management of pain experienced at end of life and the factors that influenced these attitudes. Thematic analysis of interviews and focus group discussions with 57 health care providers indicated that providers perceive South Asian patients and families to be generally reluctant to use medications to treat pain experienced at end of life. Detailed description of patient-related and culturally based reasons for this reluctance is provided along with implications for hospice and palliative care.
Patients in the intensive care unit (ICU) have significantly increased mortality rates. Frequently, clinicians are called upon to help families make decisions regarding aggressiveness of care. Having a realistic expectation of outcome is critical for these discussions. This article looked at survival and outcomes following initiation of vasopressors.
All patients admitted to the ICU between January and June 2011were included. Patients were classified into those who had been started on vasopressors (VP+) and those who had not (VP–). Outcomes of these groups including survival were calculated and compared.
A total of 1023 patients were included: 169 in the VP+ group and 854 in the VP– group. The survival rate in the VP+ group was 29.6% compared to 92.0% in the VP– group. This was both clinically and statistically significant (P < .001).
Patients started on vasopressors in the ICU have very poor outcomes. Being able to quantify this accurately is important to clinicians having discussions with family members.
Prior research has shown that less than 40% of pediatric program directors believe their graduating residents competent in palliative care. While many curricula have been developed to address this need, few have demonstrated improved comfort and/or knowledge with palliative care principles. The purpose of this study was to test a pocket card educational intervention regarding resident knowledge and comfort with palliative care principles.
Pocket reference cards were created to deliver fundamentals of pediatric palliative care to resident learners; didactics and case studies emphasized principles on the cards. Self-reported comfort and objective knowledge were measured before and after the curriculum among residents.
Of 32 post-graduate year 2 (PGY2) residents, 23 (72%) completed the pre-test survey. The post-test was completed by 14 PGY2 residents (44%) and 16 of 39 PGY3/4 residents (41%). There was improvement in comfort with communication, as well as pain and symptom management among the residents. Knowledge of palliative care principles improved in part, with only a few survey questions reaching statistical significance. 100% of respondents recommended the cards be provided to their colleagues.
This longitudinal curriculum, designed specifically for pediatric residents, was built into an existing training program and proved to be popular, feasible, and effective at improving comfort with basic palliative care principles.
The aim of this study is to identify the lymphedema characteristics and the efficacy of complex decongestive physiotherapy (CDP) in 29 patients with malignant lymphedema. After CDP, total decreased volume of lymphedema was 306 mL, percentage of excess volume (PEV) changed from 43.4% to 22.7%, and lymphedema severity improved from severe to moderate status. The CDP efficacy-percentage reduction in excess volume (PREV) was 46.6%. The stage of lymphedema (P = .004), range of motion (P < .001), pain, heaviness, and tension scores (P < .001) were significantly improved after CDP. This shows that CDP is efficacious and useful in malignant lymphedema.
Racial/ethnic minorities tend to underutilize hospice services. Guided by Andersen behavioral health model, the purpose of this study was to explore the predictors of the willingness to use hospice services in racially/ethnically diverse older men and women. Data were drawn from the Survey of Older Floridians: 504 non-Hispanic whites, 360 African Americans, 328 Cuban Americans, and 241 non-Cuban Hispanics. In each group, logistic regression models of the willingness to use hospice were estimated. A greater likelihood of willingness was observed among younger non-Hispanic whites and among African Americans with fewer functional disabilities. In non-Cuban Hispanics, English proficiency increased the willingness by 3.1 times. Findings of the study identified group-specific factors contributing to the willingness to use hospice services and hold implications for tailored intervention programs.
Understanding the medical decision-making and information disclosure preferences is important for care quality.
To examine the feasibility of using the questionnaires and to identify modifications needed in the following study.
Thirty-three pairs of patients with advanced cancers and their caregivers were asked to complete the questionnaires.
More than 60% of patients and caregivers had an educational level of middle school and below. The active, passive, or shared decision-making preferences for patients were 33.3%, 39.4%, and 27.3%, respectively. Twenty of 33 patients and 24 of 33 caregivers misunderstood the questions.
Low educational levels may be the reason for poor understanding imprecision. It is necessary to use the modification version of the questionnaires in developing countries.
This retrospective pilot study aims to evaluate the clinical impact of palliative care in the treatment of terminally ill Vietnam Veterans with a history of posttraumatic stress disorder (PTSD) versus those without PTSD, as it pertains to medications for symptom control at the end of life (EOL). Active prescriptions for benzodiazepines, hypnotics, antidepressants, and antipsychotic medications at the EOL were recorded. During EOL care, 28 (72%) participants with PTSD used these medications versus 55 (40%) of the non-PTSD participants (P = .0005). There was significant correlation between a lifetime diagnosis of PTSD with antidepressant use (P = .0002) and hypnotics (P = .0085) during EOL care but not with benzodiazepines or antipsychotics. The higher utilization of certain medication classes among participants with PTSD may indicate that PTSD treatment should continue at the EOL to improve care.
There is limited information about the end-of-life care provided to patients with end-stage chronic obstructive pulmonary disease (COPD) in comparison to patients with lung cancer.
We compared the end-of-life care provided to patients with COPD versus patients with lung cancer who died in hospital over a 12-month period in our institution.
During the study period, 89 patients died due to COPD (n = 34) or lung cancer (n = 55). Compared to patients with lung cancer, patients with COPD received less palliative care services (50% vs 9%, P < .001) and underwent more diagnostic tests and received more life-prolonging measures.
Toward the end of their life, patients with COPD received fewer symptom-alleviating treatments and palliative care services.
In palliative medicine, constipation is the third most common symptom after pain and anorexia, causing some patients to discontinue opioid therapy. Women experience higher incidence of constipation than men. The prevalence of infrequent bowel movements (<3 times/wk) and adherence to an established bowel regimen among women receiving opioids were studied. Referral to the palliative care team decreased the prevalence of infrequent bowel movements from 72% to 45%, and algorithm adherence increased from 38% to 78%. Education of oncology nurses decreased the prevalence of infrequent bowel movements among patients with cancer from 71% to 60%, and algorithm adherence increased from 0% to 10%. Patients benefit from stool softeners and stimulants when receiving opioids.
Little is known about the quality of life (QoL) for informal caregivers of disabled older adults aged 65+ with diverse backgrounds. Forty-two caregivers were interviewed in English and Cantonese about their caregiving experiences, their recollections of QoL over time, and the factors influencing their appraisals. Overall, 52% of caregivers experienced a decline in QoL. Factors associated with decreased QoL were less time for self, competing financial demands, and the physical and emotional impact of the patient’s illness. Factors associated with no change in QoL were minimal caregiving responsibilities, a sense of filial duty, and QoL being consistently poor over time. Factors associated with improved QoL were perceived rewards in caregiving, receiving institutional help, and increased experience. Chinese caregivers were more likely to cite filial duty as their motivator for continued caregiving than were Caucasian caregivers. In conclusion, informal caregivers take on a huge burden in enabling older adults to age in the community. These caregivers need more support in maintaining their QoL.
Ethical decisions are part of contemporary practices in palliative care. The need of making such decisions is associated to higher burnout levels and other work related problems among healthcare professionals.
As part of the project entitled "Decisions in End-of-Life Care in Spain and Portugal" (DELiCaSP), this study aims to (i) identify the most common ethical decisions made by Portuguese palliative care teams and (ii) understand how the making of such decisions relates to burnout.
A mixed methods study was conducted with 9 palliative care teams, using (i) questionnaires of socio-demographic and professional variables, work-related experiences, (ii) the Maslach Burnout Inventory, (iii) interviews and (iv) observations. These teams were geographically dispersed across the country, covering the North, Centrum and South regions, and heterogeneous: Five palliative care units for inpatients; three home care teams; and one hospital support team. A total of 20 interviews and 240 hours of observations were completed until reaching saturation.
The most common ethical decisions were related to communication issues (information disclosure of the diagnosis and prognosis), forgoing treatment and sedation. Although perceived as stressful, emotionally demanding and challenging, ethical decisions were not significantly associated with burnout.
Making ethical decisions is not associated with higher burnout levels among professionals working in Portuguese palliative care teams. This can be explained by the interprofessional decision-making process followed by these teams, which promotes a sense of shared-decision and team-based empowerment; and by the advanced level of interdisciplinary education in palliative care that these professionals have.
Informal caregivers are crucial members of the teams that care for palliative patients with cancer, including those with oncohematological malignancies. Publications concerning specific aspects of this latter group of carers are limited. This literature review indicates that palliative oncohematologic patients’ caregivers do not differ from those of patients with solid tumors in ethical and related problems. However, there are specific problems for the former group with regard to negotiating the curative system, which are experienced as distressing, often without support from the health system and without offers of the possibility of being referred to palliative teams that they would have valued as very positive. Although this tendency seems to be changing, there is still considerable work to be done to improve the role of these carers.
Few Asian studies have elucidated factors influencing patients and their family members on their preferred place of care at the end of life. This pilot study describes the perceptions of Singaporean patients with cancer and their family members that affect their choices in place of care.
Patients with cancer and their family members were surveyed at a tertiary hospital in Singapore. This convenience sample was recruited from April to July 2012.
Fourteen pairs of patients and their family members (N = 28) were recruited. A majority of patients (64.3%) and family members (71.4%) were found to have a preferred place of care at the end of life. Of the respondents who expressed a preference (n = 19), 88.9% of patients and 90.0% of family members named "home" as their preferred place of care. Quality of care at home was rated "good" or "excellent" by all patients and 85.7% of family members.
Home is the most favored choice among patients and family members who have a preferred place of care.
We investigated the trends in advance care planning (ACP) between 2002 and 2010 and whether socioeconomic status explained such trends. We conducted a pooled regression analysis of Health and Retirement Study data from 6052 proxies of deceased individuals. We studied 3 ACP behaviors, discussing end-of-life (EOL) care preferences, providing written EOL care instructions, and appointing a durable power of attorney for health care (DPAHC). ACP increased by 12% to 23% every 2 years from 2002 to 2010. Higher household income increased the odds of having a DPAHC. Education was not associated with ACP. Socioeconomic status alone appears to play a very limited role in predicting ACP. Engagement in ACP likely depends on a constellation of many social and contextual factors.
The current state of the science in the fields of patient safety and palliative and end-of-life care have many issues in common. This article synthesizes recent systematic reviews and additional research on improving patient safety and end-of-life care and compares each field’s perspective on common issues, both in traditional patient safety frameworks and in other areas, and how current approaches in each field can inform the other. The article then applies these overlapping concepts to a key example area: improving documentation of patient preferences for life-sustaining treatment. The synthesis demonstrates how end-of-life issues should be incorporated into patient safety initiatives. In addition, evaluating overlap and comparable issues between patient safety and end-of-life care and comparing different perspectives and improvement strategies can benefit both fields.
Frequent emergency department visits (EDVs) by patients with terminal cancer indicates aggressive care. The pattern and causes of EDVs in 154 patients with terminal cancer were investigated. The EDVs that started during working hours and ended by home discharge were considered avoidable. During the last 3 months of life, 77% of patients had at least 1 EDV. In total, 309 EDVs were analyzed. The EDVs occurred out of hour in 67%, extended for an average of 3.6 hours, and ended by hospitalization in 52%. The most common chief complaints were pain (46%), dyspnea (13%), and vomiting (12%). The EDVs were considered avoidable in 19% of the visits. The majority of patients with terminal cancer visit the ED before death, mainly because of uncontrolled symptoms. A significant proportion of EDVs at the end of life is potentially avoidable.
This study examined the motivations for volunteering of hospice volunteers in France. In addition, their levels of death anxiety and empathy were measured and compared with those of French non-hospice volunteers and non-volunteers. Three questionnaires—the Inventory of Motivations for Hospice Palliative Care Volunteerism (IMHPCV),1 the Templer/McMordie Death Anxiety Scale2, and the Interpersonal Reactivity Index3—were sent via an Internet link to 2 hospice volunteer associations and to non-hospice volunteers and non-volunteers (only the hospice volunteers received the IMHPCV). Altruistic motives had the most influence on the respondents’ decision to become a hospice volunteer. French hospice volunteers scored significantly lower on 3 categories of motives on the IMHPCV compared to a sample of Canadian hospice palliative care volunteers (study 2),1 suggesting that cultural differences may be involved. No significant differences were found in levels of death anxiety or empathy between the 3 groups of respondents of the study.
Palliative care (PC) and end-of-life (EOL) care are gaining importance in the management of critically ill patients in the ICU. Residents form a significant work force in the ICU and most often are the only group that provides round the clock coverage.
We conducted a cross sectional study where residents were surveyed to assess their knowledge, skills and perceived barriers towards palliative care in the ICU.
The most common barrier identified by our residents was discrepancies in goals of care between the medical team and patients/families (18.7%). A palliative care consult was most commonly obtained when the patient was terminally ill (22.9%).
Teaching should focus on overcoming the identified barriers especially communication with patients and their families. More studies are needed to identify the best method to teach Palliative care in the ICU.
Many critically ill patients who transfer from rural hospitals to tertiary care centers (TCCs) have poor prognoses, and family members are unable to discuss patient prognosis and goals of care with TCC providers until after transfer.
Our TCC conducted teleconferences prior to transfer to facilitate early family discussions.
We conducted a retrospective review of these telemedicine family conferences among critically ill patients requested for transfer which occurred from December 2008 to December 2009 at our TCC. Outcomes for each patient and detailed descriptions of the conference content were obtained. We also assessed limitations and attitudes and satisfaction with this intervention among clinicians.
During the 12-month period, 12 telemedicine consultations were performed. Of these patients, 10 (83%) died in the 30 days following the request for transfer. After the telemedicine consultation, 8 (67%) patients were transferred to our TCC from their respective hospitals, while 4 (33%) patients continued care at their regional hospital and did not transfer. Of the patients who transferred to TCC, 7 (88% of those transferred) returned to their community after a stay at the TCC.
This study demonstrates that palliative care consultations can be provided via telemedicine for critically ill patients and that adequate preparation and technical expertise are essential. Although this study is limited by the nature of the retrospective review, it is evident that more research is needed to further assess its applicability, utility, and acceptability.
Improving symptom management for palliative care patients has obvious benefits for patients and advantages for the clinicians, as workload demands and work-related stress can be reduced when the emergent symptoms of patients are managed in a timely manner. The use of emergency medication kits (EMKs) can provide such timely symptom relief. The purpose of this study was to conduct a survey of a local service to examine views on medication management before and after the implementation of an EMK and to conduct a nationwide prevalence survey examining the use of EMKs in Australia. Most respondents from community palliative care services indicated that EMKs were not being supplied to palliative care patients but believed such an intervention could improve patient care.
The purpose of our study was to identify time to death and/or reenrolled patients alive at the time of hospice discharge.
Medical records of all adults alive at hospice discharge during a 5-year period were retrospectively reviewed.
In all, 83 patients were alive at discharge, with 3 lost to follow-up. Average time from discharge to death was 199.9 days for all patients and 50 days for the 17 patients who reenrolled. Average time from discharge to reenrollment was 245 days.
Our research supports past findings that over a third of patients disenrolled from hospice die within 6 months, indicating ongoing hospice eligibility up to the time of death. Interestingly, if enrollment was revoked by patient or family, as often was done to allow the patient to pursue more aggressive treatments, the mortality risk was higher in the 6 months after discharge. This should prompt careful reevaluation of disenrolled hospice patients in the months after disenrollment, and hospice reenrollment should be continually available and offered during this time.
End-of-life care is affected by the attitude and cultural influence of doctors.
To investigate the attitudes and practices of doctors on end-of-life care by questionnaire survey in 2004 and 2008.
In 2004, 31.7% of the respondents agreed that they "do not attempt resuscitation" (DNAR) form was useful and it rose to 54.4% in 2008. A higher proportion of respondents in 2008 claimed that they signed the DNAR form for documentation and accepted withholding noninvasive life-sustaining treatment compared to 2004. In 2004, 50% of the respondents regarded their training and education on handling DNAR issue as inadequate.
Documentation by DNAR form is gaining wider acceptance. Many doctors are expected to have more training and coaching on communication for handling such sensitive issues.
To examine the feasibility and usefulness of a novel region-based pathway: the Regional Referral Clinical Pathway for Home-Based Palliative Care.
This was a feasibility study to evaluate the frequency of variances and the perceived usefulness of pathway using in-depth interviews. All patients with cancer referred to the palliative care team between 2011 and 2013 and received home care services were enrolled.
A total of 44 patients were analyzed, and pathway was completed in all the patients. The target outcome was achieved in 61.4% while some variances occurred in 54.5%. Nine categories were identified as the usefulness of the pathway, such as reviewing and sharing information and promoting communication, education, motivation, and relationships.
This novel pathway is feasible and seems to be useful.
To describe the suggested clinical practice of palliative sedation as it is presented in the literature and discuss available guidelines for its use.
CINAHL, PubMed, and Web of Science were searched for publications since 1997 for recommended guidelines and position statements on palliative sedation as well as data on its provision. Keywords included palliative sedation, terminal sedation, guidelines, United States, and end of life. Inclusion criteria were palliative sedation policies, frameworks, guidelines, or discussion of its practice, general or oncology patient population, performance of the intervention in an inpatient unit, for humans, and in English. Exclusion criteria were palliative sedation in children, acute illness, procedural, or burns, and predominantly ethical discussions.
Guidelines were published by American College of Physicians-American Society of Internal Medicine (2000), Hospice and Palliative Nurses Association (2003), American Academy of Hospice and Palliative Medicine (2006), American Medical Association (2008), Royal Dutch Medical Association (2009), European Association for Palliative Care (2009), National Hospice and Palliative Care Organization (2010), and National Comprehensive Cancer Network (2012). Variances throughout guidelines include definitions of the practice, indications for its use, continuation of life-prolonging therapies, medications used, and timing/prognosis.
The development and implementation of institutional-based guidelines with clear stance on the discussed variances is necessary for consistency in practice. Data on provision of palliative sedation after implementation of guidelines needs to be collected and disseminated for a better understanding of the current practice in the United States.
Our objective was to explore the effectiveness of a palliative care team (PCT) by investigating potential differences in opioid prescription between patients who had had PCT involvement before admission to an inpatient hospice and those who had not. A total of 221 patients met the criteria; they were divided into an intervention group (n = 140) and a control group (n = 81). The daily dose of opioid before admission to the hospice was significantly higher in the intervention group (P < .001). The difference between the maximum opioid dose and the initial dose, the rate of increase in opioids until death, and the length of stay in the hospice were not significantly different between the groups. A PCT contributes to more appropriate use of opioids before admission to a hospice.
The purpose of this qualitative analysis was to examine the experiences of family caregivers supporting a dying person in the home setting. In particular, it explores caregivers’ perceptions of receiving palliative care at home when supplied with an emergency medication kit (EMK).
Most family caregivers described preexisting medication management strategies that were unable to provide timely intervention in symptoms. The EMK was largely viewed as an effective strategy in providing timely symptom control and preventing readmission to inpatient care. Caregivers reported varying levels of confidence in the administration of medication.
The provision of an EMK is an effective strategy for improving symptom control and preventing inpatient admissions of home-dwelling palliative care patients.
This report addresses the discharge disposition following inpatient psychiatric treatment for advanced dementia. The total population included 685 305 Medicare fee-for-service decedents with advanced cognitive and functional impairment, with a mean age of 85.9 years who had resided in a nursing home. In the last 90 days of life, 1027 (0.15%) persons received inpatient psychiatry treatment just prior to the place of care where the individual died. Discharge dispositions included 132 (12.9%) persons to a medical hospital, 728 (70.9%) to nursing home without hospice services, 73 (7.1%) to hospice services in a nursing home, 32 (3.1%) to home without hospice services, and 16 (1.6%) to hospice services at home. Overall, the rate of referral to hospice services for advanced dementia was relatively low.
The increasing coexistence of cancer and diabetes within the elderly population requires specific palliative care skills on diabetes treatment. We report our experience of diabetes management in a palliative care setting. In our retrospective 3-year activity sample (n = 563), 27.2% of patients have a diagnosis of diabetes mellitus: 80% have cancer whereas 20% have a main diagnosis of other severe chronic diseases. As to the presence/absence of diabetes, no differences emerge in the examined clinical indicators and global survival, with the exception of body mass index and days of hospitalization. At lifetime analysis, Barthel index and palliative prognostic index are the only parameters significantly related to death. Even if diabetes seems not to modify the prognosis, it significantly influences the health care burden and the team engagement.
To identify both meanings and perceptions of delivery of end-of-life (EoL) care for the person experiencing dementia.
As part of a larger cross-sectional mixed methods study examining quality of life in dementia, perspectives of EoL care were sought from 136 seniors using open-ended questions administered at interview.
Seniors living in various settings identified obligatory requisites of care as time when the finality of death needed to be accepted, comfort was prioritized, family presence was valued, appearance remained important, and solitude or time "to be with God" was stressed. Skilled nursing care, honesty, and engaged family were also necessary.
Understanding EoL preferences of those with dementia is critical for advocacy and service delivery.
Multiple factors influence end-of-life (EOL) care discussions that occur in health care systems, within organizations, among individuals working within these systems and in patients and family/friend support networks. This study examined barriers to EOL care discussions as experienced by health care providers working in a public safety-net health care system where the majority of their patients were low-income and immigrant Latinos seeking medical treatment. Qualitative data were collected in South Central Los Angeles through semistructured interviews with 46 health care providers from different disciplines in medicine, nursing, social work, and chaplaincy. The themes indicated communication barriers in the public sector health care setting and sociocultural patient- and family-level factors. All providers made valuable contributions to clarify the complexity of the problems. Universal strategies are needed to improve communication.
Pain management (PM) has not been routinely incorporated into HIV/AIDS care and treatment in resource-constrained settings.
We describe training for multidisciplinary teams tasked with integrating care management into HIV clinics to address pain for persons living with HIV in Nigeria.
Education on PM was provided to mixed-disciplinary teams including didactic and iterative sessions following home and hospital visits. Participants identified challenges and performed group problem solving.
HIV trainers identified barriers to introducing PM reflecting views of the patient, providers, culture, and the health environment. Implementation strategies included (1) building upon existing relationships; (2) preliminary advocacy; (3) attention to staff needs; and (4) structured data review.
Implementing PM in Nigerian HIV clinics requires recognition of cultural beliefs.
To describe the prevalence of chronic pain and the risk of opioid misuse in a palliative care clinic.
We reviewed patient records for 6 months for source of pain, treatment status, opioid misuse risk (Cut down, Annoyed, Guilty, and Eye-opener [CAGE] and Screener and Opioid Assessment for Patients with Pain version 1.0—Short Form [SOAPP-SF] scores), and urine drug screens.
Of 323 patients, 91% had cancer, 56% undergoing cancer treatment, while 28% had no evidence of disease. Eighty-six (27%) patients had noncancer pain. In all, 46% of new patients had positive scores on the SOAPP-SF and 15% had a positive CAGE. Of the less than 5% of visits that included a urine drug screen, 56% had aberrant results.
Chronic pain and indicators of opioid misuse risk were prevalent. Outpatient palliative care practices should develop policies to address these issues.
Significant research exists demonstrating the challenges faced by informal family caregivers as they care for their loved ones. How caregivers react to this experience, especially in the case of a terminal illness, is less understood. This study explores the reactions of hospice caregivers to their caregiving experience prior to enrollment in hospice and identifies potential stressors associated with those reactions. Results found anxiety to be a significant predictor in the reaction of caregivers to their caregiving experience upon hospice enrollment.
Death in tertiary care neonatal intensive care units is a common occurrence. Despite recent advances in pediatric palliative education, evidence indicates that physicians are poorly prepared to care for dying infants and their families. Numerous organizations recommend increased training in palliative and end-of-life care for pediatric physicians. The purpose of this study is to develop a structured end-of-life curriculum for neonatal–perinatal postdoctoral fellows based on previously established principles and curricular guidelines on end-of-life care in the pediatric setting. Results demonstrate statistically significant curriculum effectiveness in increasing fellow knowledge regarding patient qualification for comfort care and withdrawal of support (P = .03). Although not statistically significant, results suggest the curriculum may have improved fellows’ knowledge of appropriate end-of-life medical management, comfort with addressing the family, and patient pain assessment and control.
The current literature suggests deficiencies in the quality of acute pain management among general medical inpatients. The aim of this qualitative study is to identify potential barriers to high-quality acute pain management among general medical inpatients at an urban academic medical center during a 2-year period. Data are collected using retrospective chart reviews, survey questionnaires, and semistructured, open-ended interviews of 40 general medical inpatients who have experienced pain during their hospitalization. Our results confirm high prevalence and disabling impacts of pain and significant patient- and provider-related barriers to high-quality acute pain management. We also identify unique system-related barriers such as time delay and pain management culture. Efforts to improve the pain management experience of general medical inpatients will need to address all these barriers.
A descriptive study to determine the current status of end-of-life (EOL) issues in UK medical schools.
A brief questionnaire was mailed to the 31 medical schools in the United Kingdom in the spring of 2013. Data analysis consisted of frequency distributions.
All schools offered some exposure to the topic of dying, death and bereavement, and palliative care, although the orientation had increased somewhat from an earlier study in 2000. The palliative medicine specialist and the nurse specialist in palliative care are the most consistent members of the team. Most schools have hospice participation, with time spent with a hospice patient increasing over the period.
Data suggest that UK medical schools have addressed EOL issues. These findings should have significance for medical schools considering changes in their EOL offerings.
To examine the effects of early palliative care (PC; EPC; ≤3 days after admission) consultation versus late PC (>3 days) on number of days from day of consult to discharge (DCDAYS), a retrospective review of PC data (2009-2012) included 531 patients with age ≥65 and Palliative Performance Scale ≤50. Early PC was independently associated with lower DCDAYS (P = .019). Persons admitted to hospice (P = .010) as well as those discharged to home (P = .003) and subacute rehabilitation (SAR; P = .015) were more likely to have an EPC compared to those who died. Admitting to hospice was associated with lower DCDAYS than discharging to long-term acute care (P < .001) or SAR (P < .001). Early PC resulted in lower DCDAYS, fewer inpatient deaths, and higher hospice admissions. Hospice resulted in fewer DCDAYS.
Organizational characteristics may impede the uniform adoption of advance care planning (ACP) best practices. We conducted telephone interviews with site directors of a Midwestern state’s Medicaid waiver program administered by the Area Agencies on Aging and surveyed the 433 care managers (registered nurses and social workers) employed within these 9 agencies. Care managers at 2 agencies reported more frequent ACP discussions and higher levels of confidence. Both sites had ACP training programs, follow-up protocols, and informational packets available for consumers that were not consistently available at the other agencies. The findings point to the need for consistent educational programs and policies on ACP and more in depth examination of the values, beliefs, and resources that account for organizational differences in ACP.
This focus group study describes end-of-life caregiving and decision making among blacks from the perspective of the informal caregivers and decision makers. The Behavioral Model of Health Services Use framed the study. Five focus groups with a total of 53 informal caregivers/decision makers were conducted. A qualitative phenomenological approach was used for the data analysis. Findings are presented under the themes of end of life caregiving and decision making roles, dynamics and process, and beliefs and values. The common thread of care giving and decision-making within relationship and six subthemes were identified. Findings also suggest the need for support and inclusion of designated informal caregivers and decision-makers in the advance care planning process early in the disease trajectory.
The literature about Chinese attitudes toward death and dying contains frequent references to strong taboos against open discussion about death; consequently, there is an assumption that dying at home is not the preferred option. This focused ethnographic study examined the palliative home care experiences of 4 Chinese immigrants with terminal cancer, their family caregivers, and home care nurses and key informant interviews with 11 health care providers. Three main themes emerged: (1) the many facets of taboo; (2) discursive tensions between patient-centered care and cultural competence; and (3) rethinking language barriers. Thus, training on cultural competence needs to move away from models that portray cultural beliefs as shared, fixed patterns, and take into account the complicated reality of everyday care provision at end of life in the home.
There are several kinesthetic parameters that can be used to measure fatigue including strength, endurance, sense of effort, perception of force exerted, and tapping speed. We developed a protocol and tested the feasibility of correlating subjective fatigue with kinesthetic parameters in a small group of patients with cancer having fatigue and in controls. Accrual was limiting. We discuss the limitations and potential modifications in the procedure, which may allow improved accrual and the rationale behind performing such a study.
The medical records of 246 in-hospital cancer deaths were reviewed to explore the relation between palliative care (PC) timing and the frequency and timing of do-not-resuscitate (DNR) designation. The rate of DNR designation was 100% in patients referred to PC and 82% in those never referred (P < .001). Patients were grouped into 4 groups: early PC (>90 days from PC referral to death), intermediate PC (>30-90 days), late PC (≤30 days), and no PC. The median DNR to death time was 96, 41, 11, and 3 days, respectively (P < .001). The proportion of intensive care unit (ICU) deaths was 0%, 1%, 3%, and 27%, respectively (P < .001). In conclusion, in a tertiary care hospital, earlier PC was associated with earlier DNR designation and less frequent ICU deaths among in-hospital cancer deaths.
The distinction between continuous sedation until death (CSD) and physician-assisted death (PAD) has become a topic of medical ethical debate. We conducted 6 focus groups to examine how nursing home clinicians perceive this distinction. For some, the difference is clear whereas others consider CSD a form of euthanasia. Another group situates CSD between pain relief and ending life. Arguments for these perspectives refer to the following themes: intention, dosage of sedative drugs, unconsciousness, and the pace of the dying process. Generally, CSD is considered emotionally easier to deal with since it entails a gradual dying process. Nursing home clinicians have diverging perceptions of the relation between CSD and PAD; some consider CSD to be more than a purely palliative measure, that is, also as a means to hasten death.
African Americans typically underuse hospice care; this study explores their end of life attitudes.
An iterative focus group strategy generated qualitative data using 4 baseline groups and 1 confirmatory focus group recruited from predominantly African American churches. Each group consisted of 8 to 14 adults. Investigators analyzed data for dominant themes, representatives from baseline groups returned to discuss the results.
A total of 43 African Americans (male: 8 [18.6]; female: 35 [81.4]) participated in initial discussions, with 10 returning for follow-up. The prevailing theme was transitions; with life to death dominating discourse; other themes included curative to palliative care and acceptance of death as inevitable.
Among African Americans, outreach efforts may be strengthened by reframing the dying process as the product of many transitions and reaching out to faith-based communities.
The Hispanic older adult population is increasing rapidly and past research suggests that this demographic group underutilizes hospice services, highlighting the need to improve our understanding of their needs in end of life. This study relied upon information from the family evaluation of hospice care survey provided by 2980 caregivers, 152 of whom cared for a Hispanic patient and 2828 who cared for a non-Hispanic patient. Caregivers of Hispanic patients were more likely to report that hospice was inconsistent with the patient’s wishes, and that they received more attention than desired for emotional issues. Caregivers of Hispanic patients were also more likely to express that emotional/spiritual forms of support were insufficient. Similar levels of satisfaction were reported for caregivers of Hispanics and non-Hispanics regarding dignity/respect, information received, care coordination, and overall satisfaction.
Healthcare providers need to better understand the end-of-life situations of in-home amyotrophic lateral sclerosis (ALS) patients to support their desires about where to die and to allow peaceful death.
To clarify the situations of individuals with ALS in the last stages of illness according to the place of death as reported by home care nurses.
Minimum structured interviews were conducted with 14 home care nurses, and data regarding 14 ALS patients who died were collected.
Six patients died at home, and eight died at the hospital. Many sudden deaths were observed among the patients who died at home, whereas pneumonia was often the cause of death in the hospital.
Providing family education and ensuring the availability of local family physicians are vital to meeting a patient's desire to die at home. Home care nursing should be introduced in the early stage after diagnosis to provide support to patients for timely decision-making.
This national mixed method study with directors of 207 hospices identified major barriers to cultural competence, including (1) lack of funding for additional staff for community outreach or development of culturally competent programs, (2) lack of applications from diverse professionals, and (3) lack of knowledge about diverse cultures and what cultural groups in the community are not being served. Qualitative results indicated that elements of an organizational culture, which create barriers to access included (1) failure to prioritize cultural competence, (2) failure to budget for culturally competent services, and (3) a staff that does not value awareness of cultural differences, is uncomfortable with diversity, and stereotypes diverse individuals. In phase 2, an interactive session with a 100-symposium audience provided strategies to address the barriers.
The implementation of the Affordable Care Act that provides for the expansion of affordable insurance to uninsured individuals and small businesses, coupled with the provision of mandated hospice coverage, is expected to increase the enrollment of the terminally ill younger population in hospice care. We surveyed health insurance companies that offer managed care plans in the 2014 California health insurance exchange and large hospice agencies that provided hospice care to privately insured patients in 2011. Compared with Medicare and Medicaid hospice benefits, hospice benefits for privately insured patients, particularly those enrolled in managed care plans, varied widely. Mandating hospice care alone may not be sufficient to ensure that individuals enrolled in different managed care plans receive the same level of coverage.
Internal data from the sole pediatric hospice in British Columbia were utilized to investigate mortality trends among children dying from life-threatening conditions. Characteristics of the sample (hospice) were compared to that of the population (province) for individuals aged 0 to 18 years from 2002 to 2011. The provincial death rate was 2.30 per 10 000. The sample did not significantly vary with respect to sex and geographic distribution when compared to the population. Infants contributed to a significantly larger proportion of pediatric deaths in the population. Children referred to the hospice were more likely to be diagnosed with cancer and diseases of the nervous system. Only 15% of all pediatric deaths due to disease in the province were cared for by the hospice, calling for the strengthening of interdisciplinary palliative care programs.
Despite the availability of endorsed quality measures and widespread usage of hospice, hospice quality data are rarely available to consumers. Moreover, little is known about how consumers prioritize extant measures. This study drew on focus group and survey data collected in 5 metropolitan areas. The study found that consumers reported the hospice quality indicators we tested were easy to understand. Participants placed top priority on measures related to pain and symptom management. Relative to consumers with hospice experience, consumers without previous experience tended to place less value on spiritual support for patients and caregivers, emotional support for caregivers, and after-hours availability. The National Quality Forum-approved measures resonate well with consumers. Consumers also appear to be ready for access to data on the quality of hospice providers.
Research suggests that addressing dying patients’ existential concerns can improve their quality of life. We aimed to illuminate dying patients’ existential concerns about the impending death through a descriptive analysis of semistructured interviews with 17 patients in Danish hospices. The main findings demonstrated how the patients faced the imminent death without being anxious of death but sorrowful about leaving life. Some patients expressed that they avoided thinking about death. They wished to focus on positive aspects in their daily life. We argue that the patients’ existential concerns could not be fully captured by Yalom’s existential psychology or by Kübler-Ross's theory about death stages. Patients’ complex concerns could be more fully explained taking an outset in Heidegger's phenomenological thinking.
In hospital settings, inadequate recognition of futility of aggressive medical management in patients with terminal disease and lack of the timely transition to palliative care may lead to both excessive and potentially harmful treatment and unnecessary burden on hospital resources. In order to better understand the outcomes of futile medical management and recognize the need for more appropriate end-of-life care, we evaluated the survival of particularly vulnerable cohort of patients in a community hospital who had survived at least 1 cardiorespiratory arrest (CRA) but whose medical problems led to subsequent arrests.
In this retrospective cohort study, we have reviewed the annual cardiopulmonary resuscitation (CPR) data in a community hospital in urban settings.
Analyzing the population of all patients who had CRA, 22.4% had more than 1 CRA episode and had multiple CPRs (42% of all inpatient CPR were performed on this group of patients). Overall survival at the discharge of patients who had single CRA is significantly better than survival at the discharge of patients who had more than 1 CRA episode (31% vs 4.5%). Only 18.5% of the patients who initially survived CPR after CRA were transitioned to "do not resuscitate" status subsequently, while vast majority had continued aggressive resuscitative efforts.
Adjusting medical care based on futility assessment in patients with chronic illness who survive CRA is often neglected, but crucially relevant step in the optimization of health care system management.
In response to a 2011 finding that approximately 27% of Medicare-certified hospices do not provide a single day of general inpatient care (GIP), the authors explored the extent to which hospices have contracts with hospitals for GIP. Using the 2007 National Home and Hospice Care Survey, we estimated that 1119 (32%) agencies had no contract with any hospitals in 2007 and half of those with no contract did not have a contract with a skilled nursing facility (SNF) either. As a result, these hospices were unable to provide GIP referrals for those in need of inpatient care for acute pain and symptom management. More importantly, not having a contract with a hospital was just one of the factors influencing GIP provision. In the multivariate logistic model, after controlling for contract status with a hospital and other hospice characteristics, agencies in the second quartile of hospice patient census (12-29 vs 73 or more, adjusted odds ratio = 14.10; 95% confidence interval 4.26-46.62) were independently related to providing only routine home care. These hospices are more likely to rely solely on scatter beds for GIP provision. Given that a significant portion of hospices do not have a contract with a hospital, policy makers need to understand barriers to contracts with a hospital/SNF for GIP and consider a hospice’s contract status as one of the standards for hospice certification. In addition, further research is necessary to understand why hospices that do have a contract with a hospital do not make GIP referral.
A qualitative study was conducted with semistructured interviews to explore the experiences of well-being in 15 adult palliative care inpatients of University Malaya Medical Center, Kuala Lumpur, Malaysia. The results were thematically analyzed. Six basic themes were generated (1) positive attitude, (2) positive cognitions, (3) positive emotions, (4) positive engagement, (5) positive relationships, and (6) positive circumstances. The Seeds Model was conceptualized from the analysis. This model may inform the development of interventions in the enhancement of well-being of palliative care patients.
The purpose of this study was to examine the attitudes of hospice palliative care (HPC) volunteers who provide in-home support (n = 47) and members of the community (n = 58) toward the issue of physician-assisted suicide (PAS). On the first part of the survey, participants responded to 15 items designed to assess their attitudes toward PAS. An examination of individual items revealed differences in opinions among members of both the groups. Responses to additional questions revealed that the majority of volunteers and community members (1) support legalizing PAS; (2) would choose HPC over PAS for themselves if they were terminally ill; and (3) think Canadians should place more priority on developing HPC rather than on legalizing PAS. The implications of these findings are discussed.
This research project evaluated cost outcomes for patients in the @HOMe Support program, a novel interdisciplinary home-based program for patients and caregivers facing advanced illness drawing on the Chronic Care Model.
Cost analysis involved paired sample t-tests to examine pre–post differences in health care expenditures obtained from Health Maintenance Organization (HMO) claims data for program participants.
Average 6-month costs per month significantly declined for patients older than 65 years of age from 1 HMO (US$9300-US$5900, P = .001). Evaluation of the second HMO showed that patients less than 65 years of age with lower preentry costs (<70 000) had a nonsignificant decline in total costs (US$18 787-US$13 781, P = .08).
Study findings suggest @HOMe Support is associated with reductions in the use and cost for most health services over time.
"Cure" is an important word in oncology but its use in the published literature has not been examined. I investigated all oncology articles using cure in the title field and published in 2012. The definition of cure was examined, specifically whether or not authors use the word to connote some surviving subset of patients who go on to experience outcomes similar to age-matched, normal controls—a definition favored by researchers and employed in survival function analyses.
All articles published between January 1, 2012, and December 31, 2012, with the word cure in the title field were retrieved from Thompson Reuters’ Web of Science. After exclusions, articles were read in full to examine what definitions of cure was used. Additionally, for each situation (type of cancer, stage/grade) where the word cure was used, a literature search was performed to ascertain whether there existed documented cases of cure.
Twenty-nine oncology articles used the word cure in their title in 2012. Nearly half, 14 (48%) of 29, used the term in situations (cancer type, stage/grade) currently considered incurable. Approximately one-third (34.5%) of the articles used the word consistent with the definition that, after a set period of time, some surviving subset of patients experience survival similar to normal controls.
There is heterogeneity in the use of the word cure in the literature.
This multicenter study evaluated the quality of life (QOL) of patients with advanced cancer and assessed the improvement in patients’ QOL by hospice service program, using McGill Quality of Life Questionnaire-Hong Kong version (MQOL-HK) questionnaire in China’s 32 hospice centers from March to June, 2012. Among 640 recruited cases, data of 630 patients were analyzed. Differences in patients’ pre- and posthospice QOL were evaluated. Compared to prehospice results, patients’ QOL scores improved significantly in physical, psychological, existential, and support domains after 3 weeks of hospice services. Some items were not thus classified primarily due to cross-cultural adaptation. The MQOL-HK questionnaire could effectively measure QOL in Chinese hospice patients and their QOL could be improved by hospice services. Psychological, existential, and support services should be emphasized during patients’ initial 3 weeks of hospice admission.
Physicians' religiosity affects their approach to end-of-life care (EOLC) beliefs. Studies exist about end-of-life care beliefs among physicians of various religions. However, data on Muslim physicians are lacking. This study explores the beliefs centering on aspects of end-of-life care among Muslim physicians in the US and other countries.
A 25 item, online survey was created and distributed via Survey Monkey®. The survey was targeted toward Muslim physicians in the US and other countries.
A total 461 Muslim physicians responded to our survey. The primary end point was if the Muslim physicians thought that making a patient DO NOT RESUSCITATE (DNR) is allowed in Islam?. Nearly 66.8 % of the respondents replied yes as compared to 7.38 % of the respondents who said no. Country of origin, country of practice, and if physicians had talked about comfort care in the past had the most impact on the yes vs. no response (p=0.0399, p=0.0092 and 0.0023 respectively).
Muslim physicians' beliefs on EOLC issues are affected more by the area of practice, country of origin and previous experience in talking about comfort care than the religious beliefs.
In spite of the existence of clinical guidelines and a legal framework in France, the withdrawal of artificial nutrition (AN) in palliative care remains a difficult situation for caregivers who are confronted with this reality.
To describe the perception of caregivers on the withdrawal of AN and to compare this perception between caregivers who have already been confronted with this situation and those who have not.
Cross-sectional survey questionnaire of nurses and nurses’ aides (n = 274) working in medicine, surgery, and palliative care departments of a regional hospital.
Of the caregivers, 59.5% declared having been confronted with the withdrawal of AN in their professional practice. This was associated with a better perception by these caregivers even if their knowledge on the criteria to be considered in the decision was not significantly modified.
The coherence of the withdrawal of AN with the personal beliefs of the caregivers, already high in the absence of being confronted with this practice, is better among caregivers who have been confronted with this situation. The lack of information perceived by caregivers should prompt us to develop additional training on the withdrawal of AN, its objectives, and its clinical consequences.
To explore and document the experiences and expectancies of bereaved family members concerning the end-of-life (EOL) care of their deceased relative in a general hospital setting.
Cross-sectional study using a questionnaire that included open-ended questions. Free-text answers were evaluated with qualitative content analysis. A total of 270 family members provided information about improvements in inpatient care.
Families described structural deficiencies. Furthermore, they requested a more holistic patient health care beyond medical treatment and expressed the wish for more professional support for families.
The view of bereaved families confirmed the need for improvement in general hospital EOL care. The results underline the importance of a more holistic EOL care. The application of communication skills training, structured family meetings, and integrated pathways is recommended.
To study the burden of patients’ symptoms other than pain and their treatment by Portuguese palliative care teams.
Of the 21 Portuguese palliative care teams identified, 10 accepted to participate. Data from all patients observed on the 18th week of 2011 were collected.
One hundred and sixty-four patients were included in this study. One hundred and fifty-one patients (92%) had cancer. The patients’ median age was 71 years (16-95) and 84 (51%) were females. The main symptoms were fatigue (116 [85%]) and depression/sadness (107 [65%]). Many different drugs were used for symptom control and other aims. Symptoms and drugs used here are similar to those practiced in other countries.
The practice of palliative care in Portugal seems to be similar to those in other countries.
End-of-life (EOL) decision making is based on the values and wishes of terminally ill patients. However, little is known on the extent to which cultural factors affect personal attitudes toward life-sustaining treatments (LSTs) such as cardiopulmonary resuscitation (CPR) in China. This study evaluated the cultural and ethical considerations during EOL decisions and assessed the factors that affect pursuing LSTs in China. We used a case–control study design and compared their baseline characteristics with the provided EOL care and treatments. The CPR treatment among patients with cancer at EOL was affected by Chinese family traditions and Western influences. Our results reflect the need to improve EOL care and treatment in China.
Association between palliative case management (PCM) and the utilization of major health services during the last 30 days of life in Medicaid patients with cancer was assessed using retrospective cohort analysis. There were 132 PCM enrollees in the intervention group and 54 non-PCM enrollees in the comparison group. The intervention group had lower inpatient admission rate than that of the comparison group (56.8% vs 74.1%), lower ICU admission rate (12.9% vs 24.1%), longer mean hospice days (45.8 vs 31.1 days), and lower percentage of persons with death in hospital (24.2% vs 35.9%). No statistically significant differences were found in mean intensive care unit days (8.7 vs 9.7 days), treat-and-release emergency department visit rate (22.0% vs 16.7%), or hospice election rate (65.9% vs 70.4%). Palliative case management may reduce hospitalization and increase hospice use in patients nearing death.
End-of-life dreams and visions (ELDVs) are well documented throughout history and across cultures with impact on the dying person and their loved ones having profound meaning. Published studies on ELDVs are primarily based on surveys or interviews with clinicians or families of dead persons. This study uniquely examined patient dreams and visions from their personal perspective. This article reports the qualitative findings from dreams and visions of 63 hospice patients. Inductive content analysis was used to examine the content and subjective significance of ELDVs. Six categories emerged: comforting presence, preparing to go, watching or engaging with the deceased, loved ones waiting, distressing experiences, and unfinished business.
Despite increasing awareness about the importance of discussing end-of-life (EOL) care options with terminally ill patients and families, many physicians remain uncomfortable with these discussions.
The objective of the study was to examine perceptions of and comfort with EOL care discussions among a group of internal medicine residents and the extent to which comfort with these discussions has improved over time.
In 2013, internal medicine residents at a large academic medical center were asked to participate in an on-line survey that assessed their attitudes and experiences with discussing EOL care with terminally-ill patients. These results were compared to data from a similar survey residents in the same program completed in 2006.
Eighty-three (50%) residents completed the 2013 survey. About half (52%) felt strongly that they were able to have open, honest discussions with patients and families, while 71% felt conflicted about whether CPR was in the patient's best interest. About half (53%) felt strongly that it was okay for them to tell a patient/family member whether or not CPR was a good idea for them. Compared to 2006 respondents, the 2013 cohort felt they had more lectures about EOL communication, and had watched an attending have an EOL discussion more often.
Modest improvements were made over time in trainees' exposure to EOL discussions; however, many residents remain uncomfortable and conflicted with having EOL care discussions with their patients. More effective training approaches in EOL communication are needed to train the next generation of internists.
The nature of emergency end-of-life calls is changing as people live longer and die from chronic illnesses. This study explored prehospital providers’ perceptions of (1) end-of-life 911 calls, (2) the signs and symptoms of dying, and (3) medical orders for life sustaining treatment (MOLST). The exploratory–descriptive pilot study was survey based and cross-sectional. Calls to nursing homes occur most often, (47.8% every shift). The MOLST was seen infrequently (57.9% rarely never). The most frequent signs and symptoms of dying were diagnosis (76%), hospice involvement (82%), apnea (75%), mottling (55%), and shortness of breath (48%). The MOLST identifies wishes about intubation (74%), resuscitation (74%), life-sustaining treatment (72%), and cardiopulmonary resuscitation (70%). Synergy exists between the fields of prehospital, hospice, and palliative medicine which offers potential for improved education and care.
The underuse of hospice care by terminally ill African American elders suggests they are suffering when hospice care could offer quality end of life care. Guided by the Behavioral Model for Vulnerable Populations, this study sought understanding of structural barriers faced when seeking access to hospice care and reasons for using it when access is possible. Data was collected through interviews with 28 African American hospice patients. Themes from directed content analysis provide insights into strategies used to overcome access barriers posed by income, health insurance and administrative procedure, as well as the role religion, family, information and health beliefs played in using it. Distributing educational materials and addressing spiritual/religious concerns in choosing hospice care are key in promoting African Americans' use of hospice care.
Management of critically ill patients involves weighing potential benefit of advanced life support against preserving quality of life, avoidance of futile measures and rational use of resources.
Our study aims to identify the predisposing factors involved in the institution and maintenance of futile intensive care support in terminally ill cancer patients in whom no additional treatment for the malignant disease would be offered.
We retrospectively analysed the medical records of patients who died in a tertiary cancer hospital (Hospital A C Camargo, São Paulo, Brazil) during an eight month period. Medical futility was defined when a patient, despite having been stated in the hospital records as having no possible lifespan extending treatment, was admitted to intensive care and received advanced life support. These cases were compared to controls who received palliative end-of-life care.
Three hundred and forty-seven deaths were recorded, of which 238 did not undergo futile treatment, 71 received full code treatment and 38 received futile treatments. Statistically significant predisposing factors for medical futility were, in our analysis, lack of palliative care team consultation (p < 0.001) and hematologic malignancy (p = 0.036). Qualitative analysis of medical records traced futile treatments to physicians' lacking proactive attitudes in considering prognosis and talking to families.
We conclude that a significant minority of end-of-life care consists of futile treatments. Strategies to increase Oncologists’ and Critical Care specialists’ alertness to these issues and expand indications of Palliative Care consultations are recommended.
Many geriatricians care for terminally ill and dying patients, but it is unclear whether the current geriatric medicine fellows receive sufficient training in hospice and palliative care (H&PC). A national cross-sectional survey was conducted between March and June 2011 to determine fellows’ experience and perceived competency with H&PC. Fellows (143 of 298, 48%) and program directors (PDs; 69 of 150, 46%) answered the surveys on paper or online. Three-fourths of the fellows planned to practice H&PC; however, only 35% fellows versus 42% PDs believed that fellows were well prepared in this area. Factors associated with fellows’ self-reported better preparation included completion of an H&PC rotation, experiences with an inpatient hospice facility, inpatient palliative care consulting service, and the presence of a formal H&PC curriculum.
The concept of a "good death" has been intensely discussed over the past decades. The objective of this study is to investigate this concept among staff and patients’ relatives in 29 Bulgarian hospices and 5 palliative care units. Self-administered questionnaires were completed by 190 members of staff and 216 patients’ relatives. Death without pain and suffering and death in one’s sleep were leading concepts in both the groups. Staff preferred death in the presence of relatives, while relatives preferred fast and sudden death. Although we were able to define the common concept of a good death as painless and sudden death in one’s sleep, death is unique phenomenon and good palliative care should be based on communication with patients about their idea of a good death.
The purpose of this study was to investigate how HIV-positive patients and infectious disease health care providers think about death, dying, and end-of-life care (EOLC) planning. We conducted separate in-depth qualitative interviews with 47 patients and 11 providers. Interview data were transcribed and analyzed using a secondary comparative method. Patients and providers demonstrated profound differences in their perspectives on patient empowerment and attributions of control related to disease progression, imminence of death, and EOLC decision making. Notably, patients described fears related to life-extending interventions that generally went unaddressed within the clinical context. We argue for the routinization of EOLC discussions and suggest novel research approaches to improve patient empowerment and medical engagement.
The present study aimed to investigate difficulties in caring for a patient with cancer at the end of life at home and to examine relationships between difficulties with care and complicated grief. The 45 bereaved family members completed the Family Difficulty Scale (FDS) and the Inventory of Complicated Grief (ICG). The FDS score for "Patient’s pain and condition" was the highest, followed by "Caregivers did not want home care" and "No support from others." There was a significant relationship between FDS and ICG scores. These results suggest that the condition of the patient, the view of the caregiver on home care, and the absence of other support are important factors contributing to difficulties of family caregivers, and that these difficulties may lead to complicated grief.
Palliative care requires an interdisciplinary team approach to provide the best care for patients with life-threatening illnesses. Like palliative medicine, rehabilitation also uses an interdisciplinary approach to treating patients with chronic illnesses. This review article focuses on rehabilitation interventions that can be beneficial in patients with late stage illnesses. Rehabilitation may be useful in improving the quality of life by palliating function, mobility, activities of daily living, pain relief, endurance, and the psyche of a patient while helping to maintain as much independence as possible, leading to a decrease in burden on caregivers and family. Rehabilitative services are underutilized in the palliative care setting, and more research is needed to address how patients may benefit as they approach the end of their lives.
Hospital length of stay (LoS) may be used to assess end-of-life care aggressiveness and health care delivery efficiency. We describe the terminal hospitalization LoS of patients with cancer managed by a hospital-based palliative care (PC) program comprising a palliative care consultation (PCC) service and an inpatient palliative care unit (PCU). A total of 328 in-hospital cancer deaths were divided into 2 groups. The PCU group included patients admitted by the PC team directly to the PCU. The PCC group included patients admitted by other specialties and referred to the PCC team. The LoS of the PCU group was significantly shorter than that of the PCC group (9.9 [±9.4] vs 17.8 [±19.7] days, respectively; P < .001). Direct terminal hospitalization to PCU is not associated with longer LoS among cancer deaths managed by a hospital-based PC service.
Comparing characteristics of a favorable sedation course during palliative sedation to a less favorable course based on the reports Dutch physicians and nurses.
Cases identified as having a favorable sedation course less often concerned a male patient (P = .019 nurses’ cases), reached the intended sedation depth significantly quicker (P < .05 both nurses and physicians’ cases), reached a deeper level of sedation (P = .015 physicians’ cases), and had a shorter total duration of sedation compared (P < .001 physicians’ cases) to patients with a less favorable sedation course.
A favorable course during palliative sedation seems more probable when health care professionals report on a (relatively) shorter time to reach the required depth of sedation and when a deeper level of sedation can be obtained.
Purpose: Spirituality encompasses a wide range of meanings between holistic wellbeing and mysticism. We explored advanced cancer patients' spiritual experiences of transcendence. Methods: A total of 251 patients with advanced cancer were included and observed (participant observation) over 12 months by a psycho-oncologist/music-therapist. She recorded and documented patients' spontaneously expressed spiritual experiences during hospitalisation. Interpretative Phenomenological Analysis was applied. Results: 135 patients communicated a spiritual experience, as expressed by altered body-awareness, less pain, less anxiety, higher acceptance of illness/death, new spiritual identity. Spiritual experiences were communicated by patients across different religious affiliations/attitudes. We identified types of spiritual experiences. Conclusion: The occurrence of spiritual experiences seems to be frequent and associated with profound, powerful reactions. Our results indicate that experienced-based spiritual care may complement current needs-based approaches.
We aimed to investigate the improvement in symptoms, quality of life, patient and family satisfaction with care, and direct costs resulting from a palliative care program based case management model.
The research was implemented at the Medical Oncology Clinic hospital of a University between September 2009 and September 2011. The research sample consisted of a total of 44 patients (22 control and 22 intervention group). The research tools were the Edmonton Symptom Diagnosis System, the Karnofsky Performance Scale, the EORTCQLQ-C30 Quality of Life Scale, a patient and family satisfaction form, and a patient cost record form.
The difference between total symptom mean scores and the sub-dimension symptoms of pain, fatigue, nausea, depression, anxiety, lack of appetite, lethargy, well-being, dyspnea, and constipation post-hospitalization and post-discharge of patients in the control and experimental groups were found to be statistically significant (p < 0.05). The level of decrease in symptom severity in the experimental group patients was more than in the control group (p < 0.000). The satisfaction level of patients and family in the palliative care based case management service was higher than that for conventional service in the control group (p < 0.05). No statistical difference was detected between the experimental and control groups regarding health costs and duration of hospitalization (p > 0.05).
We provided a better symptom control, improved the patient s quality of life (excluding physical and congnitive functions), and patient and family satisfaction levels were higher in the palliative care based case management intervention group, but direct health costs were not affected.
This article describes a pilot model to increase palliative care (PC) knowledge and collaboration among providers and to systematically identify chronic multimorbid home care patients who would benefit from focused discussion of potential PC needs. Thirty health care providers from a home-based primary care team attended interdisciplinary trainings. The Palliative Performance Scale (PPS) tool was used to trigger discussions of potential palliative needs at team rounds for patients who scored below a cutoff point on the tool. Palliative Performance Scale implementation added little burden on nurses and triggered a discussion in 51 flagged patients. The tool successfully identified 75% of patients who died or were discharged. Screening was systematic and consistent and resulted in targeted discussions about PC needs without generating additional burden on our PC consult service. This model shows promise for enhancing collaborative patient care and access to PC.
Terminally ill patients experience negative symptoms at end of life (EOL) that hinder well-being and quality of life (QOL). Current intervention strategies are not always effective or feasible. A focused literature review to evaluate the use of biofield therapies (ie, Therapeutic Touch, Healing Touch, and Reiki) to manage the symptoms in EOL revealed no studies on the use these therapies, specifically in this population. Evidence from studies on relevant populations (patients with cancer, elderly patients, and patients experiencing chronic pain), which addressed the outcomes relevant to palliative and EOL care (EOLC; pain levels, changes in psychological symptoms, well-being, and QOL), supports the use of biofield therapies in relieving pain, improving QOL and well-being, and reducing psychological symptoms of stress. Further research to assess the use of biofield therapies in EOLC is clearly needed.
Dying of hematological oncology patients often take place in respective hematology ward or intensive care unit rather than hospice. With the increased attention to quality palliative care for hematology patients, concerns regarding their level of medical care at end-of-life need to be addressed. We conducted a retrospective review of consecutive hematological oncology patients who succumbed in a palliative unit between July 2012 and August 2013. The primary outcome measure was their level of medical care received, including administration of antibiotics, total parenteral nutrition, blood sampling, GCSF injection and blood products transfusion, during their last seven days of life. During the last seven days of life, 85.7 % of patients had blood sampling and 23.8% of patients received G-CSF injection. Total parenteral nutrition was administered in 14.3% of patients. One-third of patients received transfusion of packed cells and nearly half of them received transfusion of platelet concentrates. Almost 90% of patients received antibiotics during their last week of life. Collaboration between hematology and palliative care has resulted in successful transition of hematologic cancer patients into hospice unit in their terminal phase of illness. However, their level of medical care, even approaching last seven days of life, remained intensive. Proper allocation of medical resources and future research regarding optimal end-of-life care for hematology patients are warranted.
Morphine is the only opioid which has been clearly demonstrated as effective in the treatment of dyspnea. The role of other opioids has not been sufficiently substantiated.
To evaluate the efficacy of oral transmucosal fentanyl citrate (OTFC) in the treatment of dyspnea on exertion in patients with advanced cancer. Design: This is a randomized, double-blind crossover clinical trial to evaluate the efficacy of OTFC in dyspnea on exertion after the completion of a 6-minute walk test (6MWT). All patients were attended in 2011 by the Palliative Care Supportive Team from Badajoz. In visit 1, patients were randomly assigned to 1 of the 2 treatment groups. In visit 2, the patients who had been receiving the investigational product were given placebos and vice versa.
Thirteen patients were recruited (26 6MWT), with a mean age of 65 years. Of the patients, 11 (76%)were males and lung cancer was the most frequently represented etiology. The patients were classified into 3e categories: better response in the first period, the same response in both the periods, and better response in the second period. No differences between the treatments were demonstrated (P: 1). There were no differences in changes in oxygen saturation (P: .7541) nor in the distance walked in the different sequences (P: .6550). No significant differences were found in relation to the Edmonton Symptom Assessment System, either before or after the 6MWT (P: .1234). No secondary effects associated with the medication were observed.
It could not be demonstrated that the OTFC improved exertion dyspnea in patients with advanced cancer. A placebo effect was observed in all the patients.
The palliative care program in King Hussein Cancer Center (KHCC) is growing rapidly to serve the needs of patients with cancer and their families.
To describe the KHCC palliative care program and its integration into the oncology care.
Narrative review of our palliative care program.
Patients with cancer at KHCC have access to an interprofessional palliative care at different settings. In 2012, the inpatient team saw 400 consultations and 979 referrals and admissions. The outpatient clinic had a total of 1133 patient visits. The home care program provided a total of 1501 visits. Our program is a regional center for education and training and actively conducts research.
Our palliative care program may be a model for successful delivery of comprehensive cancer care in the Middle East.
The search for an underlying cause of altered mental status not uncommonly becomes more challenging in the hospice and palliative care setting. Due to multiple coexisting conditions that affect mental status and shifting goals of care, discerning that single cause in this venue can become frustrating and even nonbeneficial at times. We present a case of nonconvulsive status epilepticus (NCSE), which multiple reports have shown to be a rarely contemplated cause of impaired consciousness. A concise review of NCSE follows, with emphasis on conditions that present similarly, precipitating factors, diagnostic and therapeutic considerations, and prognostic implications. Nonconvulsive status epilepticus is a reversible cause of altered consciousness, particularly when recognized promptly. In a palliative care unit, treatment should ultimately be guided by the patient’s goals of care.
This study was undertaken to examine two aspects of care at the end of life. First, we wanted to see whether the cost savings demonstrated repeatedly in the US Medicare hospice population would also be observed in a commercial population in Tennessee. They were. The second primary interest we had was whether there were certain medical services that seemed to presage death. We found four categories of services that profoundly increase in number as the end of life is approached: primary care, hospital-based specialist, non-hospital based specialist, and oncologist services. It is hoped that these findings could lead to a simple predictive model based on readily available claims data to help identify candidates for Hospice Care earlier.
Combination opioid agonist/antagonist therapy has been shown to preserve bowel function in patients with chronic cancer pain. This retrospective study evaluated the efficacy and tolerability of prolonged-released fixed-dose oxycodone-naloxone (PR OXN) in consecutive outpatients with chronic cancer pain. Of 206 patients prescribed PR OXN (mean age 61.3 ± 12.9 years; 52.9% female), 31.5% were opioid naïve. PR OXN was associated with a significant decrease in pain score measured on a visual analogue scale over 28 days (P < .0001), without adverse effects on bowel function, nor change in laxative use. PR OXN efficacy and tolerability were similar in opioid-naïve and -experienced patients, and among age-stratified subgroups. No severe side effects occurred. In a real-life outpatient setting, PR OXN provided analgesia without bowel dysfunction in patients with chronic cancer pain.
This study investigated the rate of hospice use by Latinos and African Americans relative to their prevalence in the general population between 2004 and 2010 as a follow-up to a previous investigation. Archival data (N = 2625) were collected on patients' race/ethnicity, gender, marital status, length of stay in hospice, and reason for discharge. In contrast to previous findings, African Americans were more likely to utilize hospice services, but Latinos were less likely to use hospice services compared to the other groups. There were no differences among the racial/ethnic groups in terms of length of stay or disposition at termination. Strengthening efforts to reach a larger racial/ethnic representation in hospice programs may increase the rate of hospice use by some racial/ethnic groups but not others.
This study examined the relationship between race and advance care planning, hospitalization, and death among nursing home residents receiving hospice care. Secondary data analysis using the 2007 Minimum Data Set (MDS) was used to identify documentation of these activities for White, Black, Hispanic, and Asian residents with linear regression models fitted to each dependent variable. Across different types of advance directives, compared to White nursing home residents, Black, Hispanic, and Asian residents who received hospice services were significantly less likely overall to have documented advance directives. All racial groups were also more likely to experience hospitalization while on hospice, regardless of whether they had a documented "do not hospitalize" order. As nursing homes become more diverse, recognizing differences in hospice use and end-of-life planning will continue to increase in importance.
Incorporation of tablet computers (TCs) into patient assessment may facilitate safe and secure data collection. We evaluated the usefulness and acceptability of a TC as an electronic self-report symptom assessment instrument. Research Electronic Data Capture Web-based application supported data capture. Information was collected and disseminated in real time and a structured format. Completed questionnaires were printed and given to the physician before the patient visit. Most participants completed the survey without assistance. Completion rate was 100%. The median global quality of life was high for all. More than half reported pain. Based on Edmonton Symptom Assessment System, the top 3 most common symptoms were tiredness, anxiety, and decreased well-being. Patient and physician acceptability for these quick and useful TC-based surveys was excellent.
Young adulthood is a time of immense growth and possibilities. As a result, it is also a time when serious illness can have profound effects. This review examines the current data pertinent to young adult palliative care and discusses the challenges and opportunities where palliative medicine can enhance the care provided to this growing and vulnerable population. From the data, 2 primary themes emerged (1) ongoing young adult development not only generates unique biologic disease burdens and clinical treatment options but also requires frequent assessment and promotion and (2) binary health care systems often leave young adults without access to developmentally appropriate health care. Given its interdisciplinary approach, palliative care is uniquely poised to address the challenges known to caring for the seriously ill young adult.
End-of-life care is paramount in maintaining the quality of life of the terminally ill, protecting them from unnecessary treatment, and controlling costs incurred in their care. Training doctors to be effective end-of-life caregivers begins in medical school. A survey design was used to collect data from 166 first-year medical students before and after exposure to hospice or palliative care through an early clinical exposure program. Data demonstrated that students had a significant change in attitude scores after the observational experience (P < .05). Providing students with the opportunity to observe and participate in end-of-life care has a positive effect on attitudes toward the care of dying persons. We recommend that direct exposure to end-of-life care practices be incorporated early in the medical school curriculum.
Hematopoietic stem cell transplantation (HCT) is associated with a high risk of morbidity, making advance care planning (ACP) essential. The purpose of this study was to assess and compare proxy and HCT candidate distress levels (Distress Thermometer) before (T1) and after (T2) ACP question completion. 79 participants (40 HCT candidates, 39 proxies) rated their distress. The T1, T2 mean distress scores (SD) for HCT candidates were 3.13(2.27), 2.96(2.10); 43% and 38% endorsed clinically significant distress (≥4). Proxies reported 4.21(2.48), 4.33 (2.46); 62% endorsed significant distress at T1, T2. The majority of proxies endorsed distress levels that were clinically significant and comparatively higher (T1 (p = 0.047) and T2 (p = 0.009)) than their paired HCT recipients. Responding to questions about ACP did not increase overall distress ratings.
To examine comfort medication (CM) and noncomfort (NC) medication use in inpatients comanaged by palliative care (PC) near the end of life.
Chart review of inpatients comanaged by the PC service at 2 academic hospitals. Medications were categorized as CM and NC medication according to the published guidelines.
Seventy patients met inclusion criteria. In the final week of life, inpatients were receiving a mean of 6 CM (40 doses) and 7 NC medications (41 doses). Four new NC medications were started per patient, but only 3 were discontinued. The NC medications were most frequently discontinued on the day of PC consult, but 14% were stopped on the day of death/PC unit transfer.
Inpatients comanaged by PC continue to receive NC medications as they near the end of life.
Good communication is essential but sometimes challenging in pediatric palliative care. We describe 3 cases whereby miniature chairs made of various materials and colors were used successfully to encourage communication among pediatric patients, family, and health care professionals. This chair-inspired model may serve as a simple tool to facilitate complex discussions and to enable self-expression by children in the pediatric palliative care setting.
To develop a mindfulness-based palliative psychotherapy to address psychoexistential suffering in palliative care.
First, a theory of suffering was formulated by merging 2 models of suffering from 2 thematic analyses of 20 palliative care patients and 15 informal caregivers. Second, the results from a secondary thematic analysis of suffering caused by health care interactions were conceptualized into a psychotherapy framework. Third, principles of mindfulness were incorporated into the framework to form a mindfulness-based psychotherapy.
Mindfulness-based supportive therapy (MBST) was developed with the following 5 components of presence, listening, empathy, compassion, and boundary awareness.
We believe that MBST is a potentially useful psychological intervention in palliative care, specifically designed to address psychoexistential suffering of terminally ill patients.
Insomnia increases cancer symptom burden and impairs quality of life. The lack of standard definitions and treatment guidelines makes management difficult. Insomnia is common in most cancers but appears particularly so in lung, breast, and head and neck tumors. Older women seem most susceptible. Insomnia not only affects patients with cancer but also caregivers and families. Systematic screening is important. Few validated assessment scales are available. Nonpharmacologic therapies like cognitive behavioral therapy may help. New nonbenzodiazepine hypnotics may have some therapeutic advantages over older agents. Management of associated or contributory symptoms like fatigue, pain, and hot flashes with appropriate symptom-specific agents is important. Successful management may have a significant positive impact on global quality of life.
Care of the dying is a significant component of nursing practice particularly in hospitals. Nurses who work in certain areas like oncology, intensive care unit (ICU) face the care of the dying, more so than other units.
The survey was conducted to assess nurses' self-perception of their professional capability and comfort in the care of the actively dying. Determine if professional capability and comfort was associated with any of the six demographics characteristics (age, gender, clinical experience, education level, nursing unit, continuing education). Identify areas of clinical challenge to promote educational initiatives to stimulate best nursing practice in the actively dying.
The survey comprised of two parts: Part I with demographic characteristics and a single open-ended question, Part II with twenty questions on the domains recommended by the NCP.
Older age and greater clinical experience were associated with greater levels of capability/comfort. Most nurses felt professionally capable and comfortable in domains such as knowledge, physical and psychosocial care but bioethics, communication, cultural, spiritual and bereavement issues challenged ≥ 40%.
Nurses self-perceived professional capability and comfort levels in caring for the dying were positively influenced by older age, greater clinical experience and extensive continuing education. Bioethics, communication and grief impacted nurses personally and emotionally. Continuing education, organized debriefing, grief-counseling, and preceptors support should be routine for nurses who work in units with predictable high mortality.
Although most children with intellectual and developmental disabilities reside in the community, a subset of children with severe intellectual disability and complex medical needs reside in pediatric skilled nursing facilities. These children have elevated mortality with end-of-life care (EOLC) routinely provided. The present study explored policies and practice in such settings by surveying administrators, nursing directors, and medical directors in facilities across the United States. In addition to EOLC policies and practices, staff reported on their understanding of definitions of do-not-resuscitate orders, family involvement in EOLC planning, and the availability of in-service training. The presence of an official EOLC policy was associated with higher ratings of perception of effectiveness among staff. Staff felt more prepared and comfortable providing EOLC when in-service training was provided.
Higashi Sapporo Hospital is a cancer-specific hospital with palliative care doctors and certified oncologists. During case conferences held twice a week, we routinely evaluate the referred patients. In our case conferences, we selected patients who were referred to our palliative care division from other hospitals, with possible indications for cancer chemotherapies. We reviewed a total of 1215 patients who were referred to our palliative care division. We identified 18 cases as having indications for cancer chemotherapies. Among them, we identified 4 cases as having indications for standard cancer chemotherapies. All 4 patients tolerated the therapies well, responded to chemotherapy, and survived for more than 1 year. Conferences in which oncologists and palliative care doctors can discuss cases frequently and intimately are thought to be important.
To clarify physicians’ practices and attitudes regarding advance care planning (ACP) in palliative care units (PCUs) in Japan, we conducted a self-completed questionnaire survey of 203 certificated PCUs in 2010. Ninety-nine physicians participated in the survey. Although most Japanese palliative care physicians recognized the importance of ACP, many failed to implement aspects of patient-directed ACP that they acknowledged to be important, such as recommending completion of advance directives (ADs), designation of health care proxies, and implementing existing ADs. The physicians’ general preference for family-centered decision making and their feelings of difficulty and low confidence regarding ACP most likely underlie these results. The discrepancy between physicians’ practices and their recognition of the importance of ACP suggests an opportunity to improve end-of-life care.
This study surveyed 4 core hospice professionals (physicians, nurses, social workers, and chaplains) on their perceived level of interdisciplinary collaboration, the influences of interdisciplinary collaboration, and job satisfaction to determine potential similarities and differences based on profession and various demographic characteristics of the members or member hospices. Analysis found that there are overall no differences based on demographic characteristics. Differences between professions, while few, were largely in the area of perceptions on relationships between members of the hospice team. Specifically, social workers appear to perceive themselves as less connected to the other members of the interdisciplinary team, an area theorized to influence interdisciplinary collaboration. Difference between professions was also found in job satisfaction. Implications for hospice practice and interdisciplinary education are discussed.
Research has shown that African Americans (AAs) are less likely to complete advance directives and enroll in hospice. We examined barriers to use of these end-of-life (EOL) care options by conducting semi-structured interviews with hospice and palliative medicine providers and leaders of a national health care organization. Barriers identified included: lack of knowledge about prognosis, desires for aggressive treatment, family members resistance to accepting hospice, and lack of insurance. Providers believed that acceptance of EOL care options among AAs could be improved by increasing cultural sensitivity though education and training initiatives, and increasing staff diversity. Respondents did not have programs currently in place to increase awareness of EOL care options for underrepresented minorities, but felt that there was a need to develop these types of programs. These data can be used in future research endeavors to create interventions designed to increase awareness of EOL care options for AAs and other underrepresented minorities.
Communication skills are critical in hospice care but challenging to teach. Therefore, a hospice agency developed a communication skills laboratory for nurses and social workers.
Learners role-played 3 common hospice scenarios. The role-play modalities were in-person, Second Life, and telephone. Learners were scored on 4 communication aspects.
Learners in all modalities rated the laboratory as very effective. However, learners in the Second Life and phone modality showed greater improvements from scene 1 to 3 than those in the in-person modality. There were no significant differences in improvement between the Second Life and phone modalities.
Results support the effectiveness of this communication skills laboratory while using different teaching modalities and show phone and Second Life role-plays were more effective than an in-person role-play.
To determine whether burnout, role ambiguity, or conflict affects Australian hospice volunteers.
Hospice volunteers (n = 120) were invited to participate in this pilot survey. Quantitative data were analyzed using descriptive statistics, while the free-text responses were analyzed using thematic content analysis. The Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) Guidelines have been used to report this data.
A total of 97 participants completed the survey. The majority were middle-aged women who had been palliative care volunteers for more than 7 years and volunteered 14 hours/week (median). Participants reported low levels of role ambiguity (x = 8.4, standard deviation [SD] ±3.0) and conflict (x = 9.8, SD ±3.4) and described enjoying their volunteering and having no symptoms of burnout (76%).
Active hospice volunteers report low levels of role ambiguity, conflict, and burnout. Adopting a range of self-care strategies and working within a structured volunteer program appear to be important protective factors.
Black Americans are more likely than whites to choose aggressive medical care at the end of life. We present a retrospective cohort study of 2843 patients who received a counselor-based palliative care consultation at a large US southeastern hospital. Before the palliative consultation, 72.8% of the patients had no restrictions in care, and only 4.6% had chosen care and comfort only (CCO). After the consult, these choices dramatically changed, with only 17.5% remaining full code and 43.3% choosing CCO. Both before and after palliative consultation, blacks chose more aggressive medical care than whites, but racial differences diminished after the counselor-based consultation. Both African American and white patients and families receiving a counselor-based palliative consultation in the hospital make profound changes in their preferences for life-sustaining treatments.
Agitated delirium presents unique challenges for hospice and palliative care clinicians. Haloperidol, the recommended neuroleptic, may be ineffective at low dose, or poorly tolerated at higher doses.
This article reports on two patients with refractory agitated delirium. Both developed extrapyramidal symptoms from haloperidol and required rotation to an alternate neuroleptic. Patient #1 received 2000 mg/day oral chlorpromazine. Patient #2 received greater than 200 mg/day sublingual olanzapine. Control of agitation was achieved, though the doses were substantially higher than has previously reported in the literature. Each patient experienced considerable sedation, though this was an acceptable side effect for the family. Each patient was transferred from the acute care hospital to a location of family preference. There they died within a week of transfer.
Agitated delirium is a palliative care emergency. High doses of neuroleptic medications, with rotation to an alternate neuroleptic when side effects occur with standard haloperidol, may effectively palliate agitated delirium. This remedy can provide the patient with a peaceful dying in a place of their choosing.
We report 3 cases of pneumocystis pneumonia (PCP) in patients with advanced cancer who received palliative care. All patients received long-term steroid therapy for symptom management. A diagnosis of PCP was based on clinical symptoms and a positive Pneumocystis jiroveci polymerase chain reaction test from induced sputum specimens. Despite appropriate treatment, only 1 patient recovered from PCP. Long-term steroid, often prescribed in palliative care settings, is the most common risk factor for PCP in non-HIV patients. Pneumocystis pneumonia may cause distressing symptoms such as severe dyspnea, and the mortality rate is high. Therefore, it is important to consider PCP prophylaxis for high-risk patients and to diagnose PCP early and provide appropriate treatment to alleviate PCP-related symptoms and avert unnecessary shortening of a patient’s life expectancy.
Physician's use of prognostic tools may help to decide on the intensity of therapies provided and communicate with patients and their caregivers in a timely fashion. However, literature that describes knowledge, perceived limitations and overall use of these tools by doctors is lacking. By way of a physician survey, we attempted to look at the use of prognostic tools in our community of doctors in our department of internal medicine. Our results showed that overall physicians have superficial knowledge of prognostic tools. We also discovered that physicians believe these tools to be helpful, yet their availability is compromised by lack of exposure during formative years, their cumbersome structure and the impracticalities of remembering them at bedside.
Some US prisons are meeting the growing need for end-of-life care through inmate volunteer programs, yet knowledge of the motivations of inmate caregivers is underdeveloped. This study explored the motivations of inmate hospice volunteers from across Louisiana State (n = 75) through an open-ended survey, a grounded theory approach to analysis, and comparison of responses by experience level and gender. Participants expressed complex motivations; Inter-related themes on personal growth, social responsibility and ethical service to vulnerable peers suggested that inmate caregivers experience an underlying process of personal and social transformation, from hospice as a source of positive self-identity to peer-caregiving as a foundation for community. Better understanding of inmate caregiver motivations and processes will help prisons devise effective and sustainable end of life peer-care programs.
This study aims to clarify the predictive value of two prognostic prediction tools, the palliative prognostic index (PPI) and the palliative prognostic score (PaPS), in a setting of general hospital palliative care team for patients with advanced cancers in an acute care hospital in Japan. The retrospective observational study includes 247 patients for the PPI analysis and 187 patients for the PaPS analysis, all patients are older than 18 years, hospitalized with an advanced cancer, and referred to the palliative care team in an acute care hospital in Japan. The study successfully show that both the PPI and PaPS have an ability to divide patients into three groups, each with significantly different survival length (p<0.001). However, there are discrepancies in the results for predicting the length of survival between the study and the original studies conducted in hospice settings. The results suggest that although PPI and PaPS successfully divide patients into three groups with significantly different survival times, discrepancies exist in predicting the actual length of survival.
Understanding why some patients with terminal illness are reluctant to take sufficient medication to control pain is critical to effective pain management.
As a first step toward exploring the pain medication-taking behavior of palliative care patients, this pilot study tested a survey regarding pain medication adherence, medication beliefs, and quality of life (QoL).
Convenience sample; survey.
Six patients receiving inpatient Palliative Care consultations at an academic medical center answered questions about their outpatient pain medication-taking behavior.
Medication Adherence Report Scale (MARS), Beliefs about Medications Questionnaire (BMQ), Brief Pain Inventory (BPI), closed-response items from a pain medication adherence study in terminally ill patients, the McGill Quality of Life Questionnaire (McGill), and demographic items.
The battery of questionnaires took approximately 53 minutes; five of six participants were able to complete all items. Respondents reported moderate to severe pain (mean 4.3/10 for pain on average; 7/10 for worst pain in past 24 hours), and excellent medication adherence. When asked how much relief was provided by pain therapies, respondents reported a mean 73% (range 50-100%) relief. They expressed little concern about addiction, but more concern about medication-induced nausea and constipation. Overall QoL was good (mean 6.8/10, range 5-10, higher score better), with notably high scores in existential and support domains.
Inpatients receiving palliative care consultation were able to complete interviewer-administered questionnaires regarding their pain perceptions, medications, and QoL. Further studies using these instruments are feasible and could inform shared decision making about pain management.
Several studies from the United States and Europe showed that physicians’ religiosity is associated with their approach to end-of-life care beliefs. No such studies have focused exclusively on Hindu physicians practicing in the United States. A 34-item questionnaire was sent to 293 Hindu physicians in the United States. Most participants believed that their religious beliefs do not influence their practice of medicine and do not interfere with withdrawal of life support. The US practice of discussing end-of-life issues with the patient, rather than primarily with the family, seems to have been adopted by Hindu physicians practicing in the United States. It is likely that the ethical, cultural, and patient-centered environment of US health care has influenced the practice of end-of-life care by Hindu physicians in this country.
Despite shortening life, Parkinson’s disease (PD) is often not considered "terminal." Uncertainty exists about when to discuss end-of-life planning.
A survey was sent to patients with PD assessing attitudes toward the timing and initiation of discussions regarding their disease. Data were analyzed for patient preferences regarding communication.
Of 585 surveys, 267 were returned. Ninety-four percent of patients wanted prognosis and treatment information early. Half of the patients wanted to discuss advanced care documents early. Some wanted early discussions about end-of-life care planning (27%) or end-of-life care options such as hospice (21%). The majority felt shared responsibility for initiating discussions about life expectancy, advance care documents, and end-of-life care planning.
Preferences regarding end-of-life discussions vary. Consequently, neurologists should ask patients about their preferences for this information and offer discussion periodically.
Nausea and vomiting are common and often highly distressing symptoms in advanced cancer and in hospice and palliative medicine practice. Nausea and vomiting generally respond well to correction of the underlying etiology (when possible) and appropriate selection of antiemetic medication, but up to 7% of patients will have refractory symptoms. Dronabinol is extensively studied for chemotherapy-related nausea and vomiting, but there are only a few case reports of its use in nausea and vomiting unrelated to chemotherapy. We report a patient with end-stage ovarian cancer with peritoneal carcinomatosis and refractory nausea and vomiting who responded dramatically to addition of dronabinol. Dronabinol is usually well tolerated and may have several novel mechanisms of antiemetic action; further study of its scope of efficacy is warranted.
The aim was to investigate whether there is a relationship between strategy of coping with end-stage disease and cancer-related fatigue. The study was conducted using the Rotterdam Symptom Checklist, Brief Fatigue Inventory, and Mini-Mental Adjustment to Cancer scale to specify patient’s strategy of coping. Finally, 51 hospice care patients with cancer were analyzed. Main Findings: The majority of responders adopted 1 of the 2 styles; avoidance (belongs to adaptive coping) or anxious preoccupation (destructive or maladaptive). Less often moderate fatalism and helpless/hopeless (H/H) or fighting spirit were observed. Significant correlation has been found between H/H or fatalism strategy and fatigue. Conclusions: High level of fatigue had a negative impact on almost all aspects of daily living among people with H/H or fatalism strategy.
The purpose of the study was to discover how individuals diagnosed with a life-limiting illness experienced themselves as agents, even in the face of death. In this qualitative, multiple case study design, 4 female outpatient hospice patients with terminal illnesses received humanistic counseling to explore their experiences of themselves and their illness. A graded set of 8 levels of personal agency emerged from analyses of the texts of their sessions, ranging from a passive, objectified nonagentic mode to an active, autonomous fully agentic mode, with multiple subcategories representing further gradations within levels. Our results are consistent with guidelines for supportive and palliative care with advanced cancer, which specify that dying patients’ needs be assessed and that they be involved in decisions about their care.
This study aimed to prospectively clarify the accuracy of the Palliative Prognostic Index (PPI) for advanced cancer patients in home care settings.
The study included 66 advanced cancer patients who received home visiting services between April 2010 and June 2012, and who died at home or in the hospital. Using medical records from initial home visits, we prospectively calculated PPI scores along with sensitivity and specificity.
For 3- and 6-week survival, prognostic prediction showed respective sensitivities of 60% and 70.6%, and specificities of 87.0% and 71.9%.
The sensitivity of the PPI for advanced cancer patients in home care settings was lower than that reported for patients in palliative care units. Development of prognostic tools suitable for home care settings is needed.
Two separate studies were conducted to identify perceived barriers and enablers to referrals to community-based hospice palliative care volunteer programs in 2 Atlantic Canadian provinces. In study 1, a physician, home support nurse manager, social worker, and volunteer coordinator (VC) were interviewed. More barriers than enablers were identified. Based on these results and a review of the literature, a "Perceived Barriers and Enablers to Hospice Palliative Care Volunteer Referrals Questionnaire" (PBEQ) was developed. In study 2, a total of 10 VCs completed the PBEQ and (1) rated the extent to which they perceived 18 items to be barriers to referrals; (2) rated the extent to which they perceived 12 items to be enablers to referrals; and (3) described additional barriers and enablers. A Tips for Referrals sheet was created.
This article describes the patterns of use of pain medicines of HIV-infected patients during last months of life in an HIV university-affiliated outpatient clinic.
We retrospectively reviewed our databases and identified patients who died over the last 12 months in our clinic. Demographic, clinical, and laboratory information were abstracted.
A total of 41 patients died in our HIV outpatient clinic in a period of 12 months. Opioid analgesics were prescribed for 21 (51%) patients, with 10 (48%) of these patients prescribed short-acting opioid analgesics alone, In all, 11 patients (52%) were on a short-acting and long-acting opioid combination, and 30 (73%) patients experienced pain that was not adequately controlled.
Pain control during the last months of life for this population appears to be suboptimal. Better strategies are needed.
To compare the accuracy among 4 prognostic scores (Palliative Prognostic Score (PaP), Delirium-PaP (D-PaP), Palliative Prognostic Index (PPI), Objective Prognostic Score (OPS)) for predicting life expectancy in Korean cancer patients with weeks of survival, we conducted a retrospective study by reviewing medical records of 94 patients and compared the accuracy of 3-week and 30-day survival among the 4 prognostic scores. Three-week survival estimates were highest for the PaP and 30-day estimates were similar for the 4 prognostic scores. Area under the receiver operating characteristic curve was highest for the PaP and lowest for the PPI, but there were no significant differences. The prognostics scores did not differ from each other in a significant manner.
A family conference (FC) is an opportunity for the family and their physician to share their knowledge and concerns about the physical and psychosocial dimensions of care. Appropriate communication principles and practice are both important for an effective FC. The FCs guided by common sense principles and sound clinical practice (good structure, content, and process) have beneficial outcomes. (1) Creation of a therapeutic partnership so the family and medical team collaborate in the difficult task of sophisticated medical and psychosocial care of a complex illness. (2) Enhanced therapeutic management through education and support of the patient and primary caregiver (and other family members) to facilitate self-efficacy and convey realistic hope with careful sequencing of key messages. (3) Easier patient transitions from cure- to care-oriented management, with a formal (yet thoughtful and gentle) introduction to the principles and practice of modern palliative medicine.
This study was aimed at developing and piloting a school-based intervention on severe illness-induced bereavement through a project focused on spreading knowledge of palliative care among high school students (phases 0-II Medical Research Council Framework). The intervention entailed the screening of a topic-related movie and a classroom meeting. Eight classes from 2 high schools participated, and a before–after evaluation was used to assess intervention feasibility and impact. Valid questionnaires, including 2 open-ended questions focusing on bereavement and strategies for coping with loss, were filled in by 89% (before) and 84% (after) of the 159 students. In the after evaluation, content analysis on the "strategies" question showed that answers concerning closeness and sharing were reported more frequently. Positive feedback was collected as regards the overall experience.
A qualitative study was conducted with semistructured interviews to explore the experiences of stress in 20 palliative care providers of University Malaya Medical Centre in Malaysia. The results were thematically analyzed. Nine basic themes were generated: (1) organizational challenges, (2) care overload, (3) communication challenges, (4) differences in opinion, (5) misperceptions and misconceptions, (6) personal expectations, (7) emotional involvement, (8) death and dying thoughts, and (9) appraisal and coping. A total care model of occupational stress in palliative care was conceptualized from the analysis. This model may inform the development of interventions in the prevention and management of stress in palliative care.
Constipation is a common symptom at end of life, impacting patient outcomes and healthcare costs. Hospice and palliative care professionals often use practices based on anecdotal evidence. One such intervention is an oral preparation of petroleum jelly (OPJ), referred to as "Vaseline balls." This survey was designed to collect information regarding healthcare practitioners' knowledge and attitudes toward the use of OPJ for the management of constipation in hospice and palliative care. An online survey was distributed to physicians, nurse practitioners, nurses, and pharmacists who work with hospice and palliative care patients. A total of 67% (n=237/353) of responders reported being familiar with the use of OPJ. Results indicate there is a need for further clinical research on the use of OPJ to guide practice.
More than 30 years have passed since the introduction of the concept of palliative care in cancer care in Japan. However, the majority of the estimated three million cancer patients in Japan do not receive palliative care. Higashi Sapporo Hospital was established in 1983 as a hospital specialized in cancer care. The palliative care unit of our hospital currently consists of 58 beds. Our hospital is one of the largest hospitals in Japan in terms of the number of palliative care beds. On admission to our hospital, all patients are evaluated for palliative care by a multi-disciplinary team and some patients who undergo anticancer therapy receive palliative care when necessary. There are about 65 patients on average (28.3%) who are receiving only palliative care. In 2011, 793 patients died of cancer while admitted at our hospital. This number of cancer deaths accounted for 15% of the 5,324 cancer deaths in Sapporo City in the same year. Our hospital has played an active role according to the philosophy that "palliative cancer care is part of cancer medical care". We here report the current status of the contribution of our hospital to overcoming problems in palliative care and cancer care in Japan.
Low creatinine and albumin are found among the chronically ill patients. This study retrospectively reviewed albumin and creatinine levels for survival in patients upon admission.
Records of patients admitted over 2 months were reviewed. Recursive partitioning analysis (RPA) identified cutpoints in albumin and creatinine that predicted survival. Kaplan-Meier survival, Cox proportional hazards, and stepwise Cox analyses identified prognostic factors.
Of 83 patients, 81 were assessable. Variables for worse survival were albumin <3.1 g/dL, creatinine >0.93 mg/dL, and male gender. Albumin by continuous, median, RPA, and tertiles was significant; creatinine by RPA. Hazard ratio for albumin >3.1 was 0.28 (P < .001) and for creatinine >0.91 mg/dL was 1.8 (P = .046).
Albumin and creatinine are prognostically important.
Learning how to speak with patients about end-of-life topics is often anxiety provoking for medical trainees. However, it also provides a unique opportunity for personal growth. The surprising reward of having such a conversation is presented in this reflection.
Rationale: To evaluate factors associated with palliative care consultation (PCC) in an urban public hospital. Methods: A retrospective chart review of patients who died on inpatient medical services. Results: Patients with a PCC were more likely to have a "do not resuscitate" (DNR) order at the time of death (p<0.001) and had a decreased likelihood of death in the ICU (p<0.001). Factors associated with PCC in a multivariate analysis included: cancer diagnosis (p=0.01), at least a high school education (p=0.04), older age (p=.003), and birth outside the US (p=0.03). Conclusion: The increased PCC utilization for immigrants is in contrast to previously reported literature. This increased use may be because access to services in a municipal hospital is not driven by demographic and socioeconomic factors.
This study aims to improve recognition of hospice eligibility for patients with Parkinson disease (PD) by ascertaining which variables have a higher probability of occurring uniquely in 6 to 12 months before death when compared to 18 to 24 months before death. Participants were 339 patients who died who were diagnosed with PD or Parkinsonism and treated with dopaminergic prescriptions for at least 3 years in northwestern US Veterans Affairs medical centers. A range of indicators were compared across 3 time periods (30-36 months, 24-18 months, and 12-6 months before death) using within-subjects repeated measures design. Results indicate that body mass index less than 18, alone or combined with a shift in prescribing (when benefits of dopaminergic medications no longer outweigh their risk of side effects), may signal appropriate timing for hospice referral.
Pediatric critical care and oncology providers care for patients who have life-threatening or serious illness, yet they receive little palliative care education.
Compare oncology and critical care providers’ attitudes regarding palliative care.
An electronic survey assessed respondents’ opinions of whether, when, and why palliative care should be utilized.
Response rate was 49%. Critical care physicians were more likely to incorporate palliative care for psychosocial support; oncologists for symptom control. Those with palliative care education were more likely to involve in palliative care, did so earlier and for reasons other than end-of-life planning.
Oncology and critical care providers utilized palliative care for different reasons.
Conceptions of personhood are critical to the preservation of dignity and quality of life key to a good death and pivotal to the provision of patient centred care. Increasingly there is speculation that this role may be wider still. It has been posited that it is Confucian inspired conceptions of personhood replete with its `dualistic' view of personhood that sees family members as part of the individual's personhood that predispose to the prevailing practices of collusion and the trumping of patient autonomy. In a nation where family centric decision making still dominates end of life decision making, the need to appropriately conceptualise local conceptions of personhood are clear. To this end a mixed methods study of 30 Singaporean oncology and palliative care patients was undertaken. Data accrued revealed local conceptions of personhood to be evolving ideas that are determined by four equally important closely related dimensions. Here Innate Personhood which represents the belief that all persons irrespective of their clinical condition and level of development are deserving of personhood, Individual Personhood which relates to consciousness related faculties, Relational Personhood which relates to the social and familial connections important to the person and Societal Personhood which relates to the roles played in society; combine to proffer the Ring Theory of Personhood. This concept provides a better means of providing for the specific needs of patients with life threatening illnesses whilst providing a unique insight into the role families play in the manner local patients conceive themselves to be.
The purpose of this study was to examine the relationship between hematopoietic cell transplant candidate and proxy advance care planning (ACP) behavior and attitudes. A total of 49 candidates and 44 proxies completed the Advance Directive Attitudes Survey, Multidimensional Health Locus of Control Scale, Family Decision Making Self-Efficacy Scale, and the State-Trait Anxiety Inventory. In all, 45% of candidates reported completing an advance directive (AD), while only 26% had ADs on file; 80% of candidates discussed ACP wishes with their loved ones and 15% discussed ACP wishes with their medical team. The AD completers were significantly (1) older, (2) more positive about ADs, and (3) were less likely to believe that health events happen by chance. Discrepancies between reported ACP behavior and communication with health care practitioners have implications for end-of-life care.
This research assesses complementary and alternative medicine (CAM) use and administration for patients and family caregivers in Illinois hospice and palliative care organizations. An online survey was administered to a sample of 108 contacts of Illinois organizations listed in the National Hospice and Palliative Care Organization website, and 90.3% of the responding organizations offered some type of CAM. The top 5 most frequently offered CAM modalities to patients were pet therapy (64.5%), music therapy (61.3%), massage therapy (54.8%), art therapy (29.0%), and energy therapies (25.8%); these were the same top 5 offered to families but with different frequencies. Findings regarding utilization, administration, financing, and spiritual/cultural competency are discussed with policy recommendations for data collection, administrative improvements, and integration of CAM providers into service delivery.
This study examined the utilization and cost of all health services consumed during the last six months of life by cancer patients, and compared those with and without home-hospice care. Detailed information was extracted from the health care electronic administrative data files on 193 deceased cancer patients that their family approved the study (out of 429, 45%). About 88% had been hospitalized for 19 days on average and 53% visited the ER. One quarter received home-hospice care. Their average cost was $13,648 compared to $18,503 for patients without home-hospice care. Hospitalization contributed 32% to the total cost of patients with home-hospice care and 64% for those with it. The findings support the justification for significant expansion of home-hospice care.
Hospice services provided in the final months of life are delivered through complex interpersonal relationships between caregivers, patients, and families. Often, service value and quality are defined by these interpersonal interactions. This understanding provides hospice leaders with an enormous opportunity to create processes that provide the optimal level of care during the last months of life. The authors argue that the ultimate referral is attained when a family member observes the care of a loved one, and the family member conveys a desire to receive the same quality of services their loved one received at that facility. The point of this article is to provide evidence that supports the methods to ultimately enhance the patient’s and family’s experience and increase the potential for the ultimate referral.
We explored caregivers’ experiences and needs when providing hospice home care to their terminally ill elderly patients with cancer in Taiwan for 1 year. A total of 44 caregivers were interviewed using a semistructured interview once monthly during hospice home care visits until the patients’ deaths. Content analysis of the interviews revealed 5 themes, hoping for a cure, experiencing fluctuating emotions, accepting the patient’s dying, regarding the patient’s death as a good death, and needing emotional support and information. Caregivers in hospice home care who experienced difficulties tended to seek emotional support and information throughout the entire caregiving process. With a greater understanding of caregivers’ experiences and needs, nurses can alleviate caregivers’ negative emotional reactions by actively attending to their needs during this process.
Hemoptysis in patients with advanced lung cancer can be a life threatening.
To evaluate immediate outcomes and late outcomes of bronchial artery embolization (BAE) for palliative treatment in patients with advanced nonsmall-cell lung cancer (NSCLC) having hemoptysis.
The BAE was performed in 28 patients with NSCLC. Hemoptysis was defined as follows: massive bleeding greater than 300 mL within 24 hours (n = 8), moderate bleeding of 100 to 300 mL within 24 hours (n =12), and slight bleeding less than100 mL within 24 hours (n = 8).
Success rate was 96%. Immediate clinical success within 24 hours after BAE was achieved in 22 of the 27 patients who underwent embolization.
The BAE with gelatin sponge particles can provide good management of hemoptysis as a palliative treatment in patients with advanced NSCLC.
Nausea-vomiting is a common and unpleasant phenomenon with numerous underlying mechanisms and pathways that are not always well elucidated. In clinical practice, refractory nausea-vomiting is encountered in several settings. Antiemetic medications may reduce these symptoms but are not always effective in all patients. In the absence of a well-defined optimal strategy for management of nausea-vomiting, the search for better approaches to treat this distressing symptom continues. One of the alternative treatment approaches is a compounded formulation called ABHR gel that is comprised of multiple antiemetic medications and has been shown to be useful for symptomatic relief in some patients with refractory nausea-vomiting. It has been suggested that alternative mechanisms should be explored to explain the perceived efficacy of ABHR gel, because transdermal absorption leading to nil-to-minimal or subtherapeutic blood concentrations of active ingredients does not explain the role of ABHR gel in the treatment of nausea-vomiting. In the current paper, we discuss possible mechanisms that may explain ABHR transdermal gel's efficacy. Compounded ABHR transdermal gel formulation's efficacy in antagonizing nausea-vomiting that has been recently questioned may be explained by alternative mechanisms mediated through the P-6 acupoint stimulation and facial-nasal, cooling-related counterstimulation.
The Affordable Care Act requires US hospices to report quality data to the Centers for Medicare and Medicaid Services (CMS) in 2013 with data eventually being made public. There may be some benefit to participating in a voluntary public-reporting program prior to public disclosure by CMS; therefore, we developed and conducted an electronic survey exploring California hospices’ perceptions of public reporting. The majority (78.1%) of respondents reported current use of the Family Evaluation of Hospice Care tool and a willingness to consider voluntary participation in a public-reporting program outside of what is being implemented by CMS (58.6%). Tax status of responding hospices was not predictive of a willingness to participate in a statewide public-reporting program of hospice quality in our study.
To describe how preferences and treatment influence symptoms at end of life and site of death in pediatric cancer.
We included 61 pediatric palliative patients with cancer whose parents previously participated in a study that elicited preferences for aggressive chemotherapy versus supportive care alone and who subsequently died. Main outcomes were severe pain and dyspnea proximal to death and site of death.
Choice of aggressive chemotherapy predicted significantly more severe pain (odds ratio [OR] 3.1, 95% confidence interval [CI] 1.0-9.6; P = .049). Intravenous chemotherapy 4 weeks before death predicted severe dyspnea (OR 15.8, 95% CI 3.7-67.5; P < .001) and death outside the home (OR 0.3, 95% CI 0.1-0.9; P = .038).
Parental choice of aggressive chemotherapy and more aggressive treatment proximal to death predicted more pain, dyspnea, and death in hospital. Strategies to improve quality of life are needed.
Diverse strategies of analgesic adjustment are often, respectively, used to sustain analgesic efficiency for opioid-tolerant patients with different refractory factors of pain. In order to select effective analgesic adjustment strategy for hospice patient without knowing explicit causes of diminishing analgesic efficiency, a retrospective data of 743 patients among 3760 hospice patients were analyzed. The efficacy and adverse effects were not significantly different among analgesic adjustment strategies at each adjustment. Opioid duration was not associated with clinical characteristics. For opioid-tolerant hospice patients, the analgesic adjustment strategy can be selected for individual patient. After repeated analgesic adjustments, opioid tapering may also occur.
This article presents a comprehensive critical review of the peer-reviewed literature on palliative care and companion animals (CAs), reporting on the evidence and knowledge base regarding CAs and their role for people at end of life. PubMed, PsycINFO, Medline, Scopus, and Google Scholar were searched for studies pertaining to CAs, end of life, and hospice palliative care. Six studies dealt specifically with empirical research. The remaining literature addressed the topic peripherally or anecdotally. The evidence for efficacy and the knowledge base about the role of CAs at end of life in hospice and palliative care is weak. Further efforts are required to study the conditions under which CAs may be beneficial for patient care, including acceptability to staff, family, and other patients, and with consideration of welfare for the animals involved.
Although fatigue is experienced by everyone, its definition and classification remains under debate.
A review of the previously published data on fatigue.
Fatigue is influenced by age, gender, physical condition, type of food, latency to last meal, mental status, psychological conditions, personality type, life experience, and the health status of an individual. Fatigue may not only be a symptom but also a measurable and quantifiable dimension, also known as fatigability. Additionally, it may be classified as a condition occurring at rest or under exercise or stress, as physiologic reaction or pathologic condition, as spontaneous phenomenon or triggerable state, as resistant or irresistant to preconditioning, training, or attitude, as prominent or collateral experience, and as accessible or inaccessible to any type of treatment or intervention. Fatigue may be the sole symptom of a disease or one among others. It may be also classified as acute or chronic. Quantification of fatigability is achievable by fatigue scores, force measurement, electromyography, or other means. Fatigue and fatigability need to be delineated from conditions such as sleepiness, apathy, exhaustion, exercise intolerance, lack of vigor, weakness, inertia, or tiredness. Among neurological disorders, the prevalence of fatigue is particularly increased in multiple sclerosis, amyotrophic lateral sclerosis, Parkinson disease, traumatic brain injury, stroke, and bleeding and also in neuromuscular disorders. Fatigue may be influenced by training, mental preconditioning, or drugs.
Fatigue needs to be recognized as an important condition that is not only a symptom but may also be quantified and can be modified by various measures depending on the underlying cause.
In cancer patients early institution of therapy placed a very important role and delay in the diagnosis and treatment can cause catastrophe. Affirm step to cut shot this delay requires detailed information about each step of patient referral journey and for fulfillment of above aim, we interviewed 101 patients, to calculate the elapsed time at each step. Result revealed that onset of symptoms to median time of presentation to general practitioner is 20 (9 - 28) days, time consumed in state based hospital is 100 (15- 167) days while in Delhi based hospital is 56 (18 - 100) days. Higher cure rate (38.2%) in patients presented within 3 months of development of cancer symptoms then those presented late. Study concluded that primary physician and all the referral hospital attributed important role in early diagnosis and treatment of cancer.
To assess the experiences in an established 1-week palliative care placement for final year medical students attending the University of Newcastle, New South Wales, Australia.
A retrospective, mixed methodology, consecutive cohort. Student data collected included satisfaction feedback scores, open-ended questions and palliative medicine multiple-choice results before and after their 1-week placement.
Although there were high satisfaction ratings and objective improvements (P < .001) seen in multiple-choice quiz scores, a subset did not improve. Practical issues such as prescribing, opioid use, and conversions were particularly valued by students. More teaching time and practical experience were requested.
Given the importance of palliative care teaching within a medical degree, the results suggest continued development and review of palliative medical education are essential.
In the wake of the 2013 Presidential reelection, states now face the reality of implementing the healthcare reform, including ACA section 2302 (Concurrent Care for Children). The purpose of our study was to examine the influence of economic, political, and legal factors on state implementation of ACA 2302. Using data from 2010 to 2012, our analysis revealed that for early implementers economic, political or legal factors did not influence implementation of ACA 2302. In 2011, states that were engaged in Medicaid cost containment efforts were more likely to implement ACA 2302 and in 2012, states experiencing a budgetary crisis were less likely to implement ACA 2302. Our findings suggest that state-level implementation of ACA 2302 may be an important bellwether for future healthcare reform implementations.
Suffering is a complex experience. Identifying its predictors is useful to signal at-risk patients.
To identify suffering predictors in patients with advanced cancer in palliative care.
A total of 98 patients participated in the study. A semistructured interview examining suffering levels and physical, psychological, social, and spiritual aspects was used. Instruments included Pictorial Representation of Illness and Self Measure (PRISM), Edmonton Symptom Assessment System (ESAS), Detection of emotional distress (DED), and Structured Interview of Symptoms and Concern (SISC). Variance-based structural equation model was used for the data analysis.
All measures were valid and reliable. The structural model explained 64% of the variance. Suffering levels were directly determined by psychological and adjustment problems and indirectly determined by physical, psychological, and spiritual aspects and coping strategies.
Our study supports the proposed theoretical model and signals the important mediating effect of psychological and spiritual variables between physical symptoms and suffering.
We analyzed one case of end-stage liver disease and discussed whether the palliative care should be considered for this case. The medical record of a 56-year-old woman with alcoholic liver cirrhosis admitted to our hospital due to hypovolemic shock and esophageal varices (EV) was reviewed. The EV with active bleeding were arrested by panendoscopic intervention. However, repeat surgery revealed transmural laceration over the cardia, and immediate surgery and splenectomy were needed. The patient died postoperatively in the surgical intensive care unit due to bleeding tendency and hypovolemic shock. We suggest that palliative care and/or hospice care should have been considered for this patient before the crisis developed and that physicians require education about timely palliative and hospice care for patients with end-stage nonmalignant disease.
Hospice’s professional roles in end-of-life care can be widely misunderstood by physicians, patients, and family members as well as others who do not work directly with them. The role of the spiritual counselor may be the most misunderstood due to the nature of this professional title. Hospice care at the end of life is holistic in that it is important to meet physical, emotional, and spiritual needs of the patient and their family. In order to provide the most complete and beneficial end-of-life care, it is important to understand the complexity and the importance of the role of the spiritual counselor.
Australia’s population is aging and increasing. The palliative care needs of the population are also increasing in parallel, with more patients being referred to services for a broad range of reasons including symptom management, psychosocial support, and end-of-life care. Our study looks at how this manifests at on inpatient hospice in Melbourne, Australia, in terms of discharge destinations and allied health service utilization. We noted a trend in more discharges to residential care facilities, which appeared more likely for those patients who were admitted for assessment or had longer length of stay. Patients who were admitted for assessment also appeared in overall to utilize allied health services more than those admitted for end-of-life care. This information will help tailor resource allocation according to the current trends.
This study, conducted within a larger participatory action research project, explored satisfaction with end-of-life care among African Americans in a rural southeastern community. Researchers collaborated with practitioners and the African American community, conducting qualitative interviews with 1 African American hospice patient, 9 primary caregivers of terminally ill patients within hospice, and 10 family caregivers outside of hospice. Results indicated a more positive experience for hospice patients, and that most nonhospice participants preferred hospice after learning about it through the study. Participants made recommendations for public information efforts, the referral and intake process, and developing a relationship with the African American community. Implications for practice are to include the reasons found for African American preference for hospice in public information sessions with the African American community.
There are no guidelines regarding the discontinuation of antiretroviral therapy at the end of life.
We retrospectively reviewed our databases and identified patients with HIV/AIDS who died over the last 12 months in our HIV clinic.
A total of 41 patients from our HIV clinic died in a period of 12 months. Seventy-three percent of the patients were on antiretroviral therapy during the last clinic visit. During the last 3 months of life, 32% (13 of 41) were off antiretroviral therapy, with 77% (10 of 13) of them having intermittent therapy due to noncompliance. The remaining 23% (3 of 13) decided to stop antiretroviral therapy after discussion among families, patients, and providers.
Discussions among providers, patients, and families are encouraged to establish goals of care and role of antiretrovirals during the last months of life.
Postherpetic neuropathy (PHN) is common, severe, and often refractory to treatment. We treated 10 patients with refractory PHN using Scrambler therapy, a neurocutaneous stimulation device that delivers "nonpain" information with surface electrodes.
Scrambler therapy was given as 30-minute sessions daily for 10 days. Pain was recorded before and after treatment. Two centers.
The average pain score rapidly diminished from 7.64 ± 1.46 at baseline to 0.42 ± 0.89 at 1 month, a 95% reduction, with continued relief at 2 and 3 months. Patients achieved maximum pain relief with less than 5 treatments.
Scrambler therapy appears to have a promising effect on PHN, with prompt and continued relief and no side effects. Further research is warranted.
This exploratory study investigated meaning in life (MiL) in patients with progressive supranuclear palsy (PSP). In the "Schedule for Meaning in Life Evaluation" (SMiLE), respondents list individual MiL areas before rating their current satisfaction and importance with them (index of weighting [IoW], index of satisfaction [IoS], and index of weighted satisfaction [IoWS], range 0-100). A total of 38 patients with PSP completed the SMiLE (IoS: 68.6 ± 25.6, IoW: 79.6 ± 12.6, and IoWS: 69.2 ± 26.1). A representative sample of healthy participants (n = 977) scored significantly higher in the IoS (82.8 ± 14.7, P < .001), the IoW (85.6 ± 12.3, P = .006), and the IoWS (83.3 ± 14.8, P < .001). Compared to healthy individuals, patients with PSP were less likely to list health (P = .001) and more likely to list partner (P = .04), leisure (P = .01), home/garden (P = .01), and pleasure (P = .02). Patients with PSP seem to focus on supportive relationships and leisure, while the decreasing health status is becoming less important to them.
This study explored American Indians’ end-of-life experiences in treatment decision making. Scarce knowledge about this population’s perspective regarding end-of-life treatments has resulted in health care providers (HCPs) functioning at less than optimum levels. Using a community-based participatory research approach, open-ended interview data were collected and analyzed using a grounded theory method. Patient and family participants generally stated that the physicians made the treatment decisions for them, while HCPs believed that patients participated in informed autonomous treatment decision making. Both parties (HCPs and patients and families) were not aware of American Indian’s psychological aspect that interfered with the exercise of the right of informed consent. This additional understanding would benefit them in order to result in ethically and legally sound practice of patient’s autonomous treatment decision making.
This study aimed to examine effectiveness of the End-of-life nursing care continuing education program for general ward nurses. A nonrandomized, before-after trial was conducted. The program was implemented for 25 nurses. The contents of the program consisted of the family assessment, general symptom management and practical use of theories and models regarding end-of-life nursing care. The primary outcome, implementation ability of end-of-life nursing care, was significantly improved after the program; improvements continued even at 2 months after. Similar results were obtained for nurses' confidence and knowledge concerning end-of-life nursing care. As for attitude toward end-of-life care, participants' scores were further elevated after the program. The participants rated the usefulness of the program as high. The effectiveness of the program was suggested from these results. In the future, this program should be widely used for in-service training.
Palliative care consultations teams (PCCTs) promote comprehensive health but only if the PCCT can influence actual care. The purpose of this study is to document the types of recommendations made by a PCCT, determine the rates at which recommendations are implemented, and identify the factors related to implementation.
The mean number of recommendations per patient was 1.44 (standard deviation = 1.81), and 57% of the recommendations were implemented. Discharge and goals of care recommendations were significantly more likely to be implemented than recommendations for pain, symptom management, and consultation of other services.
Although PCCTs may have suggestions about how to guide care, many of those recommendations are not implemented. Future research is needed to understand how to maximize the impact of PCCTs.
We conducted a retrospective study by reviewing the medical records of 104 patients to assess the usefulness of the objective prognostic score (OPS) in an independent population of Korea. The median survival time (±standard error) of the high OPS group (≥3) was 9.0 ± 1.31 days and that of the low OPS group (<3) was 26.0 ± 3.3 days. The former was significantly shorter than the latter (P < .001). Only delirium (hazard ratio 1.751, P = .032) was related to shorter survival time independent of the OPS. This study demonstrates that the OPS is a valid and useful prognostic tool for predicting survival in terminally ill Korean patients with cancer, and that inclusion of delirium into the OPS may improve its prognostic value.
Using the National Home and Hospice Care Surveys, we examined trends in length of hospice care from 1996 to 2007 and the factors associated with length of care in 2007. Results suggest that the increasing average lengths of care over time reflect the increase in the longest duration of care. For-profit ownership is associated with hospice care received for over a year.
The utilization of pediatric hospice care remains unclear in Taiwan.
Data were analyzed from the claims of hospice admissions in patients aged 18 years or younger using the National Health Insurance Research Database from 2005 to 2010.
A total of 91 patients and 136 admissions were enrolled (male–female = 50:41; mean 11.6 years old). In all, 62 patients were admitted once, including 47 patients who died. All the patients had cancer, with brain cancer (40.7%) accounting the most . Among acute comorbidities, neurological complications (16.2%) were mostly accounted. Family physicians provided most (64.7%) of the hospice services. Hospice stay ≤3 days correlated positively with death in hospices (odds ratio = 2.922, 95% confidence interval = 1.268-6.730).
Pediatric hospice care revealed characteristics different from adults. Underlying late referrals were prevalent. There is space to promote the utilization of hospices for terminally ill pediatric patients.
This retrospective study investigates the types of delay in the initiation of palliative thoracic radiotherapy for superior vena caval obstruction (SVCO) of lung cancer (LCa) and the effect of treatment delay on patient outcomes. Treatment delays were categorized as patient delay (duration of symptoms), in-hospital delay, and professional delay and were determined in 42 people treated by radiation for palliation of the complicated neoplastic condition between 1981 and 2009. The median period of patient delay was 26.2 days, in-hospital delay was 3.5 days, and professional delay was 1.5 days. The majority (80%) of these individuals were uninsured or underinsured, and 69% presented with locally advanced LCa. The overall response rate was 84%, and the 1-year survival rate was 24%. Despite the longest patient-related delay, symptomatic individuals overall derived palliation from conventional treatment. Improved efforts toward early diagnosis and treatment of patients with SVCO-LCa need to be continued.
Terminally ill patients can have unexpected, enigmatic, and profound cognitive shifts that significantly alter their perception of themselves, thereby eliminating their fear of death and dying. However, there are no systematic studies into these remarkable yet ineffable transcendence experiences. They therefore remain easily overlooked or viewed as isolated anomalies and therefore excluded from quality-of-life patient considerations. We use a multimodal methodology for identifying the prevalence and thematic properties of complex emergent metaphors patients use to report these experiences. Although previous research has pioneered the importance of understanding conventional or primary metaphors at the end of life, our findings indicate the considerable potential of more complex metaphors for reducing barriers to effective communication in palliative care.
Central to the hospice philosophy is the belief that the patient/family owns the plan of care. However, barriers prevent the majority of hospice patients/families from participating in the meetings where plans are created and revised. This study evaluates the participant experience of the ACTIVE (assessing caregivers for team intervention via video encounters) intervention, designed to use web conferencing technology to overcome the barriers of participation in development and review of individual care plans. Interviews were done with hospice caregivers following the death of their loved one. Caregivers involved in the intervention reported positive relationships with the hospice staff, felt involved in decision making, and got answers to their questions. Furthermore they reported staff was responsive to their needs and that participation increased their confidence, trust in the team, and provided a feeling of not being alone if they needed help. Challenges included issues with the technology, a feeling of being rushed and a frustration when they did not feel included or involved. Suggestions for improving the intervention included a more frequent meeting time, a need for to train hospice staff how to conduct web-based interactions, and suggestions for additional information for caregivers.
This study aimed to examine the possibility of adaptation of the transtheoretical model (TTM) to narratives from the Bereavement Life Review. Narratives from 19 bereaved family members were recorded, transcribed into sentences, and allocated into stages based on the TTM criteria. Those who lived in fantasy were allocated to the precontemplation stage and who recognized the patient's death but could not adjust to the death were allocated to the contemplation stage. Those who understood the need for changes and had new plans were allocated to the preparation stage, and those who were coping were allocated to the action stage, and those who had confidence to remember the loved one who died were allocated to the maintenance stage. These results provide deeper understanding of a bereaved family member and suggest that a different intervention method may be useful in each stage.
There is limited research about the provision of complementary and alternative (CAM) in US hospices. The purpose of this study was to assess the factors that influence hospices’ likelihood of providing CAM therapies. Mail surveys were sent to 369 hospices in Texas; 61 were returned undeliverede, yielding a total usable response rate of 35.7% (n = 110) after an initial and one follow-up mail out. Binary logistic regression was used to assess whether the likelihood of offering CAM is related to hospice’s age, geographic location, agency type, profit orientation, Medicare certification, and number of patients served annually. Results showed that profit orientation and the number of patients served by hospices were significantly related to the probability that hospices will offer CAM. Specifically, the odds of offering CAM in not-for-profit hospices were approximately 4 times higher than that in for-profit hospices (odds ratio [OR] = 3.77, P = .022, 95% confidence interval [CI] = 1.2, 11.8). In addition, for every 100 patients served by the hospices, the odds of offering CAM increases by 13% (OR = 1.13, P = .015, 95% CI = 1.02, 1.25). In conclusion, CAM offering by hospices is related to hospices’ profit orientation status and number of patients served but is not related to other measured characteristics of hospices.
Formal palliative care (PC) education is lacking in the middle eastern state of Qatar. This study was done to assess the need for PC education among oncology nurses in Qatar.
In March 2012, a self-constructed questionnaire was distributed to 115 nurses at the Qatar National Center for Cancer Care and Research.
A total of 115 nurses responded to the questionnaire. The majority (87.8%) were female. Although 60% had more than 10 years of work experience, only 31% had received formal training in PC, with only 6.1% having completed postgraduate training. The majority (63%) of responders attributed this issue to unavailability of PC courses rather than lack of time, interest, or financial issues. Currently, only 16.7% did not express interest in the field, with 56% showing some kind of interest. In terms of knowledge, 54% of the responders were familiar with the World Health Organization ladder for pain relief. Only 43.6% know about Palliative Performance Scale, and half of the nurses know the Edmonton Symptom Assessment System. Overall, 56% of the nurses indicated a need for training in more than 1 aspect. These aspects included training in care of the dying patients (14.6%), communication strategies (22%), caregiver support (10.6%), psychosocial care (15%), pain management (10.2%), other symptom management (13%), and other ethical/spiritual issues (14.2%).
There is a clear deficiency in formal PC education among the nurses at the National Center for Cancer Care and Research, in Qatar. This is reflected by their lack of experience and exposure to PC and their mediocre knowledge in the field. This could be attributed to the fact that formal PC service was established only recently in Qatar (2008). Formal training courses in PC nursing are required.
A secondary analysis of 2 qualitative studies was conducted to explore the experiences of suffering caused by interactions with health care providers in the hospital setting. Interview transcripts from 20 palliative care patients and 15 palliative care informal caregivers in University Malaya Medical Centre were thematically analyzed. The results of health care interactional suffering were associated with themes of attention, understanding, communication, competence, and limitation. These 5 themes may serve as a framework for the improvement in interaction skills of health care providers in palliative care.
The aim of the study was to test whether high levels of caregiver burden, as other confirmed predictors, are associated with the risk of prolonged grief disorder in caregivers of terminally ill patients. A predictive study was carried out in order to test the hypothesis. A demographic schedule, the Prolonged Grief 12 (PG-12), the Toronto Alexithymia Scale, Hamilton Anxiety Rating Scale, Hamilton Depression Rating Scale, and Caregiver Burden Inventory were administered to 60 caregivers of 51 patients who were admitted in Hospice. In the regression analysis, difficulty in recognizing emotions, total burden, depression, and developmental burden dimension were significant predictors of PG-12 levels. Findings showed that feeling of deprivation of existential expectations represents the greater risk factor for the prolonged grief disorder, among the burden dimensions.
The objectives of the present study were to examine the prevalence of posttraumatic stress disorder (PTSD) and to identify predicative risk factors for PTSD in bereaved people after a terminal illness. Fifty-four persons (mean age 60 years) participated in the study. Demographic, peritraumatic, and psychosocial factors were assessed in order to identify variables that affected PTSD severity. Six months after the loss, 21.6 % of the subjects had PTSD, an 8.6 % decrease from PTSD measured one month after the loss. Intake of medicine after the loss, place of death, not having a close intimate, negative affectivity, and the A2 criterion predicted 65 % of PTSD severity. A considerable number of the bereaved were still at great risk for developing PTSD six months after loss.
There is no standardized method by which bereavement care is offered by hospice/palliative care units (PCUs) in Japan.
To evaluate bereavement services provided by hospice/PCUs and clarify demands for bereavement care.
Qualitative design based on semistructured interviews and content analysis.
Forty-four bereaved family members of patients with cancer who died in 9 PCUs in 4 regions.
Memorial services were positively evaluated for the following variables: reunion and interaction with staff; the service’s relaxed atmosphere; staff attentiveness; suitable location; suitable timing; program content; and interaction with other bereaved families. Memorial cards were positively evaluated regarding the level of concern shown by the staff and the personalized card. Respondents indicated their desire for a care system, a bereaved family care program, and information services.
The present study aimed to investigate the effects of the Bereavement Life Review on depression and spiritual well-being of bereaved families in a setting that does not specialize in palliative care. The participants were 20 bereaved family members who underwent the Bereavement Life Review over 2 sessions in 2 weeks. Beck Depression Inventory Second Edition scores significantly decreased from 14.4 ± 9.2 to 11.6 ± 7.4 (t = 2.15, P = .045) and Functional Assessment Chronic Illness Therapy–Spiritual scores increased from 24.3 ± 10.1 to 25.9 ± 11 (t = –1.0, P = .341) from pre- to postintervention. These results show that the Bereavement Life Review can decrease depression and improve spiritual well-being of bereaved families after the death of a family member in a setting without specialized palliative care. The results also suggest the universality of this therapy.
The acute palliative care units (APCU) where the palliative medicine specialists are primarily in charge with medical management are being established in few academic medical centers. The purpose of this study is to review the demographics and outcomes of the APCU admissions and the economical implications to the Montefiore Medical Center, Bronx, New York.
We retrospectively examined the demographics, diagnosis related groups (DRGs), length of hospital stay (LOS), discharge status and hospital charge data using data from intcernal cost accounting databases for consecutive admissions to the palliative care unit between February 2007and February 2010.
A total of 1837 patients were admitted. Six hundred eighty patients transferred from other medical-surgical units. Twenty two percent of the patients were admitted under other specialties but co-managed with the palliative medicine specialists. The top three DRGs were sepsis without or with mechanical ventilation and heart failure with major co-morbidities. The average length of stay was comparable to other medical surgical units. Seventy-two percent of the patients were discharged alive, 27% died in the hospital. The median charges were lower in the palliative care unit than in medical-surgical units (p<.0001). These benefits were more likely to occur if patients were managed directly by the specialists. Conclusion: Our data suggests that the APCU may provide cost effective, acute care for the patients with advanced chronic illness as well as the imminently dying in need of intensive symptom management.
This study assessed the patterns of nonhospice health care utilization among 207 deceased cancer patients and focused on outcomes after cancer treatment was stopped. A total of 117 (57%) were enrolled in hospice. The mean cumulative number of emergency department visits, hospitalizations, or other noncancer clinic visits (standard deviation) among those enrolled and not enrolled in hospice was 1.8 (± 1.8) and 3.11 (± 3.0), respectively (P < .0001). Among hospice enrollees, the mean cumulative visits (standard deviation) was 1.29 (± 1.7) and 0.5 (± 1.0) before and after enrollment, respectively (P < .0001). For patients who eventually enrolled, the rates of nonhospice health care visits (visits per week) yielded a trend to suggest a decline (P = .054). Hospice was associated with a drop in nonhospice-related health care utilization, thus suggesting it provides timely medical interventions and favorable continuity of care.
Some patients who receive hospice home care still end up dying in hospital. The significance of the variables possibly affecting the place of death in patients with terminal cancer who received hospice home care was examined.
Retrospective study.
Four hundred and thirty-nine patients were enrolled in this study. In all, 60.8% of the patients died at home and 39.2% of the patients died in hospital. Multiple logistic regression analysis revealed that preferred place of death was the prior factor associated with home death, followed by average days of rehospitalization, education level, distance between home and hospital, and age.
For a better hospice care service, it is essential to inquire patients or their relatives on preferred place of death while concerning the influences of other factors.
The social, emotional, cognitive, and spiritual challenges that may be a major concern for a certain category of end-of-life patients are the focus of a conceptual counseling model. The intervention that was developed as a result of several years of practice is referred to as therapeutic values clarification and values development. This article outlines 4 phases of this intervention. This therapeutic process is illustrated by a case vignette with explanation of the key concepts. This model is suggested for use with end-of-life patients that are self-aware, emotionally and cognitively competent, and have adequate verbal skills. It may be useful as an optional tool for hospice workers, social workers, and clergy who render services to terminally ill patients and their families.
Studies on methylphenidate for cancer-related fatigue showed conflicting results. This prospective study aims to determine whether methylphenidate is useful for relieving fatigue in Chinese patients with cancer. Chinese Version of Brief Fatigue Inventory (BFI-C) was administered on days 1, 8, and 29. Methylphenidate dose on day 1 was 5 mg daily then adjusted after day 8 according to response and side effects tolerance.
Only 48% of the 25 recruited patients were on methylphenidate by day 29. Overall, no significant improvement in fatigue level was observed after methylphenidate, though benefits were shown in subgroups with age ≤ 65 and higher baseline BFI-C values.
Methylphenidate may be useful for management of cancer-related fatigue in selected Chinese patients.
Nine adults who worked at least 1 year with patients at US hospice centers completed an in-person audiotaped dream session focusing on a dream about a patient. Data were analyzed using consensual qualitative research. Patients were generally manifestly present in participants’ dreams, and dreams were typically realistic (ie, not bizarre). In the dream, the dreamer typically interacted with the patient as a caretaker but was also typically frustrated by an inability to help as fully as desired. Dreams gave dreamers insight into the stress of hospice work, their own fears of death, and inter-/intrapersonal interactions beyond hospice work. Dreamers generally sought to take better care of themselves and find balance in their lives after the dream session. Implications for research and practice are discussed.
The purpose of this study was to describe the prevalence, importance, and challenges of complementary and alternative medicine (CAM) utilization in Texas hospices. Mail surveys were sent to 369 hospices in Texas, and 110 useful surveys were returned. Results showed that a majority (n = 62, 56.4%) of hospices offer CAM to their clients, with the most popularly offered CAMs being massage, music, and relaxation therapies. Despite the availability of CAM services in most hospices, and that the utilization of CAM has the potential to improve overall quality of life of patients, our results showed that a sizeable proportion of patients in these hospices are not utilizing the provided CAMs. Funding and personnel constraints were substantial obstacles to offering CAM.
This study examined the prevalence of completion of advance directives (ADs) and the effects of race/ethnicity on AD completion using a cross-sectional design. Low-income older adults (n = 256) who were residents of supportive housing facilities or members of a senior center were interviewed in person. About 20% of the participants had completed ADs. Knowledge and attitudes toward ADs, income, and previous experience in an intensive care unit significantly predicted the completion of ADs after controlling for other factors. Those with higher levels of knowledge, positive attitudes, or those with higher incomes were more likely to complete ADs than their counterparts. Findings suggest that as a proxy for multiple socioeconomic, social and cultural factors, race, and ethnicity need to be considered in planning end-of-life care.
Palliative care services are not available in most outpatient oncology practices. A program training 11 mid-level providers from oncology practices on advanced directive discussions and supportive symptom assessment and management performed by palliative care specialists was completed. A follow-up session 9 months later identified barriers to implementation. Of the 11 mid-level providers, 8 participated in the follow-up session, and 9 of the 11 providers implemented advanced directive’s discussions and symptom assessment and management for patients with metastatic cancer. Main barriers included uncertainties about reimbursement, patients’ lack of knowledge about palliative care, and lack of access to supportive services. This program successfully promoted advanced directive discussions and supportive/palliative care symptom assessment and management to community oncology practices, which will hopefully translate into improved quality of life for patients with metastatic cancer.
We aimed to assess leaflet-based intervention effects on family-perceived distress, the need for improvements in professional care for delirium, and family knowledge of delirium causes.
Leaflet-based intervention effects were assessed by comparing responses of family members given in the leaflet with those of a historical control group not receiving it.
Knowledge of delirium causes was significantly more likely to be correct in the intervention group, while there were no significant differences in family-perceived distress or need for improvements in professional care for delirium between the 2 groups.
The leaflet providing information about delirium improved family knowledge of cancer delirium. To relieve family distress, a comprehensive program focused mainly on psychological aspects, in addition to educational intervention with this leaflet, is a promising strategy.
Insomnia is underrecognized in patients with cancer. By identifying clinical correlations and predisposing factors of insomnia, interventions may be initiated to treat insomnia.
Consecutive patients referred to palliative medicine services were screened with a single question. Patients answering affirmatively completed the Insomnia Severity Index (ISI). Patients were screened for depression, fatigue, and pain. Spearman correlation was performed for associations.
Of 715 consecutive patients, 102 had sleep problems and 64 had clinical insomnia by the ISI criteria. Insomnia correlated with depression (r = .32), pain (r = .29), and tiredness (r = .40) but not with age or precipitating factors.
Insomnia severity moderately correlates with depression, pain, and tiredness. We found no association of insomnia severity with age or medications.
Insomnia, pain, depression, and tiredness are a symptom cluster.
Many primary care providers feel uncomfortable discussing end-of-life care. The aim of this intervention was to assess internal medicine residents’ advance care planning (ACP) practices and improve residents’ ACP confidence. Residents participated in a facilitated ACP quality improvement workshop, which included an interactive presentation and chart audit of their own patients. Pre- and postintervention surveys assessed resident ACP-related confidence. Only 24% of the audited patients had an advance directive (AD), and 28% of the ACP-documentation was of no clinical utility. Terminally ill patients (odds ratio 2.8, P < .001) were more likely to have an AD. Patients requiring an interpreter were less likely to have participated in ACP. Residents reported significantly improved confidence with ACP and identified important training gaps. Future studies examining the impact on ACP quality are needed.
Steroids are commonly used for fatigue relief in terminally ill cancer patients. However, steroid-induced adverse effects including depression, myopathy, and hyperglycemia may contribute to fatigue. We report our experiences with aggravation of fatigue with steroid use in three cases. Case 1 was a 65-year-old man with advanced gastric cancer. He was started on betamethasone (2 mg/d) for fatigue, but the fatigue worsened due to steroid-induced depression. Discontinuation of steroids and initiation of an antidepressant ameliorated the fatigue. Case 2 was a 68-year-old man with advanced lung cancer. He complained of fatigue. Betamethasone (1 mg/d) was started and alleviated the fatigue. However, when the betamethasone dose was increased to 2 mg/d, the fatigue, with muscle weakness and myalgia, worsened due to steroid-induced myopathy. We therefore switched from betamethasone (2 mg/d) to prednisolone (10 mg /d). The fatigue resolved and the patient returned to his previous condition. Case 3 was a 73-year-old man with recurrent bile duct cancer. He also had diabetes mellitus. He developed fatigue, anorexia and fever. We started betamethasone (1.5 mg/d) for these symptoms, but the fatigue and anorexia worsened due to steroid-induced hyperglycemia. Blood glucose rose to 532 mg/dL. Therefore, insulin therapy was started, and the dose of betamethasone was reduced to 0.5 mg/d. His glucose level decreased to less than 320 mg/dL and he recovered from the fatigue while achieving moderate oral intake. In conclusion, the possibility of steroid-induced secondary fatigue in terminally ill cancer patients should be taken into consideration.
This survey examines the quantity, quality, and accessibility of recent research that contributes to the evidence-based implementation of a palliative approach to end-stage kidney disease (ESKD). An electronic search identified published articles (between September2009 and August 2011) relevant to adults with ESKD (n = 1628). Few articles (n = 136) referred to key themes in a palliative approach to care: life-limiting illness, holistic care, and unit of care. Most of the relevant empirical articles used designs that did not allow a causal variable to be identified, and evaluations of interventions were rare. The literature was dispersed and often in journals unlikely to be regularly accessed by renal clinicians. Literature supporting the implementation of a full evidence-based palliative approach to ESKD is expanding but remains limited and is difficult to identify and access.
Background: The Liverpool Care Pathway (LCP) is extensively used in hospices, but the literature on the process of implementation is scarce. Aim: Developing, piloting, and preliminarily assessing the LCP program within the inpatient hospice setting. Methods: This is a phase 0-1 study, according to the Medical Research Council (MRC) Framework, divided into three phases: literature review on LCP in hospice and development of the Italian version of the LCP program (LCP-I), development of a procedure for assessing the quality of the implementation process and assessing the feasibility of the implementation process, and piloting the procedure in 7 inpatient Italian hospices. Results: The LCP was implemented in all the hospices involved. A high proportion of physicians (50%-100%) and nurses (94%-100%) attended the self-education program. The self-implementation of the LCP-I program was completed in all hospices. The proportion of patients who died on LCP-I ranged between 35.6% and 89.1%. Professionals from 2 hospices reported a positive impact of the LCP-I. Conversely, professionals from 2 hospices did not recognize a positive impact of the program and did not agree to maintain the LCP-I in hospice. Finally, professionals from the other 3 hospices reported intermediate evaluations (1 stopped to use the LCP-I). Some weaknesses emerged from the external audits, related to the self-education and the self-implementation approach. Professionals required an external support from a trained palliative care team with reference to both phases. Conclusions: The LCP-I implementation within hospices is feasible, and the process of implementation is evaluable. Issues that occurred within the implementation process suggest the introduction of an external support from a trained palliative care team in implementing the LCP program.
Many recently bereaved persons experience vivid and deeply meaningful dreams featuring the presence of the deceased that may reflect and impact the process of mourning. The present study surveyed 278 bereaved persons regarding their own perspective of the relationship between dreams and the mourning process. Fifty eight percent of respondents reported dreams of their deceased loved ones, with varying levels of frequency. Most participants reported that their dreams were either pleasant or both pleasant and disturbing, and few reported purely disturbing dreams. Prevalent dream themes included pleasant past memories or experiences, the deceased free of illness, memories of the deceased's illness or time of death, the deceased in the afterlife appearing comfortable and at peace, and the deceased communicating a message. These themes overlap significantly with previous models of bereavement dream content. Sixty percent of participants felt that their dreams impacted their bereavement process. Specific effects of the dreams on bereavement processes included increased acceptance of the loved one's death, comfort, spirituality, sadness, and quality of life, among others. These results support the theory that dreams of the deceased are highly prevalent among and often deeply meaningful for the bereaved. While many counselors are uncomfortable working with dreams in psychotherapy, the present study demonstrates their therapeutic relevance to the bereaved population and emphasizes the importance for grief counselors to increase their awareness, knowledge, and skills with regards to working with dreams.
The role of nutritional support on terminally ill patients with cancer in a palliative care unit has not been clarified. A total of 63 patients were retrospectively investigated; the patients receiving individualized nutritional support (intervention group [n = 22]) were compared to the others (control group [n = 41]). The intervention group received individualized nutritional support. There were no significant differences in the characteristics of patients between the groups. The prevalence of bedsores was significantly lower in the intervention group (14% vs 46%, P = .012). The prevalence of edema and the use of antibiotic therapies tended to be lower in the intervention group than in the control group (36% vs 54%, P = .19; 14% vs 27%, P = .34, respectively). Some terminally ill patients with cancer in a palliative care unit might benefit from nutritional support.
In Japan, regarding the place of end-of-life care, many people preferred the home. However, there is a discrepancy between patients’ wishes and the actual circumstances. The primary aim of this study was to explore the factors that determine discharge home of patients in a palliative care unit. A total of 31 patients met the criteria. The patients who could be discharged home (group 1; n = 23) were compared with the others (group 2; n = 8). Palliative prognostic index was significantly lower in group 1 than in group 2 (P = .032). Regarding routes of feeding, oral intake was significantly higher in group 1 than in group 2 (P = .043). That is to say, factors determining discharge home of patients may be influenced by the patient’s prognosis and the necessity of a feeding device.
Established hospital palliative care consult services (PCCS) have been associated with reduced costs and length of stay, decreased symptom burden, and increased satisfaction with care. Using a retrospective case–control design, we analyzed administrative data of patients seen by PCCS while hospitalized at the Rochester, Minnesota Mayo Clinic hospitals from 2003 to 2008. The PCCS patients were matched to 3:1. A total of 1477 patients seen by the PCCS were matched with 4431 patients not seen. Costs for patients seen and discharged alive were US$35 449 (95% confidence interval [CI] US$34 157-US$36 686) compared to US$37 447 (95% CI US$36 734-US$38 126), without PCCS consultation. Costs for PCCS patients that died during hospitalization were US$54 940 (95% CI US$51 483-US$58 576) and non-PCCS patients were US$79 660 (95% CI US$76 614-US$83 398).
This article explores the hypothesis that when a child has a life-limiting illness, the interpersonal boundaries between the patient, the patient’s parents, and the health care team members differ from traditional provider, patient, and parent boundaries because of the unique dynamics of palliative care in pediatrics. Providers from the Journey’s Palliative Care Team at Albany Medical Center completed a brief survey about working in pediatric palliative care and what ethical challenges they have faced in trying to maintain professional boundaries as new palliative care providers. A retrospective review of survey responses and a review of relevant literature offer insight into the various concerns reported by the Journey’s team. Conclusions about delivering comprehensive ethically sound palliative care services may serve as a pathway for future studies.
The main aim of palliative care is to provide relief from pain and distressing symptoms and to offer psychological and spiritual support to enhance the quality of life. We present a case of an elderly Chinese patient with major depressive disorder who was a doctor himself, and through his experience of treating patients had become afraid about the complications of advanced disease. He wished to forgo treatment, which was in conflict with those of his family. This report highlights the role of the palliative medical team in improving outcomes through enabling communication to occur between the family and the patient to achieve the best outcomes. This should lead to better training provision for the involved medical staff.
The cost of hospice care is rising. Although providing care for children at end of life may be costly for hospices, it is unclear whether or not gaining pediatric knowledge and even establishing a pediatric program may be done cost effectively. The purpose of our study was to examine the effect of possessing pediatric knowledge (i.e., pediatric program, pediatric experience) on core hospice care costs. Using 2002 to 2008 California hospice data, the findings of the regression analysis suggest that having pediatric knowledge does not significantly increase nursing, physician, and medical social service costs. Having a pediatric program was related to increased counseling costs. Our findings shed important light on the minimal costs incurred when hospices decide to develop pediatric knowledge.
The palliative care population is generally vulnerable to experiencing medication-induced adverse effects and drug–drug interactions. Neuromodulation may offer particular advantages over systemic medications in this population. Spinal cord stimulation and peripheral nerve stimulation have long been utilized in efforts to provide analgesia for various painful conditions. More recently, deep brain stimulation/motor cortex stimulation has anecdotally been utilized for certain intractable pain states. Although brain electrical stimulation has not been adequately trialed or in some cases even tried at all for management of a variety of symptoms, it is conceivable that in the future it may be a potential therapeutic option in efforts to palliate various severe refractory symptoms (eg, intractable pain, nausea, dyspnea, delirium).
Background: The effectiveness for improving the outcomes across palliative care domains remains unclear. We conducted a systematic review of different types of quality improvement interventions relevant to palliative care. Methods: We searched PubMed, CINAHL, PsycINFO, and Cochrane for relevant articles published between 2000 and 2011. Results: A total of 10 randomized controlled trials and 7 nonrandomized controlledtrials were included. Of the 5 studies using relay of clinical information, 1 reported significant improvement in patient quality of life. Of the 5 studies targeting education and self-management, 4 found significant improvements in quality of life or patient symptoms. Conclusion: A minority of quality improvement interventions have succeeded in improving the quality of palliative care delivery. More studies are needed on specific quality improvement types, including organizational change and multiple types of interventions.
This study was conducted to provide lessons learned from the experience of a small, rural hospice care organization to an actual crisis that required evacuation of the facility. A process improvement framework using the emergency response certification guidelines was used to first provide details of the incident, second analyze the effectiveness of disaster planning and response in response to an actual crisis, and third discuss the postevent review, lessons learned, and process improvement. This case study revealed 5 emerging themes—disaster can happen at the most inopportune times, facilities should focus on the most likely hazards, written agreements are needed even in small tight-knit communities, redundancy of resources is needed, and disaster planning and response is a process that should be continually improved.
This qualitative pilot study explored perspectives, needs, and concerns relating to advance care planning among older homeless adults. Twenty-one older adults residing at a transitional housing facility in an urban area of the West coast were interviewed in person. Key emergent themes included discomfort with the topic, trust in God’s decisions, physicians preferred as decision makers, and planning is important but not an immediate concern. Further, people who are homeless want to be approached with sensitivity. Instead of simply eliciting life-sustaining treatment preferences of homeless people, health care professionals should assess their unique concerns and needs regarding death and dying, prepare them to consider their possible end-of-life situation, and assist them to plan in accordance with their needs.
Introduction: The decision-making process underlying caregivers’ choice to continue feeding at the end of life is not well understood. Objectives: To provide a better understanding of the complex interplay of factors that influence the decision by caregivers to continue feeding. Methods: Palliative care patients and their main caregiver recruited at National Cancer Centre Singapore between May and July 2011 were included. Data were collected using an interviewer-administered questionnaire. Results: One hundred respondents were included. Three major prevailing themes were identified: filial piety, source of hope, and expression of affection. Nonparametric statistical testing showed that patients and caregivers shared similar views about feeding at the end of life. Discussion: The major themes identified above undergird the caregiver’s decision to continue feeding at the end of life.
Pain is a common and debilitating symptom of human immunodeficiency virus (HIV) disease, although it is often underestimated and undertreated, especially in HIV-infected intravenous drug users. It is more likely to occur in the later stages of the HIV disease, where it assumes particular significance, especially in terminally ill patients. However, its successful management is possible, though the goal of effective therapy is hampered by the side effects of highly active antiretroviral therapy and drug–drug interactions. In order to appraise these issues, a search in MEDLINE database was conducted. Book reviews and a search on relevant Web sites were also included. Treatment of HIV is itself very complex and becomes even more difficult when palliative therapy is added. Protease inhibitors, mainly ritonavir, and nonnucleoside reverse transcriptase inhibitors have higher interaction potential, due to their inducer or inhibitory actions on cytochrome P450, posing a risk when coadministered with palliative treatments; so, better outcomes can be achieved with knowledge of pharmacological aspects.
Background: Low-income and minority persons, such as Latinos, encounter substantial barriers in accessing effective end-of-life (EOL) care. This study intends to review current evidence on how to deliver EOL care to Latino elders.Methods: Literature search in PubMed and Ovid Web sites of articles indexed in Medline (1948-2011), Cochrane (2005-2011), Embase, and PsychInfo (1967-2011) databases. Articles were included if they contained (1) study participants’ race/ethnicity, (2) adults or population older than 60 years, and (3) information related to EOL care.Results: A total of 64 abstracts were reviewed, and 38 articles met the inclusion criteria. After reviewing the quality of evidence, 4 themes were identified and summarized: EOL preferences, hospice, Latino culture, and caregiving.Conclusion: Latino elders have traditional acculturation practices, face EOL decisions with family support, and, if educated, are receptive toward hospice and caregiver support.
In the United States, the court-appointed guardians do not have the ability to make decisions regarding end-of-life (EOL) care for their clients. Additionally, the process of initiating EOL care measures can be slow and cumbersome, despite an existing process of getting approval for such care. This process has the potential to prolong suffering and delay imperative decisions. This article reviews the hardships that patients, court-appointed guardians, and health care staff endure while moving through the oppressive process of obtaining EOL care orders through the court. This article also proposes ways of tuning up the laws, regulations, and communications to make it easier and faster to obtain orders regarding EOL care to preserve the dignity of our patients and loved ones. "A guardianship is a legal relationship created when a person or institution named in a will or assigned by the court to take care of minor children or incompetent adults."6
This study aimed to clarify the general public’s perceptions of opioids and palliative care units (PCUs) and explore factors related to such perceptions. A cross-sectional, anonymous questionnaire was administered to 8000 people. Although a majority agreed with positive perceptions of opioids and PCUs, some also agreed with negative perceptions, such as opioids are addictive and shorten life (28% and 27%, respectively). Multiregression analyses revealed that respondents with a better knowledge of PCUs had higher positive perceptions than those without such knowledge (P <.001). The higher positive perceptions were associated with a higher sense of security regarding regional cancer care (P < .001). Providing the general public with adequate knowledge about palliative care may improve perceptions of palliative care and the sense of security.
Introduction: Patients with advanced chronic lung disease such as chronic obstructive pulmonary disease (COPD) often have an unpredictable clinical course and a high symptom burden. Their prognosis is similar to that of patients with lung cancer. Aim and Methods: We retrospectively assessed end of life care in all patients who were admitted and subsequently died on a general respiratory ward in a central teaching hospital over a period of 11months (1st June 2010-1st May 2011). We compared our practice with guidelines set out in Living and Dying Well, a national action plan for palliative and end of life care in Scotland. Results: There were 66 deaths, data was obtained for 57 patients (86.4%). Patients with lung cancer had higher rates of recorded discussions regarding their prognosis in comparison to those with COPD (60%, n=9 vs. 8.3%, n=1 respectively). In addition, they had greater levels of in-patient palliative care involvement (50%, n= 7 vs. 0% respectively) and higher rates of recorded wishes end of life care destination (28.6%, n=4 vs. 8.3%, n=1 respectively). This is despite patients with lung cancer having a lower mean number of end of life clinical indicators (2.64 vs. 3.17 respectively) and a lower mean number of admissions in the 12months preceding death (1.67 vs. 4.08). Conclusions: Palliative care involvement and discussion of patients' end of life care wishes is poor in COPD. Timely and effective discussions regarding disease prognosis and patient wishes, including early consideration for initiating anticipatory care planning needs to be instituted.
Introduction: This study aims to ascertain attitudes of health care workers on end-of-life care (EOLC) issues and to highlight the disparity that exists in countries with different backgrounds. Methods: It is a cross-sectional questionnaire survey across heterogeneous health care providers in India, Chile, the United Kingdom, and the Netherlands using an indigenously prepared questionnaire considering regional variations, covering different areas of EOLC. Results: Of the 109 participants, 68 (62.4%) felt that cardiopulmonary resuscitation should be done selectively, 25 (22.9%) had come in contact with at least 1 patient who had asked them to hasten death, and 36 (33%) felt that training was insufficient to prepare them for skills in issues of EOLC. Conclusion: To avoid cumbersome through well-meant interventions, it is important that the caregiving team is aware of the patient’s own wishes with respect to EOLC issues.
Of the 21 Portuguese teams identified, 10 accepted to participate in the study. A total of 164 patients were included with a median of 15.5 per team (4-32). Of all the patients included, 60 (37%) were identified as inpatients in palliative care units; 59 (36%) by an intrahospital support team; 26 (16%) as outpatients; and 19 (12%) at home. The median age was 71 years (16-95). Fifty-one percent were females. The diagnosis was cancer in 151 (92%) patients. The most common cancer was colorectal in 22 (15%) patients, followed by gastric 17 (11%), head and neck 17 (11%), breast 15 (10%), and lung cancers 14 (9%). All patients were treated by doctors and nurses experienced in palliative care.
Fatigue is the problematic symptom identified by patients with cancer. However, fatigue has not been widely examined in caregivers of patients with cancer. In this study, 131 caregivers of patients diagnosed with advanced stage cancer and actively receiving radiotherapy reported experiencing the most difficulties with fatigue (mean 46.9; on a 0-100 scale, with a 10-point difference having clinical meaning) at baseline and at a 6-month follow-up (mean 48.3). This is in sharp contrast to other domains of quality of life and functioning being rated in the 60s, 70s and 80s by the caregivers of patients with cancer. Given the level of fatigue reported by the caregivers of patients with cancer, if confirmed by other investigators in larger and more diverse samples, interventions targeting caregiver fatigue should be explored.
Julia, a 31-year-old woman, is brain dead after having suffered a cardiac arrest. This article describes a hospital chaplain's journey with her family through the tragedy of letting her die. It addresses the power of pastoral presence and prayer in a situation of loss and grief and the importance of storytelling for everyone involved in Julia's end-of-life care.
Objective: To review the benefits of adapting the complex techniques of formal lymphedema therapy to the more generalized forms of edema often seen in the chronic disease and palliative care settings. Data Sources: Peer-reviewed literature and clinical practice. Conclusion: Lymphedema treatment modalities have much to offer beyond their well-characterized benefit in classical lymphedema. In modified forms, they may improve and lessen the burden of refractory edema originating from a diverse range of causes. Thoughtful planning and practice, however, are essential as an inadequate adaptation may result in unnecessary effort, injury for the patient, or an unsatisfactory outcome.
Objective: To investigate whether do not attempt resuscitation (DNAR) orders can be implemented in a standard nursing home in Japan, where routine DNAR orders are not yet common in many facilities including hospitals. Method: Ninety-eight residents in a 100-bed nursing home were evaluated. All of the eligible residents and/or their family members were asked whether they wanted to receive resuscitation, including mechanical ventilation. Result: The residents were 54 to 101 years of age (mean 83.3), with 27 males and 71 females. After administering the questionnaire, 92 (94%) patients did not want resuscitation and mechanical ventilation. Conclusion: In a nursing home, it was possible to obtain advance directives by which most residents/families rejected resuscitation and mechanical ventilation. This could avoid unnecessary and undesirable resuscitation procedures.
Aims: To describe the integration of massage therapy into a palliative care service and to examine the relationship between massage and symptoms in patients with advanced illnesses. Methods: Between April 1, 2009, and July 31, 2010, 153 patients received massage at the VA Ann Arbor Health Care System. Data on pain, anxiety, dyspnea, relaxation, and inner peace were collected pre and post massage. Diagnoses, chronic pain, and social support were also abstracted. Analysis of covariance was used to examine changes over time. Results: All short-term changes in symptoms showed improvement and all were statistically significant. Pain intensity decreased by 1.65 (0-10 scale, P < .001), anxiety decreased by 1.52 (0-10 scale, P < .001), patients’ sense of relaxation increased by 2.92 (0-10 scale, P < .001), and inner peace improved by 1.80 (0-10 scale, P < .001). Conclusion: Massage is a useful tool for improving symptom management and reducing suffering in palliative care patients.
Often thought of as a benign and self-limited condition, hiccups can become persistent or intractable, and thus be associated with substantial morbidity and distress. In such cases, an underlying etiology is often present, and may be overlooked. Debilitating hiccups can present a major challenge to optimal symptom management. Various causes of protracted hiccups have been identified including metabolic abnormalities, central nervous system pathology, malignancy, medications, and disorders attributed to cardiac, pulmonary and gastrointestinal etiologies. We present a case of intractable hiccups in a patient with an advanced hematological malignancy and review specific therapies for the management of persistent hiccups.
Aim: To develop a screening tool that was short, not time consuming but able to detect the patients’ main problems at admission. Methods: A list of 106 symptoms/problems derived from a review of the literature was created and shortened using a Delphi process. Results: Thirteen experts scored each item with a numeric rating scale of 0 to 10 for relevance. After 3 rounds, the list was shortened to 14 items: general question— what bothers you the most? symptoms/problems— pain, lack of appetite, vomiting, tiredness/fatigue, nausea, constipation, shortness of breath, depression, anxiety, difficulty sleeping; activity (dressing, washing, etc); support from family/friends; and well-being. Conclusion: The final tool is short and seems to include the relevant items that would make it useful for clinical practice.
Purpose: Poorly controlled pain is common in advanced cancer. The objective of this article was to synthesize the evidence on the effectiveness of pain-focused interventions in this population. Methods: We searched MEDLINE, CINAHL, PsycINFO, Cochrane, and DARE from 2000 through December 2011. We included prospective, controlled health care intervention studies in advanced cancer populations, focusing on pain. Results: Nineteen studies met the inclusion criteria; most focused on nurse-led patient-centered interventions. In all, 9 (47%) of the 19 studies found a significant effect on pain. The most common intervention type was patient/caregiver education, in 17 (89%) of 19 studies, 7 of which demonstrated a significant decrease in pain. Conclusions: We found moderate strength of evidence that pain in advanced cancer can be improved using health care interventions, particularly nurse-led patient-centered interventions.
Although much attention has been placed on appropriate symptom management at the end of life, little is known about the medications actually prescribed to people in hospice care. The purpose of this study was to determine the most commonly prescribed medications in a population of hospice patients. A retrospective review of a patient information database was conducted. The 6 most common drugs (acetaminophen, morphine, haloperidol, lorazepam, prochlorperazine, and atropine) were included in emergency kits provided to patients at admission. Opioid and nonopioid analgesics, anxiolytics, anticholinergics, and antipsychotics were the most commonly prescribed pharmacologic classes. This description of prescribing practices could be useful in creating more informed care plans, educating health care personnel, and anticipating the changing medication needs of patients as they enter hospice care.
Background: Initiating advance care planning (ACP) discussions in the home may prevent avoidable hospitalizations by elucidating goals of care. Area agencies on aging care managers (AAACMs) work in the home with high-risk consumers. Purpose: To determine which AAACM characteristics contribute to an increased frequency of ACP discussions. Method: Cross-sectional investigator-generated surveys administered to AAACMs at 3 AAAs in Ohio. Results: Of 289 AAACMs, 182 (63%) responded. The more experience and comfort AAACMs felt with ACP discussions, the more likely they were to initiate ACP discussions. Discussion: It may be necessary to build interactive educational experiences where, for example, AAACMs are asked to fill out their own advance directives and/or facilitate others in ACP discussions to improve experience and comfort with ACP discussions.
The aim of this study was to investigate the relationship between gastrointestinal symptoms, nutritional balance, and performance status in patients receiving palliative care for advanced cancers originating in different sites. We studied a total of 105 patients. Upper gastrointestinal symptoms, Eastern Cooperative Oncology Group Performance Status score (ECOG-PS), dietary intakes, anthropometric measures, and some serum proteins were determined. Unintentional weight loss, alterations in anthropometric measures, and highest number of symptoms were greater in patients with lung and stomach cancer. No differences were found in ECOG-PS according to cancer site. Patients with gastric or lung cancer have most evidence of protein-calorie malnutrition and a higher prevalence of upper gastrointestinal symptoms. The performance status is not affected by tumor site. Early nutritional support should be planned for all patients with cancer, especially for patients with gastric or lung cancer.
End-of-life decisions (ELDs) represent a controversial subject, with ethical dilemmas and empirical ambiguities that stand at the intersection of ethics and medicine. In a non-Western population, we examined individual differences in perceiving ELDs that end the life of a patient as acceptable and found that an attitude toward euthanasia (ATE) scale consists of 2 factors representing voluntary and nonvoluntary euthanasia. Also, acceptance of ELDs that end the life of a patient negatively correlated with life satisfaction, honesty–humility, conscientiousness, and intrinsic and extrinsic personal motivation toward religion. These findings provided additional construct validity of the ATE scale.
Buprenorphine is a frequently used opioid in the treatment of neuropathic pain component that is often present in patients with cancer. A case of a 41-year-old patient was depicted whose pain syndrome was associated with the chondrosarcoma growth originating from the sacral bone and numerous surgical interventions and radiotherapy. Improvement in analgesia and good toleration of therapy were observed after switching from transdermal fentanyl to transdermal buprenorphine while maintaining treatment with antidepressants and anticonvulsants. This case report indicates a possibility of a safe switch of transdermal opioids at home, which may provide benefits in terms of analgesia and adverse effects and in consequence have positive impact on the patients’ quality of life. This is also accompanied by constant psychological, social, and spiritual support provided to the patient and family.
Palliative care physicians are accustomed to using transdermal fentanyl patch for cancer pain control but not so familiar with its intravenous administration. Historically, fentanyl has been used to treat breakthrough pain because it is a very potent analgesic with a rapid onset and short duration of action. Although several formulations of fentanyl have been recently developed for breakthrough cancer pain, these are unavailable or too expensive in some countries. Also, all opioids can induce tolerance potentially and different opioids cause significantly different degrees of tolerance. Therefore, sequential opioid trials may be a reasonable approach in patients with poor analgesic effect after dose escalation. Here, we present 2 morphine-tolerant patients with cancer in whom the intravenous fentanyl was effectively used for their refractory breakthrough pain.
Delirium is a common syndrome present at the end of life and causes significant distress for patients and families. Sleep disruption is a common precipitating factor for delirium and restoration of sleep may be instrumental in attenuating symptoms. In this cases series, we present three patients who were unresponsive to escalating doses of standard delirium medications, but whose delirium resolved once improved sleep was achieved using Pentobarbital. In a fourth patient, delirium was successfully treated where neuroleptics were contraindicated. Pentobarbital has been shown to reduce the time to sleep onset, decrease the number of body movements during sleep and spontaneous awakenings and increase the total sleep time. Pentobarbital may provide an additional treatment option for patients whose delirium is refractory to standard management approaches.
The present study examined the support needs for urban and rural family caregivers of a palliative family member using a cross-sectional telephone survey in northeastern Ontario, Canada (n = 140; 70 urban, 70 rural). Support needs identified as most important by both the groups were informational. Rural caregivers reported greater unmet needs in tangible support (P =.01). No differences were observed between the groups for emotional or informational support needs (P = .25 and P = .35, respectively). Rural and urban caregivers perceived care for care recipients as accessible (mean accessibility score 1.9, standard deviation [SD] = 0.09 and 1.7, SD=0.7, respectively, P = .20); the majority indicated that when needed, services were easily and quickly obtained. Although there are similarities in the formal care experiences, rural caregivers experience greater unmet needs in receiving support for instrumental activities.
Pain is common as a presenting complaint to outpatient and emergency departments for children, yet pain management represents one of the children’s largest unmet needs. A child may present with acute pain for an intermittent issue or may have acute or chronic pain in the setting of chronic illness. The mainstay of treatment for pain uses a stepwise approach for pain management, such as set up by the World Health Organization. For children with life-limiting illnesses, the Institute of Medicine guidelines recommends referral upon diagnosis for palliative care, meaning that the child receives comprehensive services that include pain control in coordination with curative therapies; yet barriers remain. From the provider perspective, pain can be better addressed through a careful assessment of one’s own knowledge, skills, and attitudes. The key components of pain management in children are multimodal, regardless of the cause of the pain.
Palliative sedation (PS) is a treatment option in case of refractory symptoms at the end of life. The emotional impact on nurses and doctors has been widely studied. We explore the experience of family members during a PS procedure. Method: An anonymous questionnaire was sent to the closest family members (n = 17) of patients who died while receiving palliative sedation. Results: The response rate was 59% (10 of 17). Nine relatives were sufficiently informed about PS. In all, 70% evaluated the chosen moment for initiation of PS as adequate. All the relatives noticed a significant improvement in the refractory symptom with a mean reduction in the estimated suffering of 6.25 points on a visual analog scale. Conclusions: Palliative sedation should be performed in the best possible way for the patient and his family in order to efficiently reduce a refractory symptom.
Diencephalic storms or paroxysmal sympathetic storms are characterized by episodic hyperhidrosis, hypertension, tachypnea, tachycardia, and abnormal posturing. These have been reported to occur in patients with hydrocephalus, intracranial tumors, and hypoxic, ischemic, or traumatic brain injury. They can be easily misdiagnosed as seizures, uncontrolled pheochromocytoma, drug withdrawal, thyroid storm, hypertensive crises, and sepsis or anxiety attacks. The most effective treatment to control these symptoms is yet to be identified. We present 2 individuals exhibiting these sympathetic surges; one whose symptoms were controlled with phenobarbital and the other with clonidine and oxycodone. Palliative medicine physicians should be made aware of this unusual complication.
Rationale: Studies identify common factors important for a "good death." However, it is important for clinicians to individualize end-of-life care by eliciting patients’ preferences. We sought to determine preferences for death and dying among veterans with chronic obstructive pulmonary disease (COPD) by performing a cross-sectional study. Participants (n = 376) completed a preferences about death and dying questionnaire. Results: Common themes ranked as most important by veterans include health care costs (86.6%) and avoiding strain on loved ones (78.8%). Unique items include being unafraid of dying (67.1%) and having discussed your treatment preferences with your clinician (59.3%). Conclusion: Preferences for death and dying are consistent among individuals with life-limiting illness, thus should be incorporated as core components in all end-of-life care planning. We identified unique preferences important to patients with COPD. This study suggests that clinicians need to engage in end-of-life discussions to learn about individual preferences to improve the patients’ dying experience.
This study aimed to compare the characteristics of patients with hematologic malignancies and solid cancers who received palliative care. A total of 124 patients with hematologic malignancy and 3032 patients with solid cancer, who received palliative care consultation services between 2006 and 2010 in a medical center in Taiwan, were retrospectively analyzed. Higher prevalence of oral stomatitis, diarrhea, and hematologic symptoms including infection, fever, severe anemia, and bleeding, and lower prevalence of constipation, abdominal distension, and pain were observed in patients with hematologic malignancies compared to that in patients with solid cancer. The interval from hospital admission to palliative care referral was longer for patients with hematologic malignancy than that for patients with solid cancer. Hematologists should refer patients earlier, and palliative care specialists should understand the specific needs of patients with hematologic malignancy.
Background: Malignant bowel obstruction (MBO) is common in patients with advanced cancer. Aim: To perform a phase II study to assess the feasibility of conducting a phase III trial investigating the therapeutic value of gastrografin in MBO. Methods: Randomized double-blinded placebo-controlled feasibility study. Participants received 100 mL of either gastrografin or placebo. Results: Over 8 months, 57 patients were screened and 9 enrolled (15.8% recruitment rate). Of the 9 enrolled, 4 received gastrografin (with 2 completing assessment) and 5 received placebo (with 4 completing assessment). Conclusions: It is not feasible to conduct a phase III trial using the same study protocol. This study validates the use of the phase II feasibility study to assess protocol viability in a palliative population prior to embarking on a larger trial.
Hospice volunteers play an essential role in the primary care network for end of life. The purpose of this review was to examine the evidence on hospice volunteers published between 2002 and July 2012. An electronic search of PubMed, CINAHL and PsychINFO using controlled vocabulary, and a reference scan, yielded 54 studies focusing on hospice volunteers. Studies were primarily descriptive using quantitative, qualitative and mixed methods. Findings from studies were grouped thematically into descriptions of the work of hospice volunteers; recruitment, preparation and retention of hospice volunteers; and perspectives and outcomes of the volunteer role. A substantial body of evidence exists describing the roles, stresses and rewards of hospice volunteering. Less is known about how to adequately recruit, prepare and retain volunteers. A small but intriguing body of evidence exists around volunteers' contributions to family satisfaction and patient longevity. Although the evidence around hospice volunteers continues to grow, there is an urgent need for further research. Findings indicate that volunteers make important contributions to high quality end of life care. However, more focused research attention is required to better understand how to maximize this contribution while providing better support for volunteers.
The prediction of in-hospital mortality may help in improving end-of-life care for patients dying of cancer. The Chuang Prognostic Score (CPS) was developed to predict survival of terminally ill patients with cancer. The CPS was assessed in 61 hospitalized adult patients with advanced cancer. Using a CPS cutoff point of ≥6, in-hospital mortality was predicted with 71% positive predictive value, 91% negative predictive value, 75% sensitivity, 89% specificity, and 85% overall accuracy. The patients were divided according to the CPS score into 3 groups (Group 1: CPS < 3.5, Group 2: CPS ≥ 3.5-<6, and Group 3: CPS ≥ 6) with a median survival of not reached, 118 days, and 16 days, respectively (P < .001). The CPS may be useful in predicting in-hospital mortality of hospitalized patients with advanced cancer.
To optimally manage patient care, knowledge of the prevalence of signs of impending death and common symptoms in the last days is needed. Two reviewers independently conducted searches of PubMed, CINAHL, PsychINFO and the Web of Knowledge from January, 1996 to May, 2012. No limits to publication language or patient diagnosis were imposed. Peer reviewed studies of adults that included contemporaneous documentation of signs and symptoms were included. Articles were excluded if they assessed symptoms by proxy or did not provide information on prevalence. Reviewers independently extracted data. Twelve articles, representing 2416 patients, in multiple settings were analyzed. Of the 43 unique symptoms, those with the highest prevalence were: dyspnea (56.7%), pain (52.4%), respiratory secretions/death rattle (51.4%), and confusion (50.1%). Overall prevalence may be useful in anticipating symptoms in the final days and in preparing families for signs of impending death.
Radionuclides have been long used for the palliation of skeletal-related metastatic pain. They are almost invariably used as the last resource for pain palliation. Their use as single agents with dose escalations, in combination with biphosphonates or chemotherapy is well known in the peer-reviewed literature; however, little is known about the combination between different agents. In our study, we used consecutive administration of 2 different radionuclides such as 186Re-1,1-hydroxyethylidenediphosphonate (186Re-HEDP) and 89Strontium Chloride (89Sr-Cl) separated by adequate period of time to allow bone marrow recovery in patients with high chance of bone pain relapse and compared it with 89Sr-Cl and chemotherapy group and 186Re-HEDP with bisphosphonates. The end result was that treatment with consecutive radionuclides was much more effective and safe than the other 2 groups.
Given the increasing popularity of a hospice inpatient/residential facility (HIRF) among hospice patients and their family members, examining who uses HIRFs has been of increasing importance. Using the 2007 National Home and Hospice Care Survey (NHHCS), we found that about 14% of the hospice patients received care in an HIRF in 2007. Characteristics of patients associated with HIRF use largely match the industry norm for a general inpatient level of care and include having no caregiver or having an incapable caregiver; having imminent death; and being directly admitted to a hospice after discharge from a hospital. Given a recent stricter enforcement of reimbursement rules, however, we call for close monitoring of any change in the number of HIRF beds—particularly in rural and low-income urban areas.
Morphine and oxycodone are widely used in the therapy for cancer pain. Although some previous studies have reported that morphine induces immunosuppression and oxycodone does not, whether this is true for human infections is unclear. We performed a retrospective study on the correlation between the administration of morphine or oxycodone and the development of infections in patients with cancer pain. This study was undertaken in 841 inpatients receiving only 1 opioid continuously for more than 10 days. Development of infections was based on (1) antibiotic administration and (2) diagnosis of infections, positive microbial culture test, or increase in white blood cells or C-reactive protein. Liver, kidney, and hematological cancer, antineoplastic drugs, radiotherapy, steroid, immunosuppressive agents, granulocyte colony-stimulating factor, and thyroid inhibitors were defined as the exclusion criteria in consideration of influence on immune system or metabolism and excretion of morphine and oxycodone. A total of 60 morphine and 74 oxycodone cases were included, which resulted in 18 and 10 infection cases. Significantly more patients treated with morphine developed infections than those patients treated with oxycodone (odds ratio = 3.60, 95% confidence interval = 1.40-9.26). No significant differences were seen in the other variables analyzed. Although perhaps some confounding variables were included because this was an observational rather than randomized study, these results suggested that morphine’s immunosuppressive effect may contribute to the development of infections in patients with cancer pain.
A new once-a-day fentanyl citrate transdermal patch was developed in Japan. We retrospectively investigated analgesic and adverse effects of this drug in 24 patients with lung cancer. All patients were started on this patch by switching from an oral opioid. The mean pain score before switching was 2.45 (0-5); 48 hours after switching, 15 of the 24 patients showed a decreased pain score and the mean score (2.00) was significantly lower than that before switching. Of the 16 patients who had adverse effects of oral opioids, 7 patients showed improvement in their symptoms after switching. Two patients showed adverse effects of the drug but their symptoms were mild, and no patient required dose decrease. This new transdermal patch could be a useful treatment option for cancer pain.
Quality standards no longer allow physicians to delay discussing goals of care and resuscitation. We propose 2 novel strategies for discussing goals and resuscitation on admission. The first, SPAM (determine Surrogate decision maker, determine resuscitation Preferences, Assume full care, and advise them to expect More discussion especially with clinical changes), helps clinicians discover patient preferences and decision maker during routine admissions. The second, UFO-UFO (Understand what they know, Fill in knowledge gaps, ask about desired Outcomes, Understand their reasoning, discuss the spectrum Feasible Outcomes), helps patients with poor or uncertain prognosis or family–team conflict. Using a challenging case example, this article illustrates how SPAM and UFO-UFO can help clinicians have patient-centered resuscitation and goals of care discussions at the beginning of care.
The purpose of this study was to determine the incidence of deathbed communications (DBCs) during the 30 days before death and their impact on the dying process. A total of 60 hospice chart audits and 75 survey responses by hospice nurses across the United States were analyzed. Chart audits revealed 5 (8.33%) of the 60 included descriptions of DBCs. The survey of 75 hospice nurses identified 363 incidences of DBCs, with an average of 4.8 patient occurrences per nurse per 30 days. In all, 89% of the hospice nurses reported patients who experienced a DBC had a peaceful and calm death, with only 40.5% reporting a peaceful and calm death without the DBC. These DBCs have a positive impact on the dying process but are underreported in patient records and under described in textbooks.
This case report describes a patient who had atropine ophthalmic drops prescribed and dispensed by hospice to be administered sublingually as needed for control of secretions at the end of life. However, even as she stabilized and discharged from hospice, these remained on her medication list. At a subsequent hospitalization, this order was misinterpreted and the drops were ordered to be administered in both the eyes 3 times a day while in the hospital and were included in her discharge medication list. The patient experienced severe blurring of vision until the error was corrected. This case highlights the potential risks of the common practice in hospice of using alternate routes of administration for medications designed for another purpose.
Background: Euthanasia requests have increased as the number of debilitated patients rises in both developed and developing countries such as India due to medical, psychosocial–emotional, socioenvironmental, and existential issues amid fears of potential misuse. World’s position: Albania, Colombia, the Netherlands, and Switzerland permit euthanasia conditionally. Australia’s legalization of euthanasia has been withdrawn. The United States permits withdrawal of life support. Mexico and Norway permit active euthanasia. India’s position: Following the Aruna Shanbaug case the Supreme Court granted legal sanction to passive, but not active, euthanasia that is valid till the Parliament legislates on euthanasia. Handling euthanasia requests: Acknowledging the complexity of the problem; individualizing the palliative approach; and accepting the ‘There is no alternative’ or ‘There is no answer’ (TINA) factor.
Patients with congestive heart failure (CHF) account for up to 12% of the hospice population and often experience significant symptoms related to volume overload. Diuretic therapy is the cornerstone of treatment but administration (PO) often becomes ineffective and (IV, IM) routes cause discomfort or may not be feasible to ameliorate symptoms. Subcutaneous dosing of furosemide has been explored as a potential alternative for management of CHF symptoms. We report 2 cases of CHF resistant to oral diuretic and examine the clinical utility of subcutaneous furosemide in an inpatient palliative care unit and a home hospice setting. Our case series supports the use of subcutaneous therapy as a potential alternative in palliative care and hospice patients.
Factorial surveys were used to examine community-based long-term care providers' judgments about consumers' need for advance care planning (ACP) and comfort levels in discussing ACP. Providers (448 registered nurses and social workers) judged vignettes based on hypothetical consumers. Hierarchical linear models indicated providers judged consumers who were older, had end-stage diagnoses, multiple emergency department visits, and uninvolved caregivers as most in need of ACP. These variables explained 10% of the variance in judgments. Providers' beliefs about ACP predicted judgments of need for ACP and comfort level in discussing ACP. Provider characteristics explained more variance in comfort levels (44%) than in judgments of need (20%). This study demonstrates the need for tailored educational programs to increase comfort levels and address ACP misconceptions.
Purpose: To review physician’s attitudes as well as the variables that may impact on physicians’ attitude toward advance directives (ADs). Method: Literature review of 17 published articles, covering the period 1989 to 2011. Findings: Physicians overall have a positive attitude toward patients’ AD. However, other factors affect this "general positive attitude." These factors influence the attitude–behavior relationship of physicians, and hence their actual practice in relation to patients’ AD. Conclusion: The findings from this review are of importance in explaining the differences in the attitude of physicians toward AD and their compliance. This raises the issue of consideration of other ethical paradigms/theories in the clinical context other than the framework of "principlism-"based autonomy, on which AD leans on. This is important in light of the pluralism of ethical theories.
The aim of this retrospective study is to investigate the immediate and long-term outcomes following the insertion of covered and uncovered self-expandable metallic stent (SEMS) for the management of malignant tracheobronchial disease. A total of 49 patients (27 male, mean age 60.9 ± 15 years) underwent 77 SEMS insertions (57 uncovered). The procedure was performed in theater using combined bronchoscopic and fluoroscopic guidance. The study’s primary end points included technical success (97.9%), clinical success (91.8%), and symptom recurrence (14.2%). The mean follow-up time was 5.5 ± 5.9 months. We concluded that tracheobronchial SEMSs provide safe and effective minimally invasive long-term management of patients with symptomatic malignant airway disease.
Since 1995, studies have shown mixed results in the efficacy of advance directives. With new technologies, advance care planning is being transformed through video, computer programs, electronic registries, and electronic health records. In Nevada and Texas, Web sites and mobile applications provide education, guided interviews, storage, and retrieval in multiple languages. Drawing on 371 completed evaluations from both states, the authors show that increasingly people are finding advance directive information on the Internet, completing directives to be prepared and to have control, and that the attraction of these Web sites is their ease of use. Users report where they keep their documents, with whom they have end-of-life conversations, and what medical care requests they make.
In total, 120 British female hospice volunteers completed the NEO five-factor inventory (NEO-FFI) of Costa Jr and McCrae.1 The NEO-FFI measures the so-called big 5 personality traits of neuroticism, extraversion, openness, agreeableness, and conscientiousness. Compared to both American NEO-FFI norms for adult females1 and emerging British NEO-FFI norms for adult females,2 the hospice volunteers scored significantly lower, on average, in neuroticism and significantly higher, on average, in agreeableness and conscientiousness. No significant differences were found on any of the 5 traits between the British female hospice volunteers’ scores and the NEO-FFI scores previously collected from a sample of Canadian female hospice palliative care volunteers.3 Implications for the recruitment of British hospice volunteers are discussed.
Although paclitaxel is a commonly used anticancer drug, peripheral neuropathy may develop as a side effect. Worsening of the symptoms with time may cause patients who receive paclitaxel to give up their chemotherapy. Duloxetine, a serotonin- and norepinephrine-reuptake inhibitor, has been used to treat peripheral neuropathic pain. We report the case of a 68-year-old man with gastric cancer, who underwent gastrectomy and then received 8 cycles of chemotherapy involving weekly administrations of paclitaxel. Under this paclitaxel treatment, he complained of severe peripheral neuropathy, leading to a diminished quality of life. Following treatment with a combination of duloxetine and pregabalin, a remission of his symptoms was achieved. Duloxetine plus pregabalin therapy may be useful for the peripheral neuropathy induced by paclitaxel.
Objective: To examine the current status of advance directives (ADs) and do-not-resuscitate (DNR) orders among patients with terminal cancer in palliative care units (PCUs) in Japan. Methods: We conducted a retrospective chart review of the last 3 consecutive patients who died in 203 PCUs before November 30, 2010. Results: The percentages of patients who had ADs during the final hospitalization for cardiopulmonary resuscitation, mechanical ventilation, intravenous fluid administration, tube feeding, antibiotic administration, and who had appointed a health care proxy were 47%, 46%, 42%, 19%, 18%, and 48%, respectively. Seventy-six percent of the patients had a DNR order. Of the patients with decision-making capacity, 68% were involved in the DNR decision. Conclusions: These findings may reflect positive changes in patients’ attitudes toward ADs, in Japan.
In all, 162 British hospice volunteers completed the Inventory of Motivations for Hospice Palliative Care Volunteerism (IMHPCV) of Claxton-Oldfield, Wasylkiw, Mark, and Claxton-Oldfield.1 The IMHPCV taps into 5 different categories of motives for becoming a hospice palliative care volunteer: altruism, civic responsibility, leisure, self-promotion, and personal gain. Altruistic motives were the most influential reasons for choosing to join hospice; personal gain motives were the least influential reasons for becoming a hospice volunteer. Altruistic motives were found to be a significant predictor of volunteers’ length of service to the hospice. Compared to previously collected data from a sample of Canadian hospice palliative care volunteers,1 the current study’s sample of British hospice volunteers scored significantly different on 2 of the 5 categories of motives on the IMHPCV.
The Medicare Payment Advisory Committee (MedPAC) recommended that the per diem reimbursement for the Medicare Hospice Benefit change to a U-shaped scheme reflecting spending based on nursing visit frequency. This study investigated the change in drug cost over patients’ length of stay (LOS) as current drug cost trends are unknown and were not evaluated in the MedPAC proposed reimbursement scheme. An analysis of patient utilizers of a national pharmacy claims database from 2007 to 2010 was completed to determine the trend in average daily pharmaceutical cost per utilizer (PCPU) over the patient’s LOS. The average daily PCPU for 144 119 patients demonstrated a U-shaped curve. Indexed values in the first and last periods were significantly higher than in all other periods overall and by diagnosis (P < .001). Although indexed medication costs showed a U-shaped curve, it is imperative that hospice reimbursement be adequately evaluated for all medication costs including variations within the diagnosis mix. Payer sources and hospices must work together to determine adequate reimbursement models that will provide patients with effective and efficient high-quality care through the end of life.
This study aimed to compare multiaspect characteristics in cancer and noncancer patients who received palliative care. Totally, 226 patients with cancer and 115 noncancer patients received palliative care consultation service in Taiwan from September 2007 through December 2009 were retrospectively analyzed. Noncancer patients were older (81 vs 67 years, P < .001), more likely to be enrolled from an intensive care unit (51% vs 5%, P < .001), and waited longer to be referred for admission to a palliative care (8 vs 3 days, P < .001) than patients with cancer. Cancer and noncancer patients presented as polysymptomatics in both physical and psychosocial symptoms at the end of life. Such physical and psychosocial characteristics should be taken into account in providing appropriate end-of-life care in the same way as it is for the patients with cancer.
Introduction: To develop a shorter and less burdensome cancer-related fatigue (CRF) questionnaire, the Four-Item Fatigue Scale (FIFS) was tested for validity against the Brief Fatigue Index (BFI). Methods: On day 1, patients with cancer completed the BFI and FIFS in a random order and the reverse on day 7. Sixty-five patients were needed for an 80% power and a Spearman correlation of .7 or greater. The FIFS was compared with the BFI in fatigue severity and changes in fatigue over time. Bonferroni corrections were made for multiple comparisons with International Classification of Diseases, Tenth Revision (ICD-10) fatigue criteria. Results: Seventy-nine patients were enrolled, 65 patients completed both surveys. Spearman correlation between FIFS and BFI for day 1 was 0.69 (95% confidence interval [CI] 0.50-0.87) and 0.73 (95% CI 0.56-0.90) 1 week later. Fatigue severity did not predict survival with either questionnaire. Brief Fatigue Index severity correlated with ICD-10 items 1, 3, 7, and 10B. Regression analysis showed that on day 7 BFI correlated with ICD-10 items 1, 7, and 10. When the model was adjusted for day 1, only the ICD-10 item 5 correlated well in BFI over 1 week. The ICD-10 items 7 and 10 significantly correlated with day 1 FIFS fatigue changes over 7 days after adjustment for FIFS baseline score. Conclusions: Four-Item Fatigue Scale has concurrent validity for fatigue using the BFI. The FIFS and BFI correlated modestly over time. Certain ICD-10 items correlated with CRF severity depending on the questionnaire.
Objectives: The first and only palliative care (PC) unit in Qatar was established in 2008 to serve adult patients with cancer. As PC was only recently introduced to oncology practice in Qatar and the region, raising awareness among physicians is crucial. This survey study is designed to outline the level of awareness and knowledge of oncologists in Qatar toward PC. Methods: In this cross-sectional survey study, copies of a self-constructed questionnaire were distributed to 49 physicians at the National Center for Cancer Care and Research in Qatar during January 2012 and collected for data analysis. Results: The physician response rate was 100%. Less than half of the responders (36.7%) had official training in PC, but the majority (89.8%) showed interest in the field. Only 57.8% of the physicians reported self-competence in providing good PC to the dying patient. On the other hand, up to 69.4% are aware of the guidelines for pain relief and 58.7% apply them in their clinical practice. The concept of PC hospice was familiar to 77.1% of participants. On one hand, 85.7% of the physicians advocated that every medical center should have PC service, while up to 70.8% preferred that patients with short survival expectancy die in the community, rather than in a hospital setting. Conclusions: There is relatively good awareness and knowledge among health care providers specialized in cancer treatment in our hospital, despite the lack of formal training. Further training and informative sessions are required to raise awareness among oncologists and encourage utilization of PC services and thus optimize patient accessibility to PC.
The stylized fact is that while private insurance has tended to innovate on the benefit design side of the insurance contract, Medicare has lead innovation on the payment side. Traditional or Fee-For-Service Medicare has produced many innovations in the payment for health care services, such as Prospective Payment for hospitals, Diagnostic-Related Groups to categorize care, and the Resource-Based Relative Value System used by the program to pay physicians, while private insurance has produced a series of benefit design innovations. This story misses one important example of Medicare benefit innovation: the creation of the Medicare hospice benefit. A key question is whether Medicare can again lead a system-wide benefit design effort to improve upon current hospice and palliative care policy.
A case of acute lung injury (ALI) progressing to acute respiratory distress syndrome (ARDS) requiring tracheal intubation and mechanical ventilation (ETMV) is presented. The palliative medicine service was asked to address concerns expressed by the patient's spouse reflecting uncertainty regarding outcome expectations. Acknowledging and confronting the uncertainties of a critical illness is an essential component of patient-centered communication. Addressing and managing uncertainty for the case scenario requires consideration of both short- and long-term outcomes including mortality, ventilator independence, and adverse effects on quality of life for survivors. In this paper, ALI/ARDS requiring ETMV in the ICU was used as a focal point for preparing a prognostic assessment incorporating these issues. This assessment was based on a review of recently published literature regarding mortality and ventilator independence of survivors for adult patients receiving ETMV for ALI/ARDS in the ICU. In the studies reviewed, long-term survival reported at 60 days to 1 year was 50-73% with greater than 84% of the survivors in each study breathing independently. Selected articles discussing outcomes other than mortality or recovery of respiratory function, particularly quality of life implications for ALI/ARDS survivors, were also reviewed. A case of of ALI/ARDS requiring ETMV in the ICU is used to illustrate the situation of an incapacitated critically ill patient where the outcome is uncertain. Patient-centered communication should acknowledge and address this uncertainty. Managing uncertainty consists of effectively expressing a carefully formulated prognostic assessment and using sound communication principles to alleviate the distress associated with the uncertain outcome probabilities.
Gynecologic malignancies affect more than 83 000 women in the United States, each year. Because the disease involves the pelvis, many patients have side effects distal to this area in their lower extremities. The differential diagnosis of leg pain can be divided into vascular, neurologic, and musculoskeletal causes. In this review article, we address numerous etiologies of leg pain, reviewing the prevalence of disease, physical examination findings, diagnostic as well as treatment modalities.
Siblings of patients that have lengthy stays in the neonatal intensive care unit (NICU) may be affected emotionally by their brother’s or sister’s condition, separation, or even death. In an effort to assess the effect of perinatal loss on siblings a student-led inquiry was designed and tested. A scripted interview was composed to determine whether or not children were effectively processing the loss of their sibling. While a single case is reported, the methodology proved useful and opens the door to further consideration of providing sibling-oriented grief and bereavement services in the NICU.
Aims and Objectives: Sleep disorders are frequent in patients with advanced cancer receiving palliative care. The objective of this study was to demonstrate whether relaxation therapy can improve their satisfaction with sleep. Background: Few studies have investigated the effectiveness of relaxation in patients hospitalized with an advanced chronic disease. Design: Prospective randomized study with an immediate intervention group (IIG; relaxation days 3-6) and a delayed intervention group (DIG; relaxation days 6-9). Methods: The main measure was the overall satisfaction of sleep measured on a Numerical Rating Scale of Satisfaction of Sleep (NRSSS) between 0 and 10. Results: Totally 18 (IIG: 9; DIG: 9) patients were included in this study (mean age 66 ± 10.7). The NRSSS improved in both the groups (almost statistically significant) between the day of inclusion and day 2. Because of the dropout of the patients during the last days of the study, we analyzed the improvement in sleep satisfaction only between day 2 and 5. The NRSSS D5 for the immediate and delayed groups were 4.0 ± 23 and 3.8 ± 2.3, respectively. There was no significant improvement in both the groups. Conclusion: The results demonstrated the difficulty to include patients with advanced cancer in a randomized study with a DIG. We were not able to demonstrate the effectiveness of relaxation therapy on sleep satisfaction. Relevance to Clinical Practice: Techniques that can be easily used to improve sleep in patients with an advanced cancer should be developed and used already early in the disease.
Cough is one of the most common symptoms prompting patients to be seen by health care providers in the United States. Persistent cough can disrupt daily activities such as conversation, eating, breathing, and sleeping, and it can become extremely debilitating both physically and mentally. Pharmacological treatments include dextramethorphan, opioid cough suppressants, benzonatate, inhaled ipratropium, and guaifenesin. Successful cough suppression has also been demonstrated in several studies with the use of nebulized lidocaine. Nebulized lidocaine also appears to be well tolerated by patients with minimal side effects including dysphonia, oropharyngeal numbness, and bitter taste. Studies conducted thus far have been small, so larger randomized control trials comparing nebulized lidocaine to placebo need to be conducted in the future.
Fear of death and the stigma associated with the terminal events of illness prevents us from dying well. Lack of recognition of palliative care as a speciality, in many countries, leads us to die a pathetic death in ICU rather than dying at home with near and dear ones around. Its time to break the taboo of death and to start talking about this terminal sequence (good death) of good living.
Objective: To determine whether hospice enrollment at the time of a terminal admission alters the length of stay (LOS) or costs compared with patients not enrolled in hospice. Methods: Retrospective chart review of all nontraumatic inpatient deaths of patients with a previous admission in the preceding 12 months at an academic hospital. Results: 209 patients had a nontraumatic death and an admission in the year prior to the terminal admission. Patients enrolled in hospice had a shorter LOS (P = .02) and lower cost (P < .0001) than patients not enrolled at the time of their terminal admission. Conclusions: Enrollment in hospice during a terminal admission decreased cost and LOS. Hospice may be a way to provide more cost-effective, appropriate care to dying patients.
A qualitative study was conducted with semi-structured interviews to explore the experiences of suffering in 20 adult palliative care inpatients of University Malaya Medical Centre. The results were thematically analyzed. Ten basic themes were generated (1) loss and change -> differential suffering, (2) care dependence -> dependent suffering, (3) family stress -> empathic suffering, (4) disease and dying -> terminal suffering, (5) health care staff encounters -> interactional suffering, (6) hospital environment -> environmental suffering, (7) physical symptoms -> sensory suffering, (8) emotional reactions -> emotional suffering, (9) cognitive reactions -> cognitive suffering, and (10) spiritual reactions -> spiritual suffering. An existential–experiential model of suffering was conceptualized from the analysis. This model may inform the development of interventions in the prevention and management of suffering.
Objectives: To characterize health-related quality of life (HRQoL) in medical cannabis patients. Methods: Short Form 36 (SF-36) Physical Health Component Score and Mental Health Component Score (MCS) surveys as well as CDC (Centers for Disease Control) HRQoL-14 surveys were completed by 37 qualified patients. Results: Mean SF-36 PCS and MCS, normalized at 50, were 37.4 and 44.2, respectively. Eighty percent of participants reported activity/functional limitations secondary to impairments or health problems. Patients reported using medical cannabis to treat a wide array of symptoms across multiple body systems with relief ratings consistently in the 7-10/10 range. Conclusion: The HRQoL results in this sample of medical cannabis-using patients are comparable with published norms in other chronically ill populations. Data presented provide insight into medical cannabis-using patients’ self-rated health, HRQoL, disease incidences, and cannabis-related symptom relief.
Aims: This study attempts to explore how high treatment costs can result in people foregoing necessary treatment. Methods: Health care professionals (HCPs) were invited to complete a questionnaire survey, in which they were requested to imagine that they had locally recurrent head and neck cancers. They were then asked to choose a treatment in each of the 3 scenarios, which differed only in the cost of treatment. Results: Majority would choose the cheapest treatment option if treatment costs mirrored that in real life. But majority would opt for the treatment that gave the greatest median survival, if cost was not an issue. Conclusion: High cost of treatment can be a strong deterrent to patients who need and can benefit from those treatments.
Objective: The aim of this study was to investigate the availability and utilization of specialized palliative care services among patients with cancer in Japan. Methods: We conducted a nationwide cross-sectional survey of 828 institutions predicted to provide specialized palliative care services. Results: Responses were received from 751 institutions (response rate, 91%); of these, 541 had specialized palliative care services. Adding the census data of palliative care units, the total estimated number of institutions with specialized palliative care services was 659. Of all the patients with cancer who died in the period from April 2009 to May 2010 in Japan, the estimated proportion who utilized specialized palliative care services was 24%. Conclusions: Usage of specialized palliative care services in Japan have increased explosively in the past decade.
Spinal epidural lipomatosis (SEL) is the abnormal accumulation of normal fat within the spinal canal. It is more frequent in those patients receiving chronic glucocorticoid therapy or in cases of endogenous hypercortisolism states. We report a case of SEL in a patient with metastatic prostate cancer with history of steroid treatment as part of his chemotherapy regimen, presenting with clinical manifestations of partial cord compression. Magnetic resonance imaging images of the lumbar spine revealed the presence of epidural tumor suspicious for metastatic disease. Operative findings were consistent with epidural lipomatosis. Spinal epidural lipomatosis is a rare condition that needs to be included in the differential diagnosis of patients with risk factors, presenting with symptomatic cord compression.
The objective of this endeavor was to ascertain the current status of end-of-life and palliative care within the curriculum of US pharmacy schools and compare to a similar 1986 study. Additionally, responses to recent professional guidelines for pharmacy schools regarding end-of-life issues can be addressed. A fixed-choice survey was mailed to the 125 US pharmacy schools with a 49% response rate. Results revealed that the lecture format of teaching on end-of-life issues continues to be used today with an increase in offerings and greater participation by students than in 1986. Recently established guidelines and standards regarding end-of-life issues for pharmacy schools are being addressed, thus today’s pharmacists should be better prepared to relate to patients with terminal illnesses and their families than in 1986.
An indubitable aspect of laboring in the realm of hospice care is the "everydayness" of human loss or the stark encounter of death in the human experience. This can pose as opportunity to adopt each day in a particular manner. As such, the focus of my reflection is on transposing certain dynamics of a (funeral) wake to broader professional and personal socioexistential processes.