Despite most expected deaths occurring in hospital, optimal end-of-life care is not available for all in this setting.
To gain a richer and deeper understanding of elements of end-of-life care that consumers consider most important within the hospital setting.
A meta-synthesis.
A systematic search of Academic Search Complete, AMED, CINAHL, MEDLINE, EMBASE, PsycINFO, PubMed, Google, Google Scholar and CareSearch for qualitative studies published between 1990 and April 2015 reporting statements by consumers regarding important elements of end-of-life hospital care. Study quality was appraised by two independent researchers using an established checklist. A three-stage synthesis approach focusing on consumer quotes, rather than primary author themes, was adopted for this review.
Of 1922 articles, 16 met the inclusion criteria providing patient and family data for analysis. Synthesis yielded 7 patient and 10 family themes including 6 common themes: (1) expert care, (2) effective communication and shared decision-making, (3) respectful and compassionate care, (4) adequate environment for care, (5) family involvement and (6) financial affairs. Maintenance of sense of self was the additional patient theme, while the four additional family themes were as follows: (1) maintenance of patient safety, (2) preparation for death, (3) care extending to the family after patient death and (4) enabling patient choice at the end of life.
Consumer narratives help to provide a clearer direction as to what is important for hospital end-of-life care. Systems are needed to enable optimal end-of-life care, in accordance with consumer priorities, and embedded into routine hospital care.
The Liverpool Care Pathway was used in UK hospitals (late 1990s to July 2014) in an attempt to generate hospice-style high-quality end-of-life care in acute settings. Despite being widely established, there was limited research or contextual evidence regarding this approach or its impact. Growing criticism from the public, media, politicians and healthcare professionals culminated with a critical independent review (July 2013) and subsequent withdrawal of the Liverpool Care Pathway.
This research explores experiences of doctors using the Liverpool Care Pathway, prior to and during its withdrawal, to better understand shortfallings and inform future initiatives in hospital end-of-life care.
Individual semi-structured audio-recorded interviews were transcribed verbatim and concurrently analysed using thematic analysis.
Following ethical approval, volunteer participants from an acute UK hospital were sought (n = 73). A total of 18 specialist doctors were purposively selected.
Seven themes shaped doctors’ experiences of using the Liverpool Care Pathway: (1) changing perceptions according to length of clinical practice, (2) individual interpretation and application of the Liverpool Care Pathway, (3) limitations arising from setting, speciality and basic end-of-life care competence, (4) understanding and acceptance of medical uncertainty at the end-of-life, (5) centrality of communication and fear of discussing dying, (6) external challenges, including a culture to cure, role modelling and the media and (7) desire for reassurance in end-of-life care decisions.
Future initiatives in hospital end-of-life care must address doctors’ fears, (in)abilty to tolerate medical uncertainty, communication skills and understanding of the dying phase, in order to provide optimum care in the last days of life.
The London Chest Activities of Daily Living Scale measures the impact of breathlessness on both activity and social functioning. However, the London Chest Activities of Daily Living Scale is not routinely used in patients with advanced disease.
To assess the psychometric properties of the London Chest Activities of Daily Living Scale in patients with refractory breathlessness due to advanced disease.
A cross-sectional secondary analysis of data from a randomised controlled parallel-group, pragmatic, single-blind fast-track trial (randomised controlled trial) investigating the effectiveness of an integrated palliative and respiratory care service for patients with advanced disease and refractory breathlessness, known as the Breathlessness Support Service (NCT01165034). All patients completed the following questionnaires: the London Chest Activities of Daily Living Scale, Chronic Respiratory Questionnaire, the Palliative care Outcome Scale, Palliative care Outcome Scale–symptoms, the Hospital Anxiety and Depression Scale and breathlessness measured on a numerical rating scale. Data quality, scaling assumptions, acceptability, internal consistency and construct validity of the London Chest Activities of Daily Living Scale were determined using standard psychometric approaches.
Breathless patients with advanced malignant and non-malignant disease.
A total of 88 patients were studied, primary diagnosis included; chronic obstructive pulmonary disease = 53, interstitial lung disease = 17, cancer = 18. Median (range) London Chest Activities of Daily Living Scale total score was 46.5 (14–67). No floor or ceiling effect was observed for the London Chest Activities of Daily Living Scale total score. Internal consistency was good, and Cronbach’s alpha for the London Chest Activities of Daily Living Scale total score was 0.90. Construct validity was good with 13 out of 15 a priori hypotheses met.
Psychometric analyses suggest that the London Chest Activities of Daily Living Scale is acceptable, reliable and valid in patients with advanced disease and refractory breathlessness.
Pediatric advance care planning is advocated by healthcare providers because it may increase the chance that patient and/or parent wishes are respected and thus improve end-of-life care. However, since end-of-life decisions for children are particularly difficult and charged with emotions, physicians are often afraid of addressing pediatric advance care planning.
We aimed to investigate parents’ views and needs regarding pediatric advance care planning.
We performed a qualitative interview study with parents of children who had died from a severe illness. The interviews were analyzed by descriptive and evaluation coding according to Saldaña.
We conducted semi-structured interviews with 11 parents of 9 children. Maximum variation was sought regarding the child’s illness, age at death, care setting, and parent gender.
Parents find it difficult to engage in pediatric advance care planning but consider it important. They argue for a sensitive, individualized, and gradual approach. Hope and quality of life issues are primary. Parents have many non-medical concerns that they want to discuss. Written advance directives are considered less important, but medical emergency plans are viewed as necessary in particular cases. Continuity of care and information should be improved through regular pediatric advance care planning meetings with the various care providers. Parents emphasize the importance of a continuous contact person to facilitate pediatric advance care planning.
Despite a need for pediatric advance care planning, it is perceived as challenging. Needs-adjusted content and process and continuity of communication should be a main focus in pediatric advance care planning. Future research should focus on strategies that facilitate parent engagement in pediatric advance care planning to increase the benefit for the families.
Poor pain assessment is a barrier to effective pain control. There is growing interest internationally in the development and implementation of remote monitoring technologies to enhance assessment in cancer and chronic disease contexts. Findings describe the development and testing of pain monitoring systems, but research identifying the needs of health professionals to implement routine monitoring systems within clinical practice is limited.
To inform the development and implementation strategy of an electronic pain monitoring system, PainCheck, by understanding palliative care professionals’ needs when integrating PainCheck into routine clinical practice.
Qualitative study using face-to-face interviews. Data were analysed using framework analysis
Purposive sample of health professionals managing the palliative care of patients living in the community
A total of 15 interviews with health professionals took place. Three meta-themes emerged from the data: (1) uncertainties about integration of PainCheck and changes to current practice, (2) appraisal of current practice and (3) pain management is everybody’s responsibility
Even the most sceptical of health professionals could see the potential benefits of implementing an electronic patient-reported pain monitoring system. Health professionals have reservations about how PainCheck would work in practice. For optimal use, PainCheck needs embedding within existing electronic health records. Electronic pain monitoring systems have the potential to enable professionals to support patients’ pain management more effectively but only when barriers to implementation are appropriately identified and addressed.
Philip J Larkin, Fliss Murtagh, Heather Richardson, Myra Bluebond Langner and Sheila Payne (2016) Collaboration: Securing a future for palliative care research. Palliative Medicine, September 2016 30:8 709–710, doi:
Spiritual care is reported to be important to palliative patients. There is an increasing need for education in spiritual care.
To measure the effects of a specific spiritual care training on patients’ reports of their perceived care and treatment.
A pragmatic controlled trial conducted between February 2014 and March 2015.
The intervention was a specific spiritual care training implemented by healthcare chaplains to eight multidisciplinary teams in six hospitals on regular wards in which patients resided in both curative and palliative trajectories. In total, 85 patients were included based on the Dutch translation of the Supportive and Palliative Care Indicators Tool. Data were collected in the intervention and control wards pre- and post-training using questionnaires on physical symptoms, spiritual distress, involvement and attitudes (Spiritual Attitude and Involvement List) and on the perceived focus of healthcare professionals on patients’ spiritual needs.
All 85 patients had high scores on spiritual themes and involvement. Patients reported that attention to their spiritual needs was very important. We found a significant (p = 0.008) effect on healthcare professionals’ attention to patients’ spiritual and existential needs and a significant (p = 0.020) effect in favour of patients’ sleep. No effect on the spiritual distress of patients or their proxies was found.
The effects of spiritual care training can be measured using patient-reported outcomes and seemed to indicate a positive effect on the quality of care. Future research should focus on optimizing the spiritual care training to identify the most effective elements and developing strategies to ensure long-term positive effects. This study was registered at the Dutch Trial Register: NTR4559.
People with dementia have been described as the ‘disadvantaged dying’ with poor end-of-life care. Towards the end of life, people with dementia cannot report on the care they receive. It is therefore important to talk to caregivers; however, few have explored the views about end-of-life care from the caregivers’ perspective. The majority of research on family caregivers has focussed on the burden and psychological impact of caring for a relative with dementia.
This study aimed to explore the views of family caregivers about quality end-of-life care for people with dementia.
Qualitative study using in-depth interviews and analysed using thematic analysis.
Purposive sampling from a third sector organisation’s caregiver network was used to recruit 47 caregivers in England (2012–2013), consisting of (1) family caregivers of someone who had recently received a diagnosis of dementia, (2) family caregivers currently caring for someone with dementia and (3) bereaved family caregivers.
Three over-arching themes were derived from the interviewees’ discourse, including maintaining the person within, fostering respect and dignity and showing compassion and kindness.
End-of-life care for people with dementia does not differ from care throughout the dementia trajectory. Throughout the findings, there is an implicit underlying theme of conflict: conflict between family caregivers and an increasingly systematised service of care and conflict between family caregivers and professionals. This study has in particular demonstrated the importance of the psycho-social aspects of care, aligning with the holistic definition of palliative care.
The Surprise Question (SQ) identifies patients with palliative care needs. The NECPAL CCOMS-ICO© (NECPAL) tool combines the Surprise Question with additional clinical parameters for a more comprehensive assessment. The capacity of these screening tools to predict mortality is still unknown.
To explore the predictive validity of the NECPAL and SQ to determine 12- to 24-month mortality.
Longitudinal, prospective and observational cohort study.
Three primary care centres, one general hospital, one intermediate care centre, and four nursing homes. Population cohort with advanced chronic conditions and limited life prognosis. Patients were classified according to SQ and NECPAL criteria and followed for 24 months.
Data available to assess 1059 of 1064 recruited patients (99.6%) at 12 and 24 months: 837 patients were SQ+ and 780 were NECPAL+. Mortality rates at 24 months were as follows: 44.6% (SQ+) versus 15.8% (SQ–) and 45.8% (NECPAL+) versus 18.3% (NECPAL–) (p = 0.000). SQ+ and NECPAL+ identification was significantly correlated with 24-month mortality risk (hazard ratios: 2.719 and 2.398, respectively). Both tools were highly sensitive (91.4, CI: 88.7–94.1 and 87.5, CI: 84.3–90.7) with high negative predictive values (84.2, CI: 79.4–89.0 and 81.7, CI: 77.2–86.2), with low specificity and positive predictive value. The prognostic accuracy of SQ and NECPAL was 52.9% and 55.2%, respectively. The predictive validity was slightly better for NECPAL.
SQ and NECPAL are valuable screening instruments to identify patients with limited life prognosis who may require palliative care. More research is needed to increase its prognostic utility in combination with other parameters.
Family caregivers (broadly defined as family and friends) experience multiple concurrent transitions when caring for a person with advanced cancer.
To (a) explore the transition experience of family caregivers caring for persons with advanced cancer living in the community, (b) describe potential triggers for transitions, (c) identify what influences this experience, and (d) develop a conceptual framework of their transition experience.
Sandelowski and Barroso’s methodology for synthesizing qualitative research included (a) a comprehensive search of empirical literature, (b) quality appraisal of qualitative studies, (c) classification of studies, and (d) synthesis of the findings.
Literature was sourced from six electronic data bases. Inclusion criteria were as follows: (a) published qualitative studies (and mixed-method designs) of the caregiving experience of family caregivers of community-living persons with advanced cancer at the end of life, (b) participants (caregivers and care recipients) of 18 years of age and above, (c) studies published in English in any country, and (d) studies published between 2004 and 2014.
A total of 72 studies were included in the metasynthesis. Family caregivers experience a "life transition" whereby their lives are permanently altered. The participants described the process of redefining normal which consisted of coming to terms with their situation and connecting with others. Outcomes of these processes were as follows: (a) maintaining a sense of personhood, (b) reframing hope, (c) maintaining self-efficacy, (d) finding meaning, and (e) preparing for the death of their care recipient.
The findings provide a framework to guide the development of supportive programs and future research.
Symptom burden is common for long-term care residents with dementia which if untreated compromises quality of life. Measurement tools can support assessment of symptoms and problems but are not widely used in long-term care settings. We developed the Integrated Palliative care Outcome Scale for Dementia derived from the Palliative care Outcome Scale, Palliative care Outcome Scale–Symptom and Integrated Palliative care Outcome Scale.
To examine the content validity, acceptability and comprehension of Integrated Palliative care Outcome Scale for Dementia for routine use in long-term care settings for people with dementia and to refine Integrated Palliative care Outcome Scale for Dementia.
A multi-method qualitative study consisting of focus groups, semi-structured interviews and cognitive interviews.
Three residential long-term care settings in London, UK. Focus group and semi-structured interview participants included caregiver staff, family, general practitioners and district nurses. Caregiver staff were sampled purposively for cognitive interviews.
A total of 26 respondents participated in the focus groups (n = 21) or semi-structured interviews (n = 5) and 10 caregiver staff completed cognitive interviews. Additional symptoms and problems included agitation, wandering, sleep problems, communication problems and diarrhoea. Refinements or lay terms were required to improve comprehension and consistency of item response for nausea, drowsiness, delusions/hallucinations, agitation, loss of interest, communication problems and interaction. A video presentation was required to support comprehension of instructions and assessment of verbally compromised residents.
Integrated Palliative care Outcome Scale for Dementia is a comprehensive and acceptable caregiver-reported measure to detect symptoms and problems in dementia. It is suitable for caregiver staff without professional training as it has been refined and tailored to maximise caregiver expertise, ready for further psychometric testing.
Particularly at the end of life, treatment decisions should be shared and incorporate patients’ preferences. This study examines elaboration and preference construction.
To examine the values, appraisals and preferences that patients express, as well as the oncologists’ communicative behaviour that facilitates these expressions in consultations on palliative chemotherapy.
Verbatim transcripts of audio-recorded consultations (n = 60) were analysed in MAXqda10 software. Two independent coders identified and categorised patients’ preference-related utterances and oncologists’ utterances, preceding and following such expressions.
Cancer patients (n = 41) with a median life expectancy <1 year and oncologists (n = 13) meeting with them in either initial or evaluative follow-up consultations.
Most frequent were patients’ expressions of treatment preferences (65% of consultations), often the simple wish to have treatment. Expressions of underlying values (48%) and appraisals of treatment aspects (50%) were less common. Most preference-related utterances concerned single statements (59%); in 51% of the consultations, true dialogue was observed. Preference-related utterances were least common in follow-up consultations concerning stable disease or response. Preference-related fragments were patient-initiated (42%), oncologist-facilitated (28%) or oncologist-invited (30%). Oncologist responses likely to trigger more preference-related talk were showing empathy, checking and probe questioning. Likely to reduce space were providing information, personally agreeing and neutral responses.
Elaboration and joint preference construction is not standard practice in consultations on palliative chemotherapy. Oncologists may benefit from realising this and training skills that support this key step of shared decision making. Also, repeated shared decision making throughout the course of palliative chemotherapy should be stimulated.
Pain management is a cornerstone of palliative care. The clinical issues encountered by physicians when managing pain in patients dying with advanced dementia, and how these may impact on prescribing and treatment, are unknown.
To explore physicians’ experiences of pain management for patients nearing the end of life, the impact of these on prescribing and treatment approaches, and the methods employed to overcome these challenges.
Qualitative, semi-structured interview study exploring barriers to and facilitators of pain management, prescribing and treatment decisions, and training needs. Thematic analysis was used to elicit key themes.
A total of 23 physicians, responsible for treating patients with advanced dementia approaching the end of life, were recruited from primary care (n = 9), psychiatry (n = 7) and hospice care (n = 7).
Six themes emerged: diagnosing pain, complex prescribing and treatment approaches, side effects and adverse events, route of administration, importance of sharing knowledge and training needs. Knowledge exchange was often practised through liaison with physicians from other specialities. Cross-speciality mentoring and the creation of knowledge networks were believed to improve pain management in this patient population.
Pain management in end-stage dementia is complex, requiring cross-population of knowledge between palliative care specialists and non-specialists, in addition to collateral information provided by other health professionals and patients’ families. Regular, cost- and time-effective mentoring and ongoing professional development are perceived to be essential in empowering physicians to meet clinical challenges in this area.
Patients requiring non-invasive ventilation for acute-on-chronic respiratory failure due to chronic obstructive pulmonary disease or heart failure exacerbations may have a poor prognosis underscoring the importance of advance care planning.
We aimed to describe attitudes to, and experiences of, discussing the future among patients recently treated with non-invasive ventilation.
Qualitative research using thematic analysis.
Tertiary teaching hospital. Patients with acute hypercapnic respiratory failure requiring non-invasive ventilation.
Individuals recently treated with non-invasive ventilation describe feeling the future is beyond their control and instead controlled by their illness. Participants often recognised their poor prognosis but avoided discussing some difficult topics. The majority preferred not to undergo cardiopulmonary resuscitation but most had not discussed this with healthcare professionals. When participants voiced concerns about their future health to family members, they were met with polarised responses. Some encountered willingness for further discussion, while others met deflection, deterring further conversation. An overarching narrative of ‘Looking through my illness to an uncertain but concerning future’ unites these themes.
This study suggests opportunities and barriers for advance care planning in individuals with chronic disease. Patients’ understanding of their prognosis and their attitudes to cardiopulmonary resuscitation suggests an opportunity for advance care planning. Structuring discussions around patients’ preferences for care during future exacerbations may foster a sense of control over the future despite illness. The diversity of familial responses to patients’ concerns about their future health has implications for advance care planning. These findings have the potential to improve care for patients with respiratory failure and suggest an important ongoing research agenda.
Studies aiming to identify palliative care populations have used data from death certificates and in some cases hospital records. The size and characteristics of the identified populations can show considerable variation depending on the data sources used. It is important that service planners and researchers are aware of this.
To illustrate the differences in the size and characteristics of a potential palliative care population depending on the differential use of linked hospital records and death certificate data.
Retrospective cohort study.
The cohort consisted of 23,852 people aged 20 years and over who died in Western Australia between 1 January 2009 and 31 December 2010 after excluding deaths related to pregnancy or trauma. Within this cohort, the number, proportion and characteristics of people who died from one or more of 10 medical conditions considered amenable to palliative care were identified using linked hospital records and death certificate data.
Depending on the information source(s) used, between 43% and 73% of the 23,852 people who died had a condition potentially amenable to palliative care identified. The median age at death and the sex distribution of the decedents by condition also varied with the information source.
Health service planners and researchers need to be aware of the limitations when using hospital records and death certificate data to determine a potential palliative care population. The use of Emergency Department and other administrative data sources could further exacerbate this variation.
Patients with advanced conditions may present a wish to hasten death. Assessing this wish is complex due to the nature of the phenomenon and the difficulty of conceptualising it.
To identify and analyse existing instruments for assessing the wish to hasten death and to rate their reported psychometric properties.
Systematic review based on PRISMA guidelines. The COnsensus-based Standards for the selection of health Measurement INstruments checklist was used to evaluate the methodological quality of validation studies and the measurement properties of the instrument described.
The CINAHL, PsycINFO, Pubmed and Web of Science databases were searched from inception to November 2015.
A total of 50 articles involving assessment of the wish to hasten death were included. Eight concerned instrument validation and were evaluated using COnsensus-based Standards for the selection of health Measurement INstruments criteria. They reported data for between two and seven measurement properties, with ratings between fair and excellent. Of the seven instruments identified, the Desire for Death Rating Scale or the Schedule of Attitudes toward Hastened Death feature in 48 of the 50 articles. The Schedule of Attitudes toward Hastened Death is the most widely used and is the instrument whose psychometric properties have been most often analysed. Versions of the Schedule of Attitudes toward Hastened Death are available in five languages other than the original English.
This systematic review has analysed existing instruments for assessing the wish to hasten death. It has also explored the methodological quality of studies that have examined the measurement properties of these instruments and offers ratings of the reported properties. These results will be useful to clinicians and researchers with an interest in a phenomenon of considerable relevance to advanced patients.
Increasing importance is being placed on the coordination of services at the end of life.
To describe decision-making processes that influence transitions in care when approaching the end of life.
Qualitative study using field observations and longitudinal semi-structured interviews.
Field observations were undertaken in three sites: a residential care home, a medical assessment unit and a general medical unit in New Zealand. The Supportive and Palliative Care Indicators Tool was used to identify participants with advanced and progressive illness. Patients and family members were interviewed on recruitment and 3–4 months later. Four weeks of fieldwork were conducted in each site. A total of 40 interviews were conducted: 29 initial interviews and 11 follow-up interviews. Thematic analysis was undertaken.
Managing risk was an important factor that influenced transitions in care. Patients and health care staff held different perspectives on how such risks were managed. At home, patients tolerated increasing risk and used specific support measures to manage often escalating health and social problems. In contrast, decisions about discharge in hospital were driven by hospital staff who were risk-adverse. Availability of community and carer services supported risk management while a perceived need for early discharge decision making in hospital and making ‘safe’ discharge options informed hospital discharge decisions.
While managing risk is an important factor during care transitions, patients should be able to make choices on how to live with risk at the end of life. This requires reconsideration of transitional care and current discharge planning processes at the end of life.
A proportion of newly qualified doctors report feeling unprepared to manage patients with palliative care and end-of-life needs. This may be related to barriers within their institution during undergraduate training. Information is limited regarding the current organisation of palliative care teaching across UK medical schools.
To investigate the evolution and structure of palliative care teaching at UK medical schools.
Anonymised, web-based questionnaire.
Results were obtained from palliative care course organisers at all 30 UK medical schools.
The palliative care course was established through active planning (13/30, 43%), ad hoc development (10, 33%) or combination of approaches (7, 23%). The place of palliative care teaching within the curriculum varied. A student-selected palliative care component was offered by 29/30 (97%). All medical schools sought student feedback. The course was reviewed in 26/30 (87%) but not in 4. Similarly, a course organiser was responsible for the palliative care programme in 26/30 but not in 4. A total of 22 respondents spent a mean of 3.9 h (median 2.5)/week in supporting/delivering palliative care education (<1–16 h). In all, 17/29 (59%) had attended a teaching course or shared duties with a colleague who had done so. Course organisers received titular recognition in 18/27 (67%; no title 9 (33%); unknown 3 (11%)). An academic department of Palliative Medicine existed in 12/30 (40%) medical schools. Funding was not universally transparent. Palliative care teaching was associated with some form of funding in 20/30 (66%).
Development, organisation, course evaluation and funding for palliative care teaching at UK medical schools are variable. This may have implications for delivery of effective palliative care education for medical students.
To implement the appropriate services and develop adequate interventions, detailed estimates of the needs for palliative care in the population are needed.
To estimate the proportion of decedents potentially in need of palliative care across 12 European and non-European countries.
This is a cross-sectional study using death certificate data.
All adults (>=18 years) who died in 2008 in Belgium, Czech Republic, France, Hungary, Italy, Spain (Andalusia, 2010), Sweden, Canada, the United States (2007), Korea, Mexico, and New Zealand (N = 4,908,114). Underlying causes of death were used to apply three estimation methods developed by Rosenwax et al., the French National Observatory on End-of-Life Care, and Murtagh et al., respectively.
The proportion of individuals who died from diseases that indicate palliative care needs at the end of life ranged from 38% to 74%. We found important cross-country variation: the population potentially in need of palliative care was lower in Mexico (24%–58%) than in the United States (41%–76%) and varied from 31%–83% in Hungary to 42%–79% in Spain. Irrespective of the estimation methods, female sex and higher age were independently associated with the likelihood of being in need of palliative care near the end of life. Home and nursing home were the two places of deaths with the highest prevalence of palliative care needs.
These estimations of the size of the population potentially in need of palliative care provide robust indications of the challenge countries are facing if they want to seriously address palliative care needs at the population level.
Palliative care is recommended for non-malignant illnesses, including Parkinson’s disease. However, past research with healthcare workers highlights unmet palliative needs in this population and referral rates to Specialist Palliative Care are low. Some healthcare workers perceive a ‘fear’ in their patients about introducing palliative care. However, less is known about the views of people with Parkinson’s disease and their carers about palliative care.
(1) To explore the palliative care and related issues most affecting people with Parkinson’s disease and their families and (2) to examine perceptions about/understanding of palliative care.
This was a qualitative study; semi-structured interviews were conducted, transcribed and analysed using thematic analysis.
A total of 31 people participated, both people with Parkinson’s disease (n = 19) and carers (n = 12), across three Movement Disorder Clinics in the Republic of Ireland.
People with Parkinson’s disease and their carers were unfamiliar with the term palliative care. When informed of the role of palliative care, most felt that they would benefit from this input. People with Parkinson’s disease and carers experienced a high illness burden and wanted extra support. Crises requiring Specialist Palliative Care involvement may occur at diagnosis and later, with advancing illness. Participants wanted more information about palliative care and especially further supports to address their psychosocial needs.
A holistic palliative care approach could address the complex physical and psychosocial symptoms experienced by people with Parkinson’s disease and their carers, and people with Parkinson’s disease and their carers are open to palliative care. Further research needs to explore how palliative care can be introduced into the routine care for people with Parkinson’s disease.
To explore kaumātua attitudes towards physician aid-in dying, to gain a clear understanding of how such attitudes may influence and shape their expectations of medical care at the end of life and to assist health professionals in Aotearoa/New Zealand to address the healthcare needs of older Māori near the end of life.
A kaupapa Māori consistent approach was undertaken. A systematic narrative technique was employed for the qualitative data analysis. Data were triangulated through independent data coding by three researchers (two of whom identified as Māori researchers), to ensure a robust and consistent method of analysis as well as adhering to a kaupapa Māori research approach.
Recruitment of participants was through kaumātua of Te Kupenga Hauora Māori (Māori leadership within the Faculty of Medical and Health Sciences), University of Auckland and local Auckland marae. Focus group or individual interviews (as per their preference) were undertaken with 20 Kaumātua from the Auckland region.
Five closely interrelated themes were identified from kaumātua narratives regarding physician aid-in dying. These were (1) attitudes and understandings of physician aid-in dying, (2) influence of power, (3) significance of kawa, (4) whānau relationships and the (5) significance of wairua.
The study demonstrated that for these kaumātua, medical practices that hasten death such as physician aid-in dying are ‘not all just about the dying’. Tikanga and kawa are important processes and concepts to understand during death and dying, and whānau are central to such processes being respected by those involved in the dying process. These factors are so closely intertwined that they cannot be considered in separation of each other.
Palliative care patients have numerous rehabilitation needs that increase with disease progression. Palliative rehabilitation practices and perceptions of palliative medicine physicians towards the role of rehabilitation are largely unstudied.
To explore palliative medicine physicians’ attitudes and perceptions towards rehabilitation delivered within inpatient palliative care units.
Qualitative study utilizing semi-structured interviews. Transcribed interviews were analysed using thematic analysis and major themes reported as results.
Australian palliative medicine physicians working in inpatient palliative care units.
In total, 20 physicians participated, representing specialist palliative care services across Australia. A total of 11 (55%) were males with an average of 12.5 years’ experience working in palliative care. Most participants believed rehabilitation was an important aspect of palliative care; however, few felt adequate rehabilitation programmes were available. Participants varied in their concepts of what palliative rehabilitation entailed. The term rehabilitation was seen by some as helpful (fostering hope and aiding transitions) and by others to be misleading (creating unrealistic expectations). Four key themes emerged when describing physicians’ attitudes, including (1) integrating rehabilitation within palliative care, (2) the intervention, (3) possibilities and (4) the message of rehabilitation.
A lack of consensus exists among palliative medicine specialists regarding the definition and scope of palliative rehabilitation. Participants generally expressed a wish to offer enhanced rehabilitation interventions, however described resource and skill-set limitations as significant barriers. Further research is required to establish an evidence base for palliative rehabilitation, to support its acceptance and widespread integration within specialist inpatient palliative care.
It is important to understand the costs of palliative and end-of-life care in order to inform decisions regarding cost allocation. However, economic research in palliative care is very limited and little is known about the range and extent of the costs that are involved in palliative care provision.
To undertake a systematic review of the health and social care literature to determine the range of financial costs related to a palliative care approach and explore approaches used to measure these costs.
A systematic review of empirical literature with thematic synthesis. Study quality was evaluated using the Weight of Evidence Framework.
The databases CINAHL, Cochrane, PsycINFO and Medline were searched from 1995 to November 2015 for empirical studies which presented data on the financial costs associated with palliative care.
A total of 38 papers met our inclusion criteria. Components of palliative care costs were incurred within four broad domains: hospital care, community or home-based care, hospice care and informal care. These costs could be considered from the economic viewpoint of three providers: state or government, insurers/third-party/not-for-profit organisations and patient and family and/or society. A wide variety of costing approaches were used to derive costs.
The evidence base regarding the economics of palliative care is sparse, particularly relating to the full economic costs of palliative care. Our review provides a framework for considering these costs from a variety of economic viewpoints; however, further research is required to develop and refine methodologies.
A growing number of older people are living in single households. They form a disadvantaged group within society as regards staying at home, most likely towards the end-of-life. It is mainly non-kin-carers who try to fulfil older people’s desire for a home death, but very little is known about the challenges they face during their involvement.
Getting insight into the engagement of non-kin-carers in the support for older people living alone, and a better understanding of the challenges they have to manage in end-of-life care.
Exploratory qualitative design; perspectives of non-kin-carers were collected through personal in-depth interviews (n = 15) retrospectively.
Home care, urban and rural areas in Austria
A slow and subtle transition into care is what characterizes non-kin-care relationships which show differences between friends and neighbours. Towards the end of life, the main challenges emerged around increased physical care needs, issues of decision-making and facing the process of dying. Prior experiences with the latter, which most of the involved carers had, influenced non-kin-carers’ steadiness to allow home death and so did reliable formal support, particularly from specialized palliative care teams.
Support of older people living alone, in particular until the last stage of life, comes along with multiple efforts. Respectful and supporting relationships between professional carers and non-kin-carers are vital to keep non-kin-carers involved.
Researchers report difficulties in conducting research with children and young people with life-limiting conditions or life-threatening illnesses and their families. Recruitment is challenged by barriers including ethical, logistical and clinical considerations.
To explore how children and young people (aged 0–25 years) with life-limiting conditions or life-threatening illnesses and their families were identified, invited and consented to research published in the last 5 years.
Systematic review.
MEDLINE, PsycINFO, Web of Science, Sciences Citation Index and SCOPUS were searched for original English language research published between 2009 and 2014, recruiting children and young people with life-limiting conditions or life-threatening illness and their families.
A total of 215 studies – 152 qualitative, 54 quantitative and 9 mixed methods – were included. Limited recruitment information but a range of strategies and difficulties were provided. The proportion of eligible participants from those screened could not be calculated in 80% of studies. Recruitment rates could not be calculated in 77%. A total of 31% of studies recruited less than 50% of eligible participants. Reasons given for non-invitation included missing clinical or contact data, or clinician judgements of participant unsuitability. Reasons for non-participation included lack of interest and participants’ perceptions of potential burdens.
All stages of recruitment were under reported. Transparency in reporting of participant identification, invitation and consent is needed to enable researchers to understand research implications, bias risk and to whom results apply. Research is needed to explore why consenting participants decide to take part or not and their experiences of research recruitment.
Dignity therapy is psychotherapy to relieve psychological and existential distress in patients at the end of life. Little is known about its effect.
To analyse the outcomes of dignity therapy in patients with advanced life-threatening diseases.
Systematic review was conducted. Three authors extracted data of the articles and evaluated quality using Critical Appraisal Skills Programme. Data were synthesized, considering study objectives.
PubMed, CINAHL, Cochrane Library and PsycINFO. The years searched were 2002 (year of dignity therapy development) to January 2016. ‘Dignity therapy’ was used as search term. Studies with patients with advanced life-threatening diseases were included.
Of 121 studies, 28 were included. Quality of studies is high. Results were grouped into effectiveness, satisfaction, suitability and feasibility, and adaptability to different diseases and cultures. Two of five randomized control trials applied dignity therapy to patients with high levels of baseline psychological distress. One showed statistically significant decrease on patients’ anxiety and depression scores over time. The other showed statistical decrease on anxiety scores pre–post dignity therapy, not on depression. Nonrandomized studies suggested statistically significant improvements in existential and psychosocial measurements. Patients, relatives and professionals perceived it improved end-of-life experience.
Evidence suggests that dignity therapy is beneficial. One randomized controlled trial with patients with high levels of psychological distress shows DT efficacy in anxiety and depression scores. Other design studies report beneficial outcomes in terms of end-of-life experience. Further research should understand how dignity therapy functions to establish a means for measuring its impact and assessing whether high level of distress patients can benefit most from this therapy.
Compassion is considered an essential element in quality patient care. One of the conceptual challenges in healthcare literature is that compassion is often confused with sympathy and empathy. Studies comparing and contrasting patients’ perspectives of sympathy, empathy, and compassion are largely absent.
The aim of this study was to investigate advanced cancer patients’ understandings, experiences, and preferences of "sympathy," "empathy," and "compassion" in order to develop conceptual clarity for future research and to inform clinical practice.
Data were collected via semi-structured interviews and then independently analyzed by the research team using the three stages and principles of Straussian grounded theory.
Data were collected from 53 advanced cancer inpatients in a large urban hospital.
Constructs of sympathy, empathy, and compassion contain distinct themes and sub-themes. Sympathy was described as an unwanted, pity-based response to a distressing situation, characterized by a lack of understanding and self-preservation of the observer. Empathy was experienced as an affective response that acknowledges and attempts to understand individual’s suffering through emotional resonance. Compassion enhanced the key facets of empathy while adding distinct features of being motivated by love, the altruistic role of the responder, action, and small, supererogatory acts of kindness. Patients reported that unlike sympathy, empathy and compassion were beneficial, with compassion being the most preferred and impactful.
Although sympathy, empathy, and compassion are used interchangeably and frequently conflated in healthcare literature, patients distinguish and experience them uniquely. Understanding patients’ perspectives is important and can guide practice, policy reform, and future research.
Studies have indicated that family members or health professionals may not know or predict their older relatives’ or patients’ health preferences. Although advance care planning is encouraged for older people to prepare end-of-life care, it is still challenging.
To understand the experiences and perspectives of older people regarding advance care planning.
A systematic review of qualitative studies and meta-synthesis was conducted.
CINAHL, MEDLINE, EMBASE, and PsycINFO databases were searched.
A total of 50 articles were critically appraised and a thematic synthesis was undertaken. Four themes were identified: life versus death, internal versus external, benefits versus burdens, and controlling versus being controlled. The view of life and death influenced older people’s willingness to discuss their future. The characteristics, experiences, health status, family relationship, and available resources also affected their plans of advance care planning. Older people needed to balance the benefits and burdens of advance care planning, and then judge their own ability to make decisions about end-of-life care.
Older people’s perspectives and experiences of advance care planning were varied and often conflicted; cultural differences amplified variances among older people. Truthful information, available resources, and family support are needed to enable older people to maintain dignity at the end of life. The views of life and death for older people from different cultures should be compared to assist health professionals to understand older people’s attitudes toward advance care planning, and thus to develop appropriate strategies to promote advance care planning in different cultures.
For patients with cancer-related pain, the numeric rating scale is the most frequently used instrument to measure pain intensity. In the literature, it has been suggested to interpret patient-reported ratings of pain in relation to the pain intensity which is acceptable to the individual patient.
We aimed to examine the feasibility and course of acceptable pain intensity.
A secondary analysis of a randomized controlled trial that tested the effectiveness of standard care versus standard care supplemented by a pain consultation combined with a patient pain education program.
A total of 72 patients were included from an outpatient oncology clinic of a university hospital. They were diagnosed with cancer-related nociceptive pain with an average pain intensity >=4.
Most patients (97%) were able to give a score for acceptable pain. Almost half of the patients scored their acceptable pain in the range of moderate to severe. Patients’ ratings of acceptable pain were stable; after 8 weeks, 69% of patients had a variation of up to 1 point compared to baseline. However, the mean acceptable pain intensity remained equal in the standard care group (from 4.6 (range: 0–8) to 5.0 (range: 2–8)) and decreased in the intervention group (from 4.6 (range: 2–8) to 3.8 (range: 0–7, p < 0.01), difference between groups p < 0.05).
Measurement of acceptable pain intensity is feasible. Patients with additional pain treatment became more critical and accepted less pain. More research is needed before we can use acceptable pain intensity as a reference for the interpretation of pain ratings.
The need to improve coordination of care at end of life has driven electronic palliative care coordination systems implementation across the United Kingdom and internationally. No approaches for evaluating electronic palliative care coordination systems use in practice have been developed.
This study outlines and applies an evaluation framework for examining how and when electronic documentation of advance care planning is occurring in end of life care services.
A pragmatic, formative process evaluation approach was adopted. The evaluation drew on the Project Review and Objective Evaluation methodology to guide the evaluation framework design, focusing on clinical processes.
Data were extracted from electronic palliative care coordination systems for 82 of 108 general practices across a large UK city. All deaths (n = 1229) recorded on electronic palliative care coordination systems between April 2014 and March 2015 were included to determine the proportion of all deaths recorded, median number of days prior to death that key information was recorded and observations about routine data use.
The evaluation identified 26.8% of all deaths recorded on electronic palliative care coordination systems. The median number of days to death was calculated for initiation of an electronic palliative care coordination systems record (31 days), recording a patient’s preferred place of death (8 days) and entry of Do Not Attempt Cardiopulmonary Resuscitation decisions (34 days). Where preferred and actual place of death was documented, these were matching for 75% of patients. Anomalies were identified in coding used during data entry on electronic palliative care coordination systems.
This study reports the first methodology for evaluating how and when electronic palliative care coordination systems documentation is occurring. It raises questions about what can be drawn from routine data collected through electronic palliative care coordination systems and outlines considerations for future evaluation. Future evaluations should consider work processes of health professionals using electronic palliative care coordination systems.
Prior work shows that palliative homecare services reduce the subsequent need for hospitalizations and emergency services; however, no study has investigated whether this association is present for emergency department visits of high acuity or whether it only applies to low-acuity emergency department visits.
To examine the association between palliative versus standard homecare nursing and the rate of high-acuity and low-acuity emergency department visits among cancer decedents during their last 6 months of life.
This is a retrospective cohort study of end-of-life homecare patients in Ontario, Canada, who had confirmed cancer cause of death from 2004 to 2009. A multivariable Poisson regression analysis was implemented to examine the association between the receipt of palliative homecare nursing (vs standard homecare nursing) and the rate of high- and low-acuity emergency department visits, separately.
There were 54,743 decedents who received homecare nursing in the last 6 months of life. The receipt of palliative homecare nursing decreased the rate of low-acuity emergency department visits (relative rate = 0.53, 95% confidence interval = 0.50–0.56) and was significantly associated with a larger decrease in the rate of high-acuity emergency department visits (relative rate = 0.37, 95% confidence interval = 0.35–0.38).
Receiving homecare nursing with palliative intent may decrease the need for dying cancer patients to visit the emergency department, for both high and low-acuity visits, compared to receiving general homecare nursing. Policy implications include building support for additional training in palliative care to generalist homecare nurses and increasing access to palliative homecare nursing.
Globally, most care for people with life-limiting illnesses is provided by informal caregivers. Identifying characteristics of caregivers that may have unmet needs and negative outcomes can help provide better support to facilitate adjustment.
We compared characteristics, expressed unmet needs and outcomes for spousal caregivers, with other caregivers at the end of life, by gender and age.
The South Australian Health Omnibus is an annual, random, face-to-face, cross-sectional survey wherein respondents are asked about end-of-life care.
Participants were aged over 15 years, resided in households in South Australia and had someone close to them die from a terminal illness in the last 5 years.
Of the 1540 respondents who provided hands-on care for someone close at the end of life, 155 were widows/widowers. Bereaved spousal caregivers were more likely to be older, female, better educated, have lower incomes, less full-time work, English as second language, sought help with grief and provided more day-to-day care for longer periods. Spousal caregivers were less likely to be willing to take on caregiving again, less able to ‘move on’ with life and needed greater emotional support and information about illness and services. The only difference between widows and widowers was older age of spouse in women. Younger spousal caregivers perceived greater unmet emotional needs and were significantly less likely to be able to ‘move on’.
Spousal caregivers are different from other caregivers, with more intense needs that are not fully met. These have implications for bereavement, health and social services.
Early palliative care improves quality of life and satisfaction with care and is increasingly endorsed for patients with advanced cancer. However, little is known about the experience of receiving early palliative care from a patient and caregiver perspective.
The aim of this qualitative study was to determine, from a participant perspective, the experience of receiving early palliative care and elements of that care.
Qualitative grounded theory study using individual interviews.
The study took place at a comprehensive cancer centre. Patients (n = 26) and caregivers (n = 14) from the intervention arm of a cluster-randomised controlled trial of early palliative care versus standard oncology care participated in qualitative interviews. Participants were asked to comment on their quality of life, the quality of care provided over the intervention period and their experiences with the palliative care team.
Participants described feeling supported and guided in their illness experience and in their navigation of the healthcare system. Specific elements of early palliative care included prompt, personalised symptom management; holistic support for patients and caregivers; guidance in decision-making; and preparation for the future. Patients with symptoms particularly valued prompt attention to their physical concerns, while those without symptoms valued other elements of care. Although three patients were ambivalent about their current need for palliative care, no distress was reported as a consequence of the intervention.
The elements of care described by participants may be used to develop, support and refine models of early palliative care for patients with cancer.
Decisions about palliative systemic treatment are key elements of palliative and end-of-life care. Such decisions must often be made in complex, clinical situations.
To explore the content of medical records of patients with advanced non-small cell lung cancer and pancreatic cancer with specific emphasis on doctors’ notes about decisions on palliative systemic treatment.
Medical record review (2009–2012) of 147 cancer patients containing 276 notes about palliative systemic treatment. We described the proportion of notes/medical records containing pre-specified items relevant to palliative systemic treatment. We selected patients using the nationwide Netherlands Cancer Registry.
Hospital based.
About 75% of all notes reported doctors’ considerations to start/continue palliative systemic treatment, including information about the prognosis (47%), possible survival gain (22%), patients’ wish for palliative systemic treatment (33%), impact on quality of life (8%), and patient’s age (3%). Comorbidity (82%), smoking status (78%) and drinking behaviour (63%) were more often documented than patients’ performance status (16%). Conversations with the patient/family about palliative systemic treatment were reported in 49% of all notes. Response measurements and dose adaptations were documented in 75% and 71% of patients who received palliative systemic treatment respectively.
Medical records provide insight into the decision-making process about palliative systemic treatment. The content and detail of doctors’ notes, however, widely varies especially concerning their palliative systemic treatment considerations. Registries that aim to measure the quality of (end-of-life) care must be aware of this outcome. Future research should further explore how medical records can best assist in evaluating the quality of the decision-making process in the patient’s final stage of life.
No systematic meta-analysis is available on the prevalence of cancer patients’ accurate prognostic awareness and differences in accurate prognostic awareness by publication year, region, assessment method, and service received.
To examine the prevalence of advanced/terminal cancer patients’ accurate prognostic awareness and differences in accurate prognostic awareness by publication year, region, assessment method, and service received.
Systematic review and meta-analysis.
MEDLINE, Embase, The Cochrane Library, CINAHL, and PsycINFO were systematically searched on accurate prognostic awareness in adult patients with advanced/terminal cancer (1990–2014). Pooled prevalences were calculated for accurate prognostic awareness by a random-effects model. Differences in weighted estimates of accurate prognostic awareness were compared by meta-regression.
In total, 34 articles were retrieved for systematic review and meta-analysis. At best, only about half of advanced/terminal cancer patients accurately understood their prognosis (49.1%; 95% confidence interval: 42.7%–55.5%; range: 5.4%–85.7%). Accurate prognostic awareness was independent of service received and publication year, but highest in Australia, followed by East Asia, North America, and southern Europe and the United Kingdom (67.7%, 60.7%, 52.8%, and 36.0%, respectively; p = 0.019). Accurate prognostic awareness was higher by clinician assessment than by patient report (63.2% vs 44.5%, p < 0.001).
Less than half of advanced/terminal cancer patients accurately understood their prognosis, with significant variations by region and assessment method. Healthcare professionals should thoroughly assess advanced/terminal cancer patients’ preferences for prognostic information and engage them in prognostic discussion early in the cancer trajectory, thus facilitating their accurate prognostic awareness and the quality of end-of-life care decision-making.
Structured family meeting procedures and guidelines suggest that these forums enhance family–patient–team communication in the palliative care inpatient setting. However, the vulnerability of palliative patients and the resources required to implement family meetings in accordance with recommended guidelines make better understanding about the effectiveness of this type of intervention an important priority.
This systematic review examines the evidence supporting family meetings as a strategy to address the needs of palliative patients and their families. The review conforms to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Statement.
Six medical and psychosocial databases and "CareSearch," a palliative care–specific database, were used to identify studies reporting empirical data, published in English in peer-reviewed journals from 1980 to March 2015. Book chapters, expert opinion, and gray literature were excluded. The Cochrane Collaboration Tool assessed risk of bias.
Of the 5051 articles identified, 13 met the inclusion criteria: 10 quantitative and 3 qualitative studies. There was low-level evidence to support family meetings. Only two quantitative pre- and post-studies used a validated palliative care family outcome measure with both studies reporting significant results post-family meetings. Four other quantitative studies reported significant results using non-validated measures.
Despite the existence of consensus-based family meeting guidelines, there is a paucity of evidence to support family meetings in the inpatient palliative care setting. Further research using more robust designs, validated outcome measures, and an economic analysis are required to build the family meeting evidence before they are routinely adopted into clinical practice.
Patients with advanced cancer who have dependent children are an important population with a life-limiting illness and high levels of psychological distress. Few studies have addressed the experience of being a parent with advanced cancer and their potential palliative needs.
To describe the experience of living with advanced cancer as a parent, including illness experience, parental concerns, and treatment decision making and to explore whether these experiences differ by their functional status.
We conducted a cross-sectional, qualitative study using in-depth, semi-structured interviews. Data were analyzed using thematic content analysis.
A total of 42 participants with metastatic cancer and with at least one child under the age of 18 years were recruited from a comprehensive cancer center. 25 participants were rated as having high functional status (the Eastern Cooperative Oncology Group (ECOG) Performance Status Scale = 0–1) and 17 with low functional status (ECOG=2–4).
We identified four themes regarding the experience of being a parent with advanced cancer: (1) parental concerns about the impact of their illness and death on their children, (2) "missing out" and losses of parental role and responsibilities, (3) maintaining parental responsibilities despite life-limiting illness, and (4) parental identity influencing decision making about treatment. Parental functional status influenced not only physical responsibilities but also intensified parenting psychological concerns.
Parents with metastatic cancer may have unique palliative care needs as they experience parenting concerns while managing the psychological and physical demands of advanced cancer.
Transfers from hospital or ‘hospice palliative care units’ to care homes for end-of-life care are an increasingly common part of clinical practice but are a source of anxiety and distress for patients, relatives and healthcare professionals.
To understand the experiences of patients discharged to care homes for end-of-life care.
Systematic review and narrative synthesis of the UK literature concerning inpatient transfer from a hospital or hospice palliative care unit to a care home for end-of-life care.
The published literature is very limited: only three papers and one conference abstract were identified, all of low quality using Gough’s weight of evidence assessment. No papers examined transfer from hospital: all were of transfers from hospices and were retrospective case note reviews. Many patients were reported to have been negative or ambivalent about moving and experienced feelings of anxiety or abandonment when transferred. Relatives were often either vehemently opposed or ambivalent. Although some came to accept transfer, others reported the transfer to have seriously affected their loved one’s quality of life and that the process of finding a care home had been traumatic. No studies investigated patients’ views prospectively, the views of staff or the processes of decision-making.
The UK literature is very limited, despite such transfers being an increasingly common part of clinical practice and a source of concern to patients, relatives and staff alike. Further research is urgently needed in this area, especially studies of patients themselves, in order to understand their experiences and views.
Dipyrone (metamizole) is one of the most widely used non-opioid analgesics for the treatment of cancer pain.
Because evidence-based recommendations are not yet available, a systematic review was conducted for the German Guideline Program in Oncology to provide recommendations for the use of dipyrone in cancer pain.
First, a systematic review for clinical trials assessing dipyrone in adult patients with cancer pain was conducted. Endpoints were pain intensity, opioid-sparing effects, safety, and quality of life.
The search was performed in MedLine, Embase (via Ovid), and the Cochrane Library (1948–2013) and additional hand search was conducted. Finally, recommendations were developed and agreed in a formal structured consensus process by 53 representatives of scientific medical societies and 49 experts.
Of 177 retrieved studies, 4 could be included (3 randomized controlled trials and 1 cohort study, n = 252 patients): dipyrone significantly decreased pain intensity compared to placebo, even if low doses (1.5–2 g/day) were used. Higher doses (3 x 2 g/day) were more effective than low doses (3 x 1 g/day), but equally effective as 60 mg oral morphine/day. Pain reduction of dipyrone and non-steroidal anti-inflammatory drugs did not differ significantly. Compared to placebo, non-steroidal anti-inflammatory drugs, and morphine, the incidence of adverse effects was not increased.
Dipyrone can be recommended for the treatment of cancer pain as an alternative to other non-opioids either alone or in combination with opioids. It can be preferred over non-steroidal anti-inflammatory drugs due to the presumably favorable side effect profile in long-term use, but comparative studies are not available for long-term use.
To establish preliminary evidence for the feasibility, acceptability, and utility of an abbreviated version of Meaning-Centered Psychotherapy tailored to the needs of palliative care patients in the final weeks or months of life.
Surprisingly, few mental health interventions have specifically targeted the psychological needs of palliative care patients, when physical comfort seems to take precedence over mental health and emotional needs. Yet the need for mental health services targeting these patients is clear, as one in three palliative care patients experience clinically significant depression and an equal proportion experience clinically significant anxiety.
This pilot study used an open-label design to assess the feasibility, acceptability, and perceived utility of Meaning-Centered Psychotherapy–palliative care, a brief intervention that focuses on enhancing meaning at the end of life.
A total of 12 patients admitted to a palliative care hospital for supportive care consented to participate in the study.
Of the 11 patients that began treatment (one patient died before the first session), 8 completed the three-session intervention. Patients expressed positive feedback about the structure, focus, and length of the intervention, but varied in precisely which elements they found most helpful.
An abbreviated version of Meaning-Centered Psychotherapy tailored to the needs of palliative care patients (Meaning-Centered Psychotherapy–palliative care) appears to be feasible, acceptable, and has the potential to help patients better cope with the challenges inherent in confronting death and dying. Further research, with larger and more representative samples, is needed in order to clarify the strengths and weaknesses of this approach.
Unused medicines represent a major source of wastage in healthcare systems around the world. Previous studies have suggested the potential cost savings from recycling the waste medicines. However, issues of product safety and integrity often deter healthcare institutions from recycling donated medications.
To evaluate the feasibility of medication recycling and to assess the actual cost savings from recycling waste medicines and whether reusability of waste medicines differed among various drug classes and donor sources.
Donated medications from hospitals, private medical clinics and patients were collected and assessed using a medication recycling protocol in a hospice care setting from November 2013 through January 2014. Costs were calculated using a reference pricing list from a public hospital.
A total of 244 donations, amounting to 20,759 dosage units, were collected during the study period. Most donations (90.8%) were reusable, providing a total of S$5266 in cost savings. Less than 2 h daily was spent by a single pharmacy technician on the sorting and distributing processes. Medications donated by health facilities were thrice more likely to be reusable than those by patients (odds ratio = 3.614, 95% confidence interval = 3.127, 4.176). Medications belonging to Anatomical Therapeutic Chemical class G (0.0%), H (8.2%) and L (30.0%) were the least reusable.
Most donated medications were reusable. The current protocol can be further streamlined to focus on the more reusable donor sources and drug classes and validated in other settings. Overall, we opine that it is feasible to practise medication recycling on a larger scale to reduce medication wastage.
The McGill Quality of Life Questionnaire has been widely used with people with life-threatening illnesses without modification since its publication in 1996. With use, areas for improvement have emerged; therefore, various minor modifications were tested over time.
To revise the McGill Quality of Life Questionnaire (McGill Quality of Life Questionnaire–Revised) while maintaining or improving its psychometric properties and length, keeping it as close as possible to the McGill Quality of Life Questionnaire to enable reasonable comparison with existing McGill Quality of Life Questionnaire literature.
Data sets from eight studies were used (four studies originally used to develop the McGill Quality of Life Questionnaire, two to develop new McGill Quality of Life Questionnaire versions, and two with unrelated purposes). The McGill Quality of Life Questionnaire–Revised was developed using analyses of measurement invariance, confirmatory factor analysis, and calculation of correlations with the McGill Quality of Life Questionnaire’s global quality of life item.
Data were from 1702 people with life-threatening illnesses recruited from acute and palliative care units, palliative home care services, and oncology and HIV/AIDS outpatient clinics.
The McGill Quality of Life Questionnaire–Revised consists of 14 items (plus the global quality of life item). A new Physical subscale was created combining physical symptoms and physical well-being and a new item on physical functioning. The Existential subscale was reduced to four items. The revised Support subscale, renamed Social, focuses more on relationships. The Psychological subscale remains unchanged. Confirmatory factor analysis results provide support for the measurement structure of the McGill Quality of Life Questionnaire–Revised. The overall scale has good internal consistency reliability (α = 0.94).
The McGill Quality of Life Questionnaire–Revised improves on and can replace the McGill Quality of Life Questionnaire since it contains improved wording, a somewhat expanded repertoire of concepts with fewer items, and a single subscale for the physical domain, while retaining good psychometric properties.
Changes in activities of daily living in cancer patients may predict their survival. The Palliative Prognostic Index is a useful tool to evaluate cancer patients, and adding an item about activities of daily living changes might improve its predictive value.
To clarify whether adding an item about activities of daily living changes improves the accuracy of Palliative Prognostic Index.
Multicenter prospective cohort study.
A total of 58 palliative care services in Japan.
Patients aged >20 years diagnosed with locally extensive or metastatic cancer (including hematological neoplasms) who had been admitted to palliative care units, were receiving care by hospital-based palliative care teams, or were receiving home-based palliative care. Palliative care physicians recorded clinical variables at the first assessment and followed up patients 6 months later.
A total of 2425 subjects were recruited and 2343 of these had analyzable data. The C-statistic of the original Palliative Prognostic Index was 0.801, and those of modified Palliative Prognostic Indices ranged from 0.793 to 0.805 at 3 weeks. For 6-week survival predictions, the C-statistic of the original Palliative Prognostic Index was 0.802, and those of modified Palliative Prognostic Indices ranged from 0.791 to 0.799. The weighted kappa of the original Palliative Prognostic Index was 0.510, and those of modified Palliative Prognostic Indices ranged from 0.484 to 0.508.
Adding items about activities of daily living changes to the Palliative Prognostic Index did not improve prognostic value in advanced cancer patients.
Although the acute hospital setting is not considered to be an ideal place of death, many people are admitted to hospital at the end of life.
To examine what proportion of terminal hospital admissions among their patients family physicians consider to have been avoidable and/or inappropriate; which patient, family physician and admission factors are associated with the perceived inappropriateness or avoidability of terminal hospital admissions; and which interventions could have prevented them, from the perspective of family physicians.
Survey among family physicians, linked to medical record data.
Patients who had died non-suddenly in the acute hospital setting of a university hospital in Belgium between January and August 2014.
We received 245 completed questionnaires (response rate 70%) and 77% of those hospital deaths (n = 189) were considered to be non-sudden. Almost 14% of all terminal hospital admissions were considered to be potentially inappropriate, almost 14% potentially avoidable and 8% both, according to family physicians. The terminal hospital admission was more likely to be considered potentially inappropriate or potentially avoidable for patients who had died of cancer, when the patient’s life expectancy at the time of admission was limited, by family physicians who had had palliative care training at basic, postgraduate or post-academic level, and when the admission was initiated by the patient, partner or other family.
Timely communication with the patient about their limited life expectancy and the provision of better support to family caregivers may be important strategies in reducing the number of hospital deaths.
Communication between parents and their children about parental life-limiting illness is stressful. Parents want support from health-care professionals; however, the extent of this support is not known. Awareness of family’s needs would help ensure appropriate support.
To find the current literature exploring (1) how parents with a life-limiting illness, who have dependent children, perceive health-care professionals’ communication with them about the illness, diagnosis and treatments, including how social, practical and emotional support is offered to them and (2) how this contributes to the parents’ feelings of supporting their children.
A systematic literature review and narrative synthesis.
Embase, MEDLINE, PsycINFO, CINAHL and ASSIA ProQuest were searched in November 2015 for studies assessing communication between health-care professionals and parents about how to talk with their children about the parent’s illness.
There were 1342 records identified, five qualitative studies met the inclusion criteria (55 ill parents, 11 spouses/carers, 26 children and 16 health-care professionals). Parents wanted information from health-care professionals about how to talk to their children about the illness; this was not routinely offered. Children also want to talk with a health-care professional about their parents’ illness. Health-care professionals are concerned that conversations with parents and their children will be too difficult and time-consuming.
Parents with a life-limiting illness want support from their health-care professionals about how to communicate with their children about the illness. Their children look to health-care professionals for information about their parent’s illness. Health-care professionals, have an important role but appear reluctant to address these concerns because of fears of insufficient time and expertise.
Research indicates that women are the primary family caregivers for others at life’s end and, because of ageing populations, will keep fulfilling this role as they age. Yet, little is known about how the gendered nature of caregiving contributes to older women’s understandings of providing care.
To explore how gender norms constructed older women’s views about the appropriate roles of women and men in providing palliative and end-of-life care for family members.
Six focus groups were conducted with 39 community dwelling older adults (36 women and 3 men) using two vignettes to prompt discussion about experience of end of life caring and attitudes towards Advance Care Planning. This article reports on data gathered from female participants’ reactions to Vignette 1 which prompted significant discussion regarding the intersection of gender and older women’s caregiving experience.
A total of 36 women in the age ranges of ‘50–59 years’ through to ‘90–99 years’ from New Zealand.
Three themes regarding gender and caregiving were identified: the expectation women will care, women’s duty to care and women’s construction of men in relation to caregiving and illness. The women adhered to stereotypical gender norms that regard women as primary caregivers. There was little connection between the burden they associated with caregiving and this gender construction.
The expectation that older women will provide end-of-life care even when experiencing considerable burden is an unacknowledged outcome of gender norms that construct women as caregivers.
Little population-level information exists about the delivery of palliative care across multiple health sectors, important in providing a complete picture of current care and gaps in care.
Provide a population perspective on end-of-life palliative care delivery across health sectors.
Retrospective population-level cohort study, describing palliative care in the last year of life using linked health administrative databases.
All decedents in Ontario, Canada, from 1 April 2010 to 31 March 2012 (n = 177,817).
Across all health sectors, about half (51.9%) of all decedents received at least one record of palliative care in the last year of life. Being female, middle-aged, living in wealthier and urban neighborhoods, having cancer, and less multi-morbidity were all associated with higher odds of palliative care receipt. Among 92,276 decedents receiving palliative care, 84.9% received care in acute care hospitals. Among recipients, 35 mean days of palliative care were delivered. About half (49.1%) of all palliative care days were delivered in the last 2 months of life, and half (50.1%) had palliative care initiated in this period. Only about one-fifth of all decedents (19.3%) received end-of-life care through publicly funded home care. Less than 10% of decedents had a record of a palliative care home visit from a physician.
We describe methods to capture palliative care using administrative data. Despite an estimate of overall reach (51.9%) that is higher than previous estimates, we have shown that palliative care is infrequently delivered particularly in community settings and to non-cancer patients and occurs close to death.
Communication skills are important when discussing goals of care and resuscitation. Few studies have evaluated the effectiveness of standardized patients for teaching medical trainees to communicate about goals of care.
To determine whether standardized patient simulation offers benefit over didactic sessions alone for improving skill and comfort discussing goals of care.
Single-blind, randomized, controlled trial of didactic teaching plus standardized patient simulation versus didactic teaching alone.
First-year internal medicine residents.
Changes in communication comfort and skill between baseline and 2 months post-training assessed using the Consultation and Relational Empathy measure.
We enrolled 94 residents over a 2-year period. Both groups reported a significant improvement in comfort when discussing goals of care with patients. There was no difference in Consultation and Relational Empathy scores following the workshop (p = 0.79). The intervention group showed a significant increase in Consultation and Relational Empathy scores post-workshop compared with pre-workshop (35.0 vs 31.7, respectively; p = 0.048), whereas there was no improvement in Consultation and Relational Empathy scores in the control group (35.6 vs 36.0; p = 0.4). However, when the results were adjusted for baseline differences in Consultation and Relational Empathy scores in a multivariable regression analysis, group assignment was not associated with an improvement in Consultation and Relational Empathy score. Improvement in comfort scores and perception of benefit were not associated with improvements in Consultation and Relational Empathy scores.
Simulation training may improve communication skill and comfort more than didactic training alone, but there were important confounders in this study and further studies are needed to determine whether simulation is better than didactic training for this purpose.
Stakeholders are people with an interest in a topic. Internationally, stakeholder involvement in palliative care research and health technology assessment requires development. Stakeholder involvement adds value throughout research (from prioritising topics to disseminating findings). Philosophies and understandings about the best ways to involve stakeholders in research differ internationally. Stakeholder involvement took place in seven countries (England, Germany, Italy, Lithuania, the Netherlands, Norway and Poland). Findings informed a project that developed concepts and methods for health technology assessment and applied these to evaluate models of palliative care service delivery.
To report on stakeholder involvement in the INTEGRATE-HTA project and how issues identified informed project development.
Using stakeholder consultation or a qualitative research design, as appropriate locally, stakeholders in seven countries acted as ‘advisors’ to aid researchers’ decision making. Thematic analysis was used to identify key issues across countries.
A total of 132 stakeholders (82 professionals and 50 ‘lay’ people) aged >=18 participated in individual face-to-face or telephone interviews, consultation meetings or focus groups.
Different stakeholder involvement methods were used successfully to identify key issues in palliative care. A total of 23 issues common to three or more countries informed decisions about the intervention and comparator of interest, sub questions and specific assessments within the health technology assessment.
Stakeholders, including patients and families undergoing palliative care, can inform project decision making using various involvement methods according to the local context. Researchers should consider local understandings about stakeholder involvement as views of appropriate and feasible methods vary. Methods for stakeholder involvement, especially consultation, need further development.
Few studies have examined the process and impact of an advance care planning intervention experienced by surrogate decision-makers of dialysis patients.
To explore the perspectives of the bereaved surrogates of dialysis patients on the process and impact of an advance care planning intervention and to compare the perceived impacts of the intervention between African Americans and Whites.
Qualitative interviews and thematic analysis.
24 bereaved surrogates of patients from outpatient dialysis centers were interviewed. Both patients and surrogates had been participants in a larger efficacy study and had received an advance care planning intervention, SPIRIT (Sharing Patient’s Illness Representations to Increase Trust).
Two themes related to the process of SPIRIT were as follows: (1) SPIRIT provided a welcome opportunity to think about and discuss topics that had been avoided and (2) SPIRIT helped patients and surrogates to share their feelings. Four themes of the SPIRIT’s impact were as follows: (1) SPIRIT was an eye-opening experience, acquiring knowledge and understanding of the patient’s illness and end-of-life care, (2) SPIRIT helped strengthen relationships between patients and surrogates, (3) SPIRIT helped surrogates feel prepared during the time leading up to end-of-life decision-making, and (4) SPIRIT helped surrogates have peace of mind during and after actual end-of-life decision-making. Themes related to SPIRIT’s impact on feeling prepared for end-of-life decision-making and the actual decision-making experience more frequently occurred in African Americans than in Whites.
Our data may help explain the beneficial effects of SPIRIT on surrogates, but future trials should include data on control surrogates’ perspectives.
End-of-life care affects both the patient and those close to them. Typically, those close to the patient are not considered within economic evaluation, which may lead to the omission of important benefits resulting from end-of-life care.
To develop an outcome measure suitable for use in economic evaluation that captures the benefits of end-of-life care to those close to the dying.
To develop the descriptive system for the outcome measure, in-depth qualitative interviews were conducted with the participants and constant comparative analysis methods were used to develop a descriptive system for the measure.
Twenty-seven individuals bereaved within the last 2 years or with a close-person currently receiving end-of-life care were purposively recruited into the study. Participants were recruited through newsletters, adverts, snowball sampling and a local hospice.
Twenty-seven individuals were recruited. A measure of capability with six attributes, each with five levels, was developed based on themes arising from the analysis. Attributes comprise the following:
This measure is designed to capture the benefits of end-of-life care to close-persons for use in economic evaluation. Further research should value the measure and develop methods for incorporating outcomes for close-persons into economic evaluation.
Homeless individuals have a high prevalence of multiple chronic comorbidities and early mortality compared to the general population. They also experience significant barriers to access and stigmatization in the healthcare system. Providing advance care planning, palliative care, and end-of-life care for this underserved population is an important health issue.
To summarize and evaluate the evidence surrounding advance care planning, palliative care, and end-of-life care interventions for homeless persons.
A systematic review based on the Preferred Reporting Items for Systematic Reviews and Meta-Analyses statement.
Articles from MEDLINE, EMBASE, CINAHL, PsycINFO, Social Work Abstracts, Cochrane Library, Web of Science, and PubMed databases were searched through 13 June 2015. Peer-reviewed studies that implemented advance care planning, palliative care, and end-of-life care interventions for homeless populations were included. Data from studies were independently extracted by two investigators using pre-specified criteria, and quality was assessed using modified Cochrane and Critical Appraisal Skills Programme tools.
Six articles met inclusion criteria. Two studies were randomized controlled trials involving advance directive completion. Two cohort studies investigated the costs of a shelter-based palliative care intervention and predictors for completing advance directives. These studies were rated low to fair quality. Two qualitative studies explored the interface between harm-reduction services and end-of-life care and the conditions for providing palliative care for homeless persons in a support home.
The effectiveness of advance care planning, palliative care, and end-of-life care interventions for homeless individuals is uncertain. High-quality studies of interventions that reflect the unique and complex circumstances of homeless populations and investigate patient-related outcomes, caregiver burden, and cost-effectiveness are needed.
The number of children worldwide requiring palliative care services is increasing due to advances in medical care and technology. The use of outcome measures is important to improve the quality and effectiveness of care.
To systematically identify health-related quality-of-life outcome measures that could be used in paediatric palliative care and examine their feasibility of use and psychometric properties.
A systematic literature review and analysis of psychometric properties.
PsychInfo, Medline and EMBASE were searched from 1 January 1990 to 10 December 2014. Hand searches of the reference list of included studies and relevant reviews were also performed.
From 3460 articles, 125 papers were selected for full-text assessment. A total of 41 articles met the eligibility criteria and examined the psychometric properties of 22 health-related quality-of-life measures. Evidence was limited as at least half of the information on psychometric properties per instrument was missing. Measurement error was not analysed in any of the included articles and responsiveness was only analysed in one study. The methodological quality of included studies varied greatly.
There is currently no ‘ideal’ outcome assessment measure for use in paediatric palliative care. The domains of generic health-related quality-of-life measures are not relevant to all children receiving palliative care and some domains within disease-specific measures are only relevant for that specific population. Potential solutions include adapting an existing measure or developing more individualized patient-centred outcome and experience measures. Either way, it is important to continue work on outcome measurement in this field.
In Asian societies including Pakistan, a complex background of illiteracy, different familial dynamics, lack of patient’s autonomy, religious beliefs, and financial constraints give new dimensions to code status discussion. Barriers faced by physicians during code status discussion in these societies are largely unknown.
To determine the barriers and perceptions in discussion of code status by physicians.
Questionnaire-based cross-sectional study.
This study was conducted in the Department of Medicine of The Aga Khan University Hospital, Karachi, Pakistan. A total of 134 physicians who had discussed at least five code statuses in their lifetime were included.
A total of 77 (57.4%) physicians responded. Family-related barriers were found to be the most common barriers. They include family denial (74.0%), level of education of family (66.2%), and conflict between individual family members (66.2%). Regarding personal barriers, lack of knowledge regarding prognosis (44.1%), personal discomfort in discussing death (29.8%), and fear of legal consequences (28.5%) were the top most barriers. In hospital-related barriers, time constraint (57.1%), lack of hospital administration support (48.0%), and suboptimal nursing care after do not resuscitate (48.0%) were the most frequent. There were significant differences among opinions of trainees when compared to those of attending physicians.
Family-related barriers are the most frequent roadblocks in the end-of-life care discussions for physicians in Pakistan. Strengthening communication skills of physicians and family education are the potential strategies to improve end-of-life care. Large multi-center studies are needed to better understand the barriers of code status discussion in developing countries.
Policy guidance and bioethical literature urge the involvement of adolescents in decisions about their healthcare. It is uncertain how roles and expectations of adolescents, parents and healthcare professionals influence decision-making and to what extent this is considered in guidance.
To identify recent empirical research on decision-making regarding care and treatment in adolescent cancer: (1) to synthesise evidence to define the role of adolescents, parents and healthcare professionals in the decision-making process and (2) to identify gaps in research.
A narrative systematic review of qualitative, quantitative and mixed-methods research. We adopted a textual approach to synthesis, using a theoretical framework of interactionism to interpret findings.
The databases MEDLINE, PsycINFO, SCOPUS, EMBASE and CINHAL were searched from 2001 through May 2015 for publications on decision-making for adolescents (13–19 years) with cancer.
Twenty-eight articles were identified. Adolescents and parents initially find it difficult to participate in decision-making due to a lack of options in the face of protocol-driven care. Parent and adolescent preferences for information and response to loss of control vary between individuals and over time. No studies indicate parental or adolescent preference for a high degree of independence in decision-making.
Striving to make parents and adolescents fully informed or urge them towards more independence than they prefer may add to distress and confusion. This may interfere with their ability to participate in their preferred way in decisions about care and treatment. Future research should include analysis of on-ground interactions among parents, adolescents and clinicians across the trajectory.
Enabling patients to die in their preferred place is important but achieving preferred place of death may increase the informal carer’s risk into bereavement.
To determine risk factors of family carers bereaved through cancer in Northern Ireland.
These results form part of a larger QUALYCARE-NI study which used postal questionnaires to capture quantitative data on carer’s bereavement scores using the Texas Revised Inventory of Grief.
Participants were individuals who registered the death of a person between 1 December 2011 and 31 May 2012; where cancer (defined by ICD10 codes C00-D48) was the primary cause; where the deceased was over 18 years of age and death occurred at home, hospice, nursing home or hospital in Northern Ireland. Participants were approached in confidence by the Demography and Methodology Branch of the Northern Ireland Statistics and Research Agency. Those wishing to decline participation were invited to return the reply slip. Non-responders received a second questionnaire 6 weeks after initial invitation. Results indicated that risk factors positively influencing bereavement outcomes included patients having no preference for place of death and carers remaining in employment pre- or post-bereavement. In contrast, patients dying in hospital, carers stopping work, being of lower socio-economic status and close kinship to the deceased negatively affected bereavement scores. Family carers should be adequately supported to continue in employment; priority should be given to assessing the financial needs of families from lower socio-economic areas; and bereavement support should focus on close relatives of the deceased.
Palliative care is based on multi-professional team work. In this study, we investigated how cleaning staff communicate and interact with seriously ill and dying patients as well as how cleaning staff cope with the situation of death and dying.
Sequential mixed methods, consisting of semi-structured interviews, focus groups, and a questionnaire. Interviews and focus group discussions were content analyzed and results were used to create a questionnaire. Quantitative data were submitted to descriptive analysis.
Large university clinic in southern Germany.
A total of 10 cleaning staff participated in the interviews and 6 cleaning staff took part in the focus group discussion. In addition, three managerial cleaning staff participated in a separate focus group. Questionnaires were given to all cleaning staff (n = 240) working at the clinic in September 2008, and response rate was 52% (125/240).
Cleaning staff described interactions with patients as an important and fulfilling aspect of their work. About half of participants indicated that patients talk with them every day, on average for 1–3 min. Conversations often revolved around casual topics such as weather and family, but patients also discussed their illness and, occasionally, thoughts regarding death with cleaning staff. When patients addressed illness and death, cleaning staff often felt uncomfortable and helpless.
Cleaning staff perceive that they have an important role in the clinic—not only cleaning but also supporting patients. Likewise, patients appreciate being able to speak openly with cleaning staff. Still, it appears that cleaning staff may benefit from additional training in communication about sensitive issues such as illness and death.
Uncertainty is common in advanced illness but is infrequently studied in this context. If poorly addressed, uncertainty can lead to adverse patient outcomes.
We aimed to understand patient experiences of uncertainty in advanced illness and develop a typology of patients’ responses and preferences to inform practice.
Secondary analysis of qualitative interview transcripts. Studies were assessed for inclusion and interviews were sampled using maximum-variation sampling. Analysis used a thematic approach with 10% of coding cross-checked to enhance reliability.
Qualitative interviews from six studies including patients with heart failure, chronic obstructive pulmonary disease, renal disease, cancer and liver failure.
A total of 30 transcripts were analysed. Median age was 75 (range, 43–95), 12 patients were women. The impact of uncertainty was frequently discussed: the main related themes were engagement with illness, information needs, patient priorities and the period of time that patients mainly focused their attention on (temporal focus). A typology of patient responses to uncertainty was developed from these themes.
Uncertainty influences patient experience in advanced illness through affecting patients’ information needs, preferences and future priorities for care. Our typology aids understanding of how patients with advanced illness respond to uncertainty. Assessment of these three factors may be a useful starting point to guide clinical assessment and shared decision making.
Staff who provide end-of-life care to children not only have to deal with their own sense of loss but also that of bereaved families. There is a dearth of knowledge on how they cope with these challenges.
The aim of this review is to explore the experiences of healthcare professionals who provide end-of-life care to children in order to inform the development of interventions to support them, thereby improving the quality of paediatric care for both children and their families.
Searches included CINAHL, MEDLINE, Web of Science, EMBASE, PsychINFO and The Cochrane Library in June 2015, with no date restrictions. Additional literature was uncovered from searching reference lists of relevant studies, along with contacting experts in the field of paediatric palliative care.
This was a systematic mixed studies review. Study selection, appraisal and data extraction were conducted by two independent researchers. Integrative thematic analysis was used to synthesise the data.
The 16 qualitative, 6 quantitative and 8 mixed-method studies identified included healthcare professionals in a range of settings. Key themes identified rewards and challenges of providing end-of-life care to children, the impact on staff’s personal and professional lives, coping strategies and key approaches to help support staff in their role.
Education focusing on the unique challenges of providing end-of-life care to children and the importance of self-care, along with timely multidisciplinary debriefing, are key strategies for improving healthcare staff’s experiences, and as such the quality of care they provide.
Research on the costs of healthcare provision has so far focused on insurer costs rather than out-of-pocket costs. Out-of-pocket costs may be important to patients making medical decisions.
To investigate the self-reported out-of-pocket costs associated with healthcare in the last year of life of older adults in Europe.
A post-death survey, part of the Survey of Health, Ageing, and Retirement in Europe, completed by proxy respondents in four waves from 2005 to 2012.
Proxy respondents for 2501 deceased adults of 55 years or over. Data from 13 European countries and four waves from 2005 to 2012 were used.
The proportion of people with out-of-pocket costs ranged from 21% to 96% in different European Union countries. Out-of-pocket costs ranged from 2% to 25% of median household income. Secondary and institutional care was most often the largest contributor to out-of-pocket costs, with care received in a care home being the most expensive type of care in 11 of 13 countries. Multilevel analyses showed that limitations in more than two activities of daily living (coefficient = 6.47, 95% confidence interval = 1.81–11.14) and a total hospitalization time of 3–6 months (coefficient = 14.66; 95% confidence interval = 0.97–28.35) or more than 6 months (coefficient = 31.01; 95% confidence interval = 11.98–50.15) were associated with higher out-of-pocket costs. In total, 24% of the variance on a country level remained unexplained.
Variation in out-of-pocket costs for healthcare in the last year of life between European countries indicates that countries face different challenges in making healthcare in the last year of life affordable for all.
Care relationships are crucial in tailoring the end-of-life care of a person with intellectual disabilities (ID) to their needs. Yet, almost all studies on end-of-life care for people with ID have been conducted among caregivers. The views of people with ID about care relationships at the end of life have not been a specific focus of research.
To explore relevant dimensions of the care relationships in end-of-life care from the perspectives of people with mild ID in the Netherlands.
Group interviews were conducted using nominal group technique. Interviews were inductively analysed by two researchers.
Seven groups participated (33 people). Inclusion criteria were as follows: having mild ID, being able to decide about participation and give informed consent, and not receiving end-of-life care. All groups were interviewed twice.
Two dimensions of care relationships were found: (1) ‘Ascertain, record and honour wishes’ of the ill person. Adequately dealing with care wishes, ‘last wishes’ and funeral wishes was of central importance: ‘it’s about their life’. We found an emphasis on control that seemed to reflect the participants’ experience that respecting autonomy does not always happen. (2) ‘Being there’: Ill people need people who are there for him or her, practically, as well as emotionally, socially and spiritually. Participants placed specific emphasis on providing positive experiences.
The views of people with mild ID highlight the high demands which end-of-life care imposes on relational qualities of caregivers. This study shows the added value and potential of involving people with ID in studies on end-of-life care.
Bisphosphonates and denosumab are well-established therapies to reduce the frequency and severity of skeletal-related events in patients with bone metastasis. However, the analgesic effect of these medications on bone pain is uncertain.
To identify, critically appraise and synthesize existing evidence to answer the following questions: ‘In adult patients with metastatic bone pain, what is the evidence that bisphosphonates and denosumab are effective and safe in controlling pain?’ and ‘What is the most appropriate schedule of bisphosphonate/denosumab administration to control bone pain?’. This review also updates the 2002 Cochrane review ‘Bisphosphonates for the relief of pain secondary to bone metastases’.
Standard systematic review and narrative synthesis.
MEDLINE, EMBASE and Cochrane CENTRAL databases were searched for relevant articles published through 31 January 2014. A manual search was also performed. Study inclusion criteria were: a) conducted in adult patients; b) randomized controlled trial or meta-analisys; c) reported efficacy of bisphosphonates or denosumab on pain and/or decribed side effects versus placebo or other bisphosphonate; and d) English language.
The database search yielded 1585 studies, of which 43 (enrolling 8595 and 7590 patients, respectively, in bisphosphonate and denosumab trials) met the inclusion criteria. Twenty-two (79%) of the 28 placebo-controlled trials found no analgesic benefit for bisphosphonates. None of the denosumab studies assessed direct pain relief.
Evidence to support an analgesic role for bisphosphonates and denosumab is weak. Bisphosphonates and denosumab appear to be beneficial in preventing pain by delaying the onset of bone pain rather than by producing an analgesic effect per se.
Socially excluded populations have poorer access to care; however, little attention has been paid to lesbian, gay, bisexual and/or trans* people. Lesbian, gay, bisexual and/or trans* people are at increased risk of certain life-limiting illnesses and may not receive the care and support they need at the end of life and into bereavement.
To identify and appraise the evidence of the bereavement experiences of lesbian, gay, bisexual and/or trans* people who have lost a partner and develop an explanatory model of lesbian, gay, bisexual and/or trans* partner bereavement.
Systematic review (in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines) and thematic synthesis with assessment of reporting and rigour. Quantitative or qualitative articles reporting bereavement experiences of lesbian, gay, bisexual and/or trans* partners were included, excluding articles reporting multiple losses in the context of HIV or AIDS.
PsycINFO, MEDLINE, Web of Science, Scopus, Cochrane Library. Inclusion dates: database inception – 30 April 2015.
A total of 23 articles reporting on 13 studies were identified. Studies described universal experiences of the pain of losing a partner; however, additional barriers and stressors were reported for lesbian, gay, bisexual and/or trans* people, including homophobia, failure to acknowledge the relationship, additional legal and financial issues and the ‘shadow’ of HIV or AIDS. A novel model was developed to explain how the experience for lesbian, gay, bisexual and/or trans* people is shaped by whether the relationship was disclosed and acknowledged in life and into bereavement and how this impacts upon needs and access to care.
There is a need for healthcare providers to avoid hetero-normative assumptions; be mindful of additional stressors in bereavement for lesbian, gay, bisexual and/or trans* people; and consider additional sources of support to deliver individualised holistic care.
Little is known about cystic fibrosis patients, who are not considered to be terminally ill, and who die after voluntary cessation of treatment.
This study was undertaken to provide an international snapshot of this issue.
An online survey was distributed across three continents.
Distribution to the medical directors of the cystic fibrosis centres affiliated with the US Cystic Fibrosis Foundation, Cystic Fibrosis Australia (inclusion of New Zealand) and to every clinician member of the European Cystic Fibrosis Society.
More than 200 cystic fibrosis patients not considered to be terminally ill and, who voluntarily ceased treatment, were reported by the clinicians surveyed. Detailed data were reported in 102 patients (4 children, 25 adolescents and 73 adults). Only one child, six adolescents and one adult were judged by clinicians not to be competent to make the decision to stop treatment. Time-consuming and low immediate-impact therapies, such as respiratory physiotherapy, were most frequently discontinued. Resignation was the main reported reason for discontinuing treatment, followed by reactive depression and lack of familial support. A total of 69% of the patients received palliative care and 72% died in the 6 months following cessation of treatment.
Death of cystic fibrosis patients, not considered to be terminally ill, is reported in Europe, the United States and Australia due to voluntary cessation of treatment.
Hospitalizations in patients with metastatic cancer occur commonly at the end of life but have not been well-described in individuals with metastatic breast cancer.
To describe the reasons for admission and frequency of palliative care and hospice utilization in hospitalized patients with metastatic breast cancer.
This was a retrospective chart review of patients who had their first hospitalization with a diagnosis of metastatic breast cancer between 1 January 2009 and 31 December 2010. To standardize follow-up time, we collected data for 3 years post the index hospitalization.
We identified 123 consecutive patients who were hospitalized for the first time with a diagnosis of metastatic breast cancer at a single, tertiary care center.
Uncontrolled symptoms accounted for half (50%, 62/123) of index admissions. The majority of patients died during the follow-up period (76%, 94/123), and the median time from index admission to death was 6 months (range: 0–34 months). Approximately half (53%, 50/94) died in the hospital or within 14 days of last hospital discharge, and less than one-third (29%, 27/94) were referred to hospice after their last hospitalization. The inpatient palliative care team evaluated 57% (54/94) of those who died at least once during an admission, but only 17% (16/94) of patients attended an outpatient palliative care appointment.
Hospitalized patients with metastatic breast cancer are commonly admitted for uncontrolled symptoms and have a poor prognosis. However, only a minority receive outpatient palliative care or are referred to hospice during their last hospitalization prior to death.
Staff in palliative care settings perform emotionally demanding roles which may lead to psychological distress including stress and burnout. Therefore, interventions have been designed to address these occupational risks.
To investigate quantitative studies exploring the effectiveness of psychosocial interventions that attempt to improve psychological wellbeing of palliative care staff.
A systematic review was conducted according to methodological guidance from UK Centre for Reviews and Dissemination.
A search strategy was developed based on the initial scans of palliative care studies. Potentially eligible research articles were identified by searching the following databases: CINAHL, MEDLINE (Ovid), PsycINFO and Web of Science. Two reviewers independently screened studies against pre-set eligibility criteria. To assess quality, both researchers separately assessed the remaining studies using the Quality Assessment Tool for Quantitative Studies.
A total of 1786 potentially eligible articles were identified – nine remained following screening and quality assessment. Study types included two randomised controlled trials, two non-randomised controlled trial designs, four one-group pre–post evaluations and one process evaluation. Studies took place in the United States and Canada (5), Europe (3) and Hong Kong (1). Interventions comprised a mixture of relaxation, education, support and cognitive training and targeted stress, fatigue, burnout, depression and satisfaction. The randomised controlled trial evaluations did not improve psychological wellbeing of palliative care staff. Only two of the quasi-experimental studies appeared to show improved staff wellbeing although these studies were methodologically weak.
There is an urgent need to address the lack of intervention development work and high-quality research in this area.
There have been many studies on the actual and preferred place of care and death of palliative patients; however, most have been whole population surveys and/or urban focused. Data and preferences for terminally ill rural patients and their unofficial carers have not been systematically described.
To describe the actual place of death and preferred place of care and/or death in rural palliative care settings.
A systematic mixed studies review using Preferred Reporting Items for Systematic Reviews and Meta-Analysis guidelines.
PubMed, PsychINFO, Scopus and CINAHL databases were searched (September to December 2014); eligible quantitative and qualitative studies included preferred and/or actual place of death/care of rural, regional or remote residents; rural data that are clearly identifiable; death due to palliative condition (malignant and non-malignant) or survey of participants with current or hypothetical life-limiting illness.
A total of 25 studies described actual place of death; 12 preferred place of care or death (2 studies reported both); most deaths occurred in hospital with home as the preferred place of care/death; however qualitative studies suggest that preferences are not absolute; factors associated with place are not adequately described as rurality was an independent variable; significant heterogeneity (rural setting and participants), however, many areas had a greater chance of home death than in cities; rural data are embedded in population reports rather than from specific rural studies.
Home is the preferred place of rural death; however, more work is needed to explore influencing factors, absolute importance of preferences and experience of providing and receiving palliative care in rural hospitals which often function as substitute hospice.
Palliative care services were not available in nursing homes in Singapore. Project CARE (Care At the end-of-life for Residents in homes for the Elderly) was a pilot programme that aimed to promote advance care planning and improve end-of-life care in nursing homes.
We aimed to examine end-of-life care preferences among nursing home residents, and identify factors associated with preference for medical intervention, cardiopulmonary resuscitation and place of death.
A cross-sectional study using data from advance care planning discussions was conducted from September 2009 to April 2012 across seven nursing homes. The advance care planning discussion was conducted with the resident (with a prognosis of 6 months or 1 year), their families and staff from the nursing home and hospital.
A total of 600 residents and their families completed the advance care planning discussion. Majority (93.2%) preferred not to proceed with cardiopulmonary resuscitation, 52.3% opted for limited additional intervention at the nursing home with escalation to the hospital if necessary and 77.0% preferred to die at the nursing home. Residents 85+ years (relative risk ratio: 3.34, 95% confidence interval: 1.13–9.93, p = 0.030) were more likely to prefer medical intervention at the nursing home only. No associations were found with the preference for cardiopulmonary resuscitation. Residents who were single, or who were Christians or Catholics (adjusted odds ratio: 2.09, 95% confidence interval: 1.04–4.19, p = 0.039), were more likely to prefer to die at the nursing home.
Preferences for medical interventions in nursing homes provide support to extend palliative care services to nursing homes, which may benefit residents who are older, single, or Christians or Catholics.
Administration of non-beneficial life-sustaining treatments in terminal elderly patients still occurs due to lack of knowledge of patient’s wishes or delayed physician–family communications on preference.
To determine whether advance care documentation encourages healthcare professional’s timely engagement in end-of-life discussions.
Systematic review of the English language articles published from January 2000 to April 2015.
EMBASE, MEDLINE, EBM REVIEWS, PsycINFO, CINAHL and Cochrane Library and manual searches of reference lists.
A total of 24 eligible articles from 10 countries including 23,914 subjects met the inclusion criteria, mostly using qualitative or mixed methods, with the exception of two cohort studies. The influence of advance care documentation on initiation of end-of-life discussions was predominantly based on perceptions, attitudes, beliefs and personal experience rather than on standard replicable measures of effectiveness in triggering the discussion. While health professionals reported positive perceptions of the use of advance care documentations (18/24 studies), actual evidence of their engagement in end-of-life discussions or confidence gained from accessing previously formulated wishes in advance care documentations was not generally available.
Perceived effectiveness of advance care documentation in encouraging end-of-life discussions appears to be high but is mostly derived from low-level evidence studies. This may indicate a willingness and openness of patients, surrogates and staff to perceive advance directives as an instrument to improve communication, rather than actual evidence of timeliness or effectiveness from suitably designed studies. The assumption that advance care documentations will lead to higher physicians’ confidence or engagement in communicating with patients/families could not be objectively demonstrated in this review.
Experiential studies in paediatric palliative care are needed to enable an ongoing international agenda which supports the development of responsive family supports.
To provide an in-depth exploration of the prevalent lived experiences of parents who are currently providing care for a child with a life-limiting condition in Australia.
Cross-sectional, prospective, qualitative study guided by an advisory group and reported according to the consolidated criteria for reporting qualitative studies. Transcripts were subjected to a thematic analysis, underpinned by an interpretative phenomenological framework.
Purposively sampled parents (n = 14) recruited from a statewide paediatric hospice who self-identified as a ‘primary caregiver’ for one or more children and/or adolescents (<=18 years) with a life-limiting condition.
Four key themes represented the prevalent experiences of parents: (1) trapped inside the house, (2) the protector, (3) living with the shadow and (4) travelling a different pathway. They describe parents’ physical and social isolation, exclusion from the workforce, pervasive grief and associated impacts to their health and well-being. Limited professional and diminished social supports resulted in full ownership of care responsibility. Yet, parents embraced their role as ‘protector’, reporting acquired meaning and purpose.
This study builds upon the growing body of evidence available in paediatric palliative care internationally. The key themes highlight the substantial demand for both physical and emotional support beyond what is currently offered and call for the implementation of carefully planned support services and other societal initiatives which seek to alleviate the broad health impacts to caregivers.
The number of HIV-infected patients who require palliative or end-of-life care is increasing, and the status of end-of-life care for HIV patients with malignancies is unclear.
This study aimed to evaluate the end-of-life care provided to HIV patients with malignancies in Japan.
National cross-sectional questionnaire-based survey.
Questionnaires were delivered to the medical staff of 378 regional core hospitals/core hospitals for AIDS and 285 palliative care units in Japan. Data were collected between August and October 2013.
Overall, 226 regional core hospitals/core hospitals for AIDS (59.8%) responded. A total of 55 institutions (24.3%) provided end-of-life care to HIV patients with malignancies. Regarding the place of death of the patients, 69.1% died at the institution whereas 18.2% were transferred to palliative care units. The requests of 16 (29.1%) institutions to transfer patients to palliative care units were rejected. Of the 378 palliative care units, 179 (62.8%) responded. While 13 palliative care units (4.6%) provided care to hospitalized HIV patients with malignancies, 20 (11.2%) refused to accept these patients for treatment because of a lack of experience in treating these patients and a lack of knowledge regarding HIV infection.
Our findings suggest that in Japan, HIV patients with malignancies have difficulties obtaining hospitalization at a palliative care unit, which is likely due to a lack of experience among the professionals in treating such patients as well as a lack of knowledge about HIV.
In Canada and other developed countries, the majority of neonatal deaths occur in tertiary neonatal intensive care units. Most deaths occur following the withdrawal of life-sustaining treatments.
To explore neonatal death events and end-of-life care practices in two tertiary neonatal intensive care settings.
A structured, retrospective, cohort study.
All infants who died under tertiary neonatal intensive care from January 2009 to December 2013 in a regional Canadian neonatal program. Deaths occurring outside the neonatal intensive care unit in delivery rooms, hospital wards, or family homes were not included. Overall, 227 infant deaths were identified.
The most common reasons for admission included prematurity (53.7%), prematurity with congenital anomaly/syndrome (20.3%), term congenital anomaly (11.5%), and hypoxic ischemic encephalopathy (12.3%). The median age at death was 7 days. Death tended to follow a decision to withdraw life-sustaining treatment with anticipated poor developmental outcome or perceived quality of life, or in the context of a moribund dying infant. Time to death after withdrawal of life-sustaining treatment was uncommonly a protracted event but did vary widely. Most dying infants were held by family members in the neonatal intensive care unit or in a parent room off cardiorespiratory monitors. Analgesic and sedative medications were variably given and not associated with a hastening of death.
Variability exists in end-of-life care practices such as provision of analgesic and sedative medications. Other practices such as discontinuation of cardiorespiratory monitors and use of parent rooms are more uniform. More research is needed to understand variation in neonatal end-of-life care.
The number of elderly patients admitted to the intensive care unit is constantly growing. However, a decision regarding intensive care in these populations remains a challenge.
To identify factors that influences the decision of elderly patients and their families about whether to initiate intensive care in case of an acute event.
Medical records of patients (>80 years), who were admitted to general wards and referred for intensive care, were retrospectively reviewed. Patients who received intensive care were compared with those not agreeing to the initiation of intensive care.
Among the 125 patients, 45 agreed to receiving intensive care. Baseline characteristics at the time of intensive care unit referral were similar between the intensive care and non-intensive care groups. Only one patient had advance directives before the intensive care unit referral. Lower economic status (odds ratio = 0.27, 95% confidence interval = 0.08–0.94) and cognitive impairment (odds ratio = 0.20, 95% confidence interval = 0.07–0.56) were found associated with a lower likelihood of agreeing to intensive care, while a large number of participants involved in the decision-making process were associated with a higher likelihood of intensive care unit use (odds ratio = 1.82, 95% confidence interval = 1.08–3.09). Mean duration of hospital stay was longer for the intensive care group as compared with the non-intensive care group (28.8 days and 19.8 days, respectively, p = 0.03). However, there was no significant difference in the survival rate.
The initiation of intensive care in elderly patients was influenced not only by medical conditions but also by the patient’s economic status and the number of family members involved in the decision-making process.
Advance care planning initiatives are being implemented across healthcare systems around the world, but how best to evaluate their implementation is unknown.
To identify gaps and/or redundancies in current evaluative strategies to help healthcare systems develop future evaluative frameworks for ACP.
Systematic review.
Peer-reviewed and gray literature searches were conducted till February 2015 to answer: "What methods have healthcare systems used to evaluate implementation of advance care planning initiatives?" A PICOS framework was developed to identify articles describing the implementation and evaluation of a health system–level advance care planning initiative. Outcome measures were mapped onto a conceptual quality indicator framework based on the Institute of Medicine and Donabedian models of healthcare quality.
A total of 46 studies met inclusion criteria for analysis. Most articles reported on single parts of a healthcare system (e.g. continuing care). The most common outcome measures pertained to document completion, followed by healthcare resource use. Patient-, family-, or healthcare provider-reported outcomes were less commonly measured. Concordance measures (e.g. dying in place of choice) were reported by only 26% of studies. The conceptual quality indicator framework identified gaps and redundancies in measurement and is presented as a potential foundation from which to develop a comprehensive advance care planning evaluation framework.
Document completion is frequently used to evaluate advance care planning program implementation; capturing the quality of care appears to be more difficult. This systematic review provides health system administrators with a comprehensive summary of measures used to evaluate advance care planning and may identify gaps in evaluation within their local context.
Surveys suggest most people would prefer to die in their own home.
To examine predictors of place of death over an 11-year period between 2000 and 2010 in Dumfries and Galloway, south west Scotland.
Retrospective cohort study.
19,697 Dumfries and Galloway residents who died in the region or elsewhere in Scotland. We explored the relation between age, gender, cause of death (cancer, respiratory, ischaemic heart disease, stroke and dementia) and place of death (acute hospital, cottage hospital, residential care and home) using regression models to show differences and trends. The main acute hospital in the region had a specialist palliative care unit.
Fewer people died in their own homes (23.2% vs 29.6%) in 2010 than in 2000. Between 2007 and 2010, men were more likely to die at home than women (p < 0.001), while both sexes were less likely to die at home as they became older (p < 0.001) and in successive calendar years (p < 0.003). Older people with dementia as the cause of death were particularly unlikely to die in an acute hospital and very likely to die in a residential home (p < 0.001). Between 2007 and 2010, an increasing proportion of acute hospital deaths occurred in the specialist palliative care unit (6% vs 11% of all deaths in the study).
The proportion of people dying at home fell during our survey. Place of death was strongly associated with age, calendar year and cause of death. A mismatch remains between stated preference for place of death and where death occurs.
Terminally ill patients at the end-of-life do transit between care settings due to their complex care needs. Problems of care fragmentation could result in poor quality of care.
We aimed to evaluate the impact of an integrated hospice home care programme on acute care service usage and on the share of home deaths.
The retrospective study cohort comprised patients who were diagnosed with cancer, had an expected prognosis of 1 year or less, and were referred to a home hospice. The intervention group comprised deceased patients enrolled in the integrated hospice home care programme between September 2012 and June 2014. The historical comparison group comprised deceased patients who were referred to other home hospices between January 2007 and January 2011.
There were 321 cases and 593 comparator subjects. Relative to the comparator group, the share of hospital deaths was significantly lower for programme participants (12.1% versus 42.7%). After adjusting for differences at baseline, the intervention group had statistically significantly lower emergency department visits at 30 days (incidence rate ratio: 0.38; 95% confidence interval: 0.31–0.47), 60 days (incidence rate ratio: 0.61; 95% confidence interval: 0.54–0.69) and 90 days (incidence rate ratio: 0.69; 95% confidence interval: 0.62–0.77) prior to death. Similar results held for the number of hospitalisations at 30 days (incidence rate ratio: 0.48; 95% confidence interval: 0.40–0.58), 60 days (incidence rate ratio: 0.71; 95% confidence interval: 0.62–0.82) and 90 days (incidence rate ratio: 0.77; 95% confidence interval: 0.68–0.88) prior to death.
Our results demonstrated that by integrating services between acute care and home hospice care, a reduction in acute care service usage could occur.
Death anxiety is important but understudied in palliative care. New self-report measurements have been developed, but their interpretation and clinical utility may not be evident.
To inform our understanding of death anxiety in patients with advanced cancer by exploring the relationship between this self-reported symptom and its clinical presentation.
Participants were part of a psychotherapy trial in advanced cancer. First therapy session transcripts were analyzed using interpretive description in patients reporting low, moderate, and high death anxiety on the Death and Dying Distress Scale (DADDS).
A total of 16 participants (10 women and 6 men) with advanced or metastatic cancer were sampled from the Princess Margaret Cancer Centre, Toronto, Canada. Six participants reported low death anxiety scores (Death and Dying Distress Scale: 0–19), five moderate (Death and Dying Distress Scale: 20–50), and five high (Death and Dying Distress Scale: 51–75).
The low death anxiety group exhibited psychological readiness for death, or contrastingly, non-reflectiveness about death. The moderate group recognized the imminence of mortality, which impacted treatment decisions and future plans. Prior experience with death was discussed as raising the salience of mortality. The high group felt dominated by powerful emotions and could not make sense of their situation. Their distress was exacerbated by substantial relational concerns.
Self-reported death anxiety is affected by the awareness and ability to reflect on mortality. Death and Dying Distress Scale scores may facilitate exploration of this symptom as part of a clinical assessment and may serve to guide treatment approaches. Greater attention to death anxiety is consistent with and recommended by contemporary approaches to palliative care.
Spiritual distress is a factor associated with poor outcomes at the end of life. Timely interventions, assessing and meeting spiritual distress, among patients are contained within nationally agreed guidance. Community clergy are well placed to work alongside healthcare professionals and chaplains to meet spiritual needs.
Qualitative interviews among Christian clergy in two South East London boroughs and a self-completed Death Anxiety Questionnaire.
Fourteen clergy were interviewed from six Christian denominations. Participants described their experiences of ordination training and how helpful this had been for their work among Christian communities. Respondents were invited to discuss their knowledge of and involvement with palliative care services. Each interviewee also accounted for their understanding of pastoral care and spiritual care and considered whether any differences existed between these terms and, if so, what they were. Overall, clergy lacked any detailed formal training and had little experience of working with or relating to palliative care providers. Recommendations are made to improve educational opportunities and working relationships.
Creating opportunities for clergy and palliative care staff to meet and undertake shared training will enhance the quality and level of care for people dying at home who wish to receive spiritual support. Enabling clergy to develop links with local palliative care centres will enhance confidence for both clergy and staff.
Despite advances in treatment of pain in advanced cancer, it remains a major source of suffering with adverse effects on patients’ life quality. There is increasing understanding of its multi-dimensional nature and the variable responsiveness of medication to complex pain. Less clear is how patients and their caregivers respond to and manage pain complexity.
To explore patients’ and carers’ experiences of advanced cancer pain and the processes that they engage in to manage pain.
Qualitative study employing face-to-face interviews at two time points and audio diaries. Data were analysed using grounded theory strategies.
Purposive sample of 21 advanced cancer patients and 16 carers from oncology outpatients in a tertiary cancer centre and a hospice.
Three distinct patterns of pain were discerned in patients’ accounts, distinguishable in terms of complexity, severity, transiency and degree of perceived control over pain. Pain was dynamic reflecting changes in the disease process, access to and effectiveness of pain relief. For patients and carers, neither pain relief nor expertise in pain management is secured once and for all. The main drivers of help-seeking and action by patients to manage pain were the sensory experiences of pain and meaning attached to it, not beliefs about analgesia.
The complex and dynamic nature of pain and how it was understood shaped help-seeking and pain management. Variable effectiveness of pain relief for different pain types were challenging for patients and professionals in achieving relief.
Decisions about medical indication are a relevant problem in pediatrics. Difficulties arise from the high prognostic uncertainty, the decisional incapacity of many children, the importance of the family, and conflicts with parents. The objectivity of judgments about medical indication has been questioned. Yet, little is known about the factors pediatricians actually include in their decisions.
Our aims were to investigate which factors pediatricians apply in deciding about medical indication, and how they manage conflicts with parents.
We performed a qualitative focus group study with experienced pediatricians. The transcripts were subjected to qualitative content analysis.
We conducted three focus groups with pediatricians from different specialties caring for severely ill children/adolescents. They discussed life-sustaining treatment in two case scenarios that varied according to diagnosis, age, and gender.
The decisions about medical indication were based on considerations relating to the individual patient, to the family, and to other patients. Individual patient factors included clinical aspects and benefit–burden considerations. Physicians’ individual views and feelings influenced their decision-making. Different factors were applied or weighed differently in the two cases. In case of conflict with parents, physicians preferred solutions aimed at establishing consensus.
The pediatricians defined medical indication on a case-by-case basis and were influenced by emotional reasoning. In contrast to prevailing ethico-legal principles, they included the interests of other persons in their decisions. Decision-making strategies should incorporate explicit discussions of social aspects and physicians’ feelings to improve the transparency of the decision-making process and reduce bias.
Effective undergraduate education is required to enable newly qualified doctors to safely care for patients with palliative care and end-of-life needs. The status of palliative care teaching for UK medical students is unknown.
To investigate palliative care training at UK medical schools and compare with data collected in 2000.
An anonymised, web-based multifactorial questionnaire.
Results were obtained from palliative care course organisers at all 30 medical schools in 2013 and compared with 23 medical schools (24 programmes) in 2000.
All continue to deliver mandatory teaching on ‘last days of life, death and bereavement’. Time devoted to palliative care teaching time varied (2000: 6–100 h, mean 20 h; 2013: 7–98 h, mean 36 h, median 25 h). Current palliative care teaching is more integrated. There was little change in core topics and teaching methods. New features include ‘involvement in clinical areas’, participation of patient and carers and attendance at multidisciplinary team meetings. Hospice visits are offered (22/24 (92%) vs 27/30 (90%)) although they do not always involve patient contact. There has been an increase in students’ assessments (2000: 6/24, 25% vs 2013: 25/30, 83%) using a mixture of formative and summative methods. Some course organisers lack an overview of what is delivered locally.
Undergraduate palliative care training continues to evolve with greater integration, increased teaching, new delivery methods and wider assessment. There is a trend towards increased patient contact and clinical involvement. A minority of medical schools offer limited teaching and patient contact which could impact on the delivery of safe palliative care by newly qualified doctors.
The need for palliative care is growing internationally with an increasing prevalence of non-malignant diseases. The integrated care pathway was implemented in primary care by multidisciplinary teams from 2009 in a locality in the North East of England. Fourteen general practitioner practices provided data for the study.
To find whether, how, and under what circumstances palliative care registrations are made for patients with non-malignant diseases in primary care.
General practitioner practice data were analysed statistically and qualitative data were collected from health care professionals and members of relevant organisations.
A mixed-effects logistic model indicated a significant difference beyond the 0.1% level (p < 0.001) in registrations between the malignant and non-malignant groups in 2011, with an odds ratio of 0.09 (=exp(–2.4266)), indicating that patients in the non-malignant group are around 11 times (1/0.09) less likely to be registered than patients in the malignant group. However, patients with non-malignant diseases were significantly more likely to be registered in 2012 than in 2011 with an odds ratio of 1.46, significant beyond the 1% level. Qualitative analyses indicate that health care professionals find registering patients with non-malignant diseases stressful, yet feel that their confidence in treating this population is increasing.
The integrated care pathway began to enable the reduction in inequalities in care by identifying, registering and managing an increasing number of palliative patients with non-malignant diseases. Consensual and inclusive definitions of palliative care were developed in order to legitimise the registration of such patients.
The ICECAP-Supportive Care Measure is a self-complete questionnaire developed to aid economic evaluation of supportive care interventions.
To determine the feasibility of completing ICECAP–Supportive Care Measure alongside EQ-5D-5L and ICECAP-A (generic measures used in economic evaluation) among patients receiving hospice care, close persons and healthcare professionals.
Participants were asked to ‘think aloud’ while completing ICECAP-Supportive Care Measure and two other generic measures used in economic evaluation, EQ-5D-5L and ICECAP-A, and then participate in a semi-structured interview. From verbatim transcripts, five raters identified the frequency of errors in comprehension, retrieval, judgement and response. Qualitative data were analysed using constant comparison.
Eligible patients were identified from one UK hospice by a research nurse. Close persons and healthcare professionals were identified by the patient. In all, 72 semi-structured interviews were conducted with patients (n = 33), close persons (n = 22) and healthcare professionals (n = 17).
Patients and close persons reported that the ICECAP-Supportive Care Measure was most appropriate for measuring their quality of life. It appeared more meaningful, easier to complete and had fewest errors (3.9% among patients, 4.5% among close persons) compared to EQ-5D-5L (9.7% among patients, 5.5% among close persons). Healthcare professionals acknowledged the value of the ICECAP-Supportive Care Measure but had fewer errors in completing the EQ-5D-5L (3.5% versus 6.7%). They found it easier to complete because it focuses on observable health states.
The ICECAP-Supportive Care Measure is feasible to use and perceived as appropriate for evaluating palliative care interventions. Healthcare professionals with limited knowledge of the patient who act as proxy completers may find the measure difficult to complete.
Palliative care is rooted in the care for incurably ill cancer patients. Yet today there is a recognised need for palliative care for patients with non-cancer conditions. However, the often unpredictable illness trajectories and the difficulty in predicting the imminence of death in people with non-cancer conditions may hamper the provision of high-quality palliative care.
To compare the quality of palliative care provided to patients with cancer, patients with organ failure and frail patients and their relatives.
An existing dataset was analysed, consisting of data collected through the Consumer Quality Index Palliative Care questionnaire for bereaved relatives.
Data were analysed of 456 relatives of deceased patients with cancer, patients with organ failure and frail patients from various care settings in the Netherlands.
Relatives (e.g. partners or children) of deceased patients with organ failure (n = 61) were more likely to have negative experiences regarding the expertise of healthcare professionals compared with relatives of patients with cancer (n = 215). Relatives of frail patients (n = 180) gave a relatively low rating of the general quality of the care in the last week of the patient’s life, both as regards the care provided to patients (p = 0.015) and as regards the support to relatives (p = 0.009).
Compared with the bereaved relatives of patients with cancer, bereaved relatives of patients with organ failure or frailty were more likely to negatively assess the palliative care provided to both the patient and themselves. Improving professionals’ expertise in palliative care for people with non-cancer conditions is recommended.
Patients with end-stage renal disease report infrequent end-of-life discussions, and nephrology trainees report feeling unprepared for end-of-life decision making, but the views of dialysis medical directors have not been studied.
Our objective is to understand dialysis medical directors’ views and practice patterns on end-of-life decision making for patients with ESRD.
We administered questionnaires to dialysis medical directors during medical director meetings of three different dialysis organizations in 2013. Survey questions corresponded to recommendations from the Renal Physicians Association clinical practice guidelines on initiation and withdrawal of dialysis.
There were 121 medical director respondents from 28 states.
The majority of respondents felt "very prepared" (66%) or "somewhat prepared" (29%) to participate in end-of-life decisions and most (80%) endorsed a model of shared decision making. If asked to do so, 70% of the respondents provided prognostic information "often" or "nearly always." For patients with a poor prognosis, 36% of respondents would offer a time-limited trial of dialysis "often" or "nearly always", while 56% of respondents would suggest withdrawal from dialysis "often" or "nearly always" for those with a poor prognosis currently receiving dialysis therapy. Patient resistance and fear of taking away hope were the most commonly cited barriers to end-of-life discussions.
Views and reported practice patterns of medical directors are consistent with clinical practice guidelines for end-of-life decision making for patients with end-stage renal disease but inconsistent with patient perceptions.
As societies age and governments attempt to manage within constrained health budgets by moving care into community settings, women will be called upon to provide more palliative care in old age. However, little is known about gendered disparities for caregivers of people over the age of 65 years.
To identify and synthesise the empirical literature between 1994 and 2014 that focusses on gender and family caregiving for people over the age of 65 years with a life-limiting illness.
Systematic review of qualitative and quantitative studies conducted in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. Supplemental review using a novel feminist quality appraisal framework.
Search of MEDLINE, CINAHL, PsycINFO, Sociological Abstracts and Gender Studies to find empirical studies on gender and family caregiving at end-of-life in the context of old age.
Of 19 studies identified, 9 presented thorough gender analyses. Gender themes included why people care, how they care, and the consequences of providing care. Women caregivers experienced a greater degree of mental and physical strain than their male counterparts. This was linked to societal expectation that women should provide a greater degree of care at the end-of-life for family members.
Palliative family caregiving for older adults is gendered. Gender affects why people care and the consequences of providing care. Palliative care literature needs to incorporate a greater gender focus for future research and policy makers need to be aware of the gendered ramifications of providing more palliative care in the community.
Cancer patients’ preferences regarding disclosure of prognosis and end-of-life care remain under-reported from low- and middle-income countries where cancer poses an increasing demand on scarce healthcare resources. A better knowledge of these preferences can help in achievement of shared treatment goals.
To survey preferences of adult cancer patients regarding disclosure of prognosis and end-of-life care
A multidimensional questionnaire was developed to survey consecutively sampled patients. A fifth of the participants completed a repeat survey 3 months later.
Adult patients at a specialist cancer center in Pakistan.
In total, 520 patients were surveyed initially (participation rate 98.6%) and 100 completed the repeat survey. Three in five respondents wanted a healthcare provider to give them detailed information about their prognosis and life expectancy. Those who wanted information withheld were significantly more likely to be female, to have a lower socioeconomic status, or to have lung cancer. Only two in five patients agreed that they wanted to die at home and more than 90% wanted all possible care till end-of-life. Yet, a little over half also agreed that they did not wish to be placed on a ventilator. In rank ordering preferences about end-of-life, respondents ranked "religious wellbeing" as the highest and "avoiding inappropriate prolongation of dying" as the lowest of six options.
A majority of adult cancer patients surveyed in this study wanted a truthful disclosure about their disease prognosis and expressed a preference for hospital-based care at end-of-life. Healthcare providers should find ways to tailor prognostic information to patients’ expressed information needs.
Hospitalizations of nursing home residents with dementia may not be uncommon. However, evidence from epidemiological studies outside the United States and knowledge about the circumstances of hospitalizations are lacking.
To examine the proportion of nursing home residents with dementia hospitalized in the last month of life and factors associated with hospitalization.
The design is stratified cluster sampling survey. Nurses retrospectively registered demographic and dementia-related information about deceased residents with dementia. This included information about hospitalizations, persons involved in hospitalization decisions and type and content of information transferred when hospitalized.
Nursing home residents dying with dementia in Belgium (Flanders) in 2010.
In the final month of life, 19.5% of nursing home residents dying with dementia (N = 198) were hospitalized, including 4.6% admitted to an intensive care unit. For 12.2% of residents dying with dementia, a do-not-hospitalize advance directive was present, for 57.0%, a do-not-hospitalize general physician–order. Residents without a do-not-hospitalize general physician–order were more likely of being hospitalized (adjusted odds ratio: 3.4; 95% confidence interval: 1.3–8.7). None of the hospitalizations occurred at the request of the resident; 37% were at the request of relatives; curative or life-prolonging treatments were the most frequent reasons given. Information about the resident’s nursing care or medical treatment was transferred in almost all hospitalizations, information about wishes and preferences for future care in 19%.
Hospitalization in Belgian nursing home residents with dementia in the last month of life was common. Documentation of do-not-hospitalize physician-orders in the resident’s medical files may prevent hospitalizations.
There has been an increase in observational studies using health administrative data to examine the nature, quality, and costs of care at life’s end, particularly in cancer care.
To synthesize retrospective observational studies on resource utilization and/or costs at the end of life in cancer patients. We also examine the methods and outcomes of studies assessing the quality of end-of-life care.
A systematic review according to PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) and AMSTAR (A Measurement Tool to Assess Systematic Reviews) methodology.
We searched MEDLINE, Embase, CINAHL, and York Centre for Research and Dissemination (1990–2011). Independent reviewers screened abstracts of 14,424 articles, and 835 full-text manuscripts were further reviewed. Inclusion criteria were English-language; at least one resource utilization or cost outcome in adult cancer decedents with solid tumors; outcomes derived from health administrative data; and an exclusive end-of-life focus.
We reviewed 78 studies examining end-of-life care in over 3.7 million cancer decedents; 33 were published since 2008. We observed exponential increases in service use and costs as death approached; hospital services being the main cost driver. Palliative services were relatively underutilized and associated with lower expenditures than hospital-based care. The 15 studies using quality indicators demonstrated that up to 38% of patients receive chemotherapy or life-sustaining treatments in the last month of life and up to 66% do not receive hospice/palliative services.
Observational studies using health administrative data have the potential to drive evidence-based palliative care practice and policy. Further development of quality care markers will enhance benchmarking activities across health care jurisdictions, providers, and patient populations.
Screening to identify hospital inpatients with a short life expectancy may be a way to improve care towards the end of life. The Gold Standards Framework Prognostic Indicator Guidance is a screening tool that has recently been advocated for use in the hospital setting.
To assess the clinical utility of the Gold Standards Framework Prognostic Indicator Guidance as a screening tool in an acute hospital setting.
Mortality at 6 and 12 months and sensitivity, specificity and predictive value of the Gold Standards Framework Prognostic Indicator Guidance at 1 year.
Prospective cross-sectional study of 501 adult inpatients in a tertiary New Zealand teaching hospital screened utilising the Gold Standards Framework Prognostic Indicator Guidance.
A total of 99 patients were identified as meeting at least one of the Gold Standards Framework Prognostic Indicator Guidance triggers. In this group, 6-month mortality was 56.6% and 12-month mortality was 67.7% compared with 5.2% and 10%, respectively, for those not identified as meeting the criteria. The sensitivity and specificity of the Gold Standards Framework Prognostic Indicator Guidance at 1 year were 62.6% and 91.9%, respectively, with a positive predictive value of 67.7% and a negative predictive value of 90.0%.
The sensitivity, specificity and predictive values of the Gold Standards Framework Prognostic Indicator Guidance in this study are comparable to, or better than, results of studies identifying patients with a limited life expectancy in particular disease states (e.g. heart failure and renal failure). Screening utilising the Gold Standards Framework Prognostic Indicator Guidance in the acute setting could be the first step towards implementing a more systematic way of addressing patient need – both current unrecognised and future anticipated – thereby improving outcomes for this population.
Managing medications is a complex responsibility of family caregivers caring for end-of-life patients. This study characterizes caregivers with and without formal/informal support managing medications for patients who receive end-of-life care at home.
To explore factors related to caregivers’ support with managing medications for end-of-life home hospice patients.
A convenience-sampled, cross-sectional telephone survey.
Computer-assisted telephone interviews were administered to 120 caregivers managing medications, who were referred by five Chicago-based home hospice services. We measured caregivers’ additional formal (paid) and informal (unpaid) support with managing medications, and caregiver/patient socio-demographic, relational, and health characteristics.
While 47 (39%) had no additional support with managing medications, 27 (22.5%) had formal support, 37 (31%) informal, and 9 (7.5%) both. Seven caregivers (19%) with formal and 13 (31%) with informal support reported disagreements concerning treatment plans. Caregivers lacking formal support tended to be racial/ethnic minorities, live with the patient in their home, or report greater emotional burden. Caregivers with formal support tended to report higher education/income, lower mutuality, or care for a patient with over 6 months’ hospice enrollment. Caregivers lacking informal support tended to be spousal caregivers, live with the patient, or have experience caring for another dying person.
Our study suggests that high proportions of caregivers may not have support managing medications for patients receiving hospice care at home. More research should examine whether the observed variations in obtaining support indicate disparities or unmet needs among caregivers. Disagreement about treatment with formal/informal support also warrants further investigation.
To provide effective palliative care in different settings, it is important to understand and identify the sources of dignity-related distress experienced by people nearing the end of life.
To describe and compare the sources of dignity-related distress reported by cancer patients and care home residents.
Secondary analysis of merged data. Participants completed the Patient Dignity Inventory (assessing 25 sources of dignity-related distress) and measures of quality of life and depression.
A total of 45 adult patients with advanced cancer referred to hospital-based palliative care teams in London, United Kingdom, and 60 residents living in one of 15 care homes in London.
Care home residents were older and had poorer functioning. Both groups reported a wide range of dignity-related problems. Although the number or problems reported on the Patient Dignity Inventory was similar for the two groups (mean (standard deviation): 5.9 (5.5) for cancer patients and 4.1 (4.3) for care home residents, p = 0.07), there was a tendency for more cancer patients to report some existential problems. Experiencing physically distressing symptoms and functional limitations were prevalent problems for both groups. Patient Dignity Inventory problems were associated with poorer performance status and functioning for residents, with age and cognitive impairment for cancer patients and with poorer quality of life and depression for both groups.
Although characteristics of the samples differed, similarities in the dignity-related problems reported by cancer patients and care home residents support research suggesting a common pathway towards death for malignant and non-malignant disease. A wider understanding of the sources of dignity-related distress would help clinicians provide more effective end-of-life care.
There is a paucity of data evaluating utilization of palliative care in trauma intensive care units.
We sought to determine current indications and determinants of palliative care consultation in the trauma intensive care units.
Using a cross-sectional assessment, we surveyed trauma surgeons to understand indications, benefits, and barriers trauma surgeons perceive when consulting palliative care.
A total of 1232 surveys were emailed to all members of the Eastern Association for the Surgery of Trauma.
A total of 362 providers responded (29% response rate). Majority of respondents were male (n = 287, 80.2%) and practiced in Level 1 (n = 278, 77.7%) trauma centers. Most common indicators for referral to palliative care were expected survival 1 week to 1 month, multisystem organ dysfunction >3 weeks, minimal neurologic responsiveness >1 week, and referral to hospice. In post hoc analysis, there was a significant difference in frequency of utilization of palliative care when respondents had access to board-certified palliative care physicians (2 = 56.4, p < 0.001). Although half of the respondents (n = 199, 55.6%) reported palliative care consults beneficial all or most of the time, nearly still half (n = 174, 48.6%) felt palliative care was underutilized. Most frequent barriers to consultation included resistance from families (n = 144, 40.2%), concerns that physicians were "giving up" (n = 109, 30.4%), and miscommunication of prognosis (n = 98, 27.4%) or diagnosis (n = 58, 16.2%) by the palliative care physician.
Although a plurality of trauma surgeons reported palliative care beneficial, those surveyed indicate that palliative care is underutilized. Barriers identified provide important opportunities to further appropriate utilization of palliative care services.
The quality of palliative care is the foremost preoccupation of clinicians, decision-makers, and managers as well as patients and families. Major input from healthcare professionals is required to develop indicators for the quality of palliative care, but the involvement of patients and families is also recognized as essential, even though this is rarely achieved in practice.
The objectives of this study were to identify (1) convergences and divergences in the points of view of different stakeholders (patients, families, healthcare professionals) relative to key elements of the quality of palliative care and (2) avenues for refining existing indicators of quality of palliative care.
Cross-sectional qualitative study.
There were six settings: two hospital-based palliative care units, one hospice, and three other medical units where a mobile palliative care team intervene. Semi-structured interviews were conducted among 61 patients, families, healthcare professionals, and managers.
Four major dimensions of quality of care are deemed critical by patients, their families, and professionals: comprehensive support for the patients themselves, clinical management, involvement of families, and care for the imminently dying person and death. Differences exist between various stakeholders regarding perceptions of some dimensions of quality of care. Avenues for improving current quality of care indicators are identified.
Our study results can be used to refine or develop quality indicators that truly mirror the points of view of patients and their families and of healthcare professionals.
Primary care has the potential to play significant roles in providing effective palliative care for non-cancer patients.
To identify, critically appraise and synthesise the existing evidence on views on the provision of palliative care for non-cancer patients by primary care providers and reveal any gaps in the evidence.
Standard systematic review and narrative synthesis.
MEDLINE, Embase, CINAHL, PsycINFO, Applied Social Science Abstract and the Cochrane library were searched in 2012. Reference searching, hand searching, expert consultations and grey literature searches complemented these. Papers with the views of patients/carers or professionals on primary palliative care provision to non-cancer patients in the community were included. The amended Hawker’s criteria were used for quality assessment of included studies.
A total of 30 studies were included and represent the views of 719 patients, 605 carers and over 400 professionals. In all, 27 studies are from the United Kingdom. Patients and carers expect primary care physicians to provide compassionate care, have appropriate knowledge and play central roles in providing care. The roles of professionals are unclear to patients, carers and professionals themselves. Uncertainty of illness trajectory and lack of collaboration between health-care professionals were identified as barriers to effective care.
Effective interprofessional work to deal with uncertainty and maintain coordinated care is needed for better palliative care provision to non-cancer patients in the community. Research into and development of a best model for effective interdisciplinary work are needed.
Advance Care Planning is an iterative process of discussion, decision-making and documentation about end-of-life care. Advance Care Planning is highly relevant in palliative care due to intersecting clinical needs. To enhance the implementation of Advance Care Planning, the contextual factors influencing its uptake need to be better understood.
To identify the contextual factors influencing the uptake of Advance Care Planning in palliative care as published between January 2008 and December 2012.
Databases were systematically searched for studies about Advance Care Planning in palliative care published between January 2008 and December 2012. This yielded 27 eligible studies, which were appraised using National Institute of Health and Care Excellence Quality Appraisal Checklists. Iterative thematic synthesis was used to group results.
Factors associated with greater uptake included older age, a college degree, a diagnosis of cancer, greater functional impairment, being white, greater understanding of poor prognosis and receiving or working in specialist palliative care. Barriers included having non-malignant diagnoses, having dependent children, being African American, and uncertainty about Advance Care Planning and its legal status. Individuals’ previous illness experiences, preferences and attitudes also influenced their participation.
Factors influencing the uptake of Advance Care Planning in palliative care are complex and multifaceted reflecting the diverse and often competing needs of patients, health professionals, legislature and health systems. Large population-based studies of palliative care patients are required to develop the sound theoretical and empirical foundation needed to improve uptake of Advance Care Planning in this setting.
Most patients dying at home do not have a Do Not Attempt Cardiopulmonary Resuscitation decision and may have inappropriate attempts at resuscitation made when they die.
To investigate how general practitioners think and feel about making and communicating Do Not Attempt Cardiopulmonary Resuscitation decisions for patients dying in the community.
Qualitative study using semi-structured interviews with general practitioners. The interviews were recorded and analysed using interpretative phenomenological analysis.
Purposive sampling was used to recruit 10 general practitioners from urban and rural practices in Southern England and of various ages and experience. Interviews were carried out either in their home or in their practice.
General practitioners often wait until the patient has clearly deteriorated to communicate and document the Do Not Attempt Cardiopulmonary Resuscitation decision. They consider the chance of success of a resuscitation attempt, quality of life, dignity and the patient’s and family’s wishes. General practitioners feel they should discuss the decision with the patient but have anxieties about this. They vary widely in how much they guide patients and families in decision-making. Timing and the avoidance of conflict are important. Teamwork provides support in decision-making.
Resuscitation decisions are important in facilitating a peaceful death, but can be difficult for general practitioners to discuss. General practitioners might benefit from clearer guidance on when an attempt at resuscitation is unlikely to be successful, especially in non-malignant disease. Team discussions including Gold Standards Framework meetings can give confidence and support in making difficult end-of-life decisions.
Previous studies on hospice/palliative care indicated that patients’ socio-demographic factors, disease status, and availability of health-care resources were associated with hospice/palliative care utilization. However, the impact of family caregivers on hospice/palliative care utilization has not been thoroughly investigated.
To evaluate the association between attitudes toward hospice/palliative care of both patients with terminal cancer (defined as progressive, advanced cancer in which the patient will die within months) and their family caregivers and utilization of inpatient hospice/palliative care facilities.
A prospective observational cohort study was performed in 12 hospitals in South Korea. Attitude toward hospice/palliative care was assessed immediately after terminal cancer diagnosis. After the patient’s death, caregivers were interviewed whether they utilized hospice/palliative care facilities.
A total of 359 patient–caregiver dyads completed baseline questionnaires. After the patients’ death, 257 caregivers were interviewed.
At the baseline questionnaire, 137/359 (38.2%) patients and 185/359 (51.5%) of caregivers preferred hospice/palliative care. Preference for hospice/palliative care was associated with awareness of terminal status among both patients (adjusted odds ratio: 1.87, 95% confidence interval: 1.16–3.03) and caregivers (adjusted odds ratio: 2.14, 95% confidence interval: 1.20–3.81). Religion, metastasis, and poor performance status were also independently associated with patient preference for hospice/palliative care. At the post-bereavement interview, 104/257 (40.5%) caregivers responded that they utilized hospice/palliative care facilities. Caregiver’s preferences for hospice/palliative care were significantly associated with actual utilization (adjusted odds ratio: 2.67, 95% confidence interval: 1.53–4.67). No patient-related factors were associated with hospice/palliative care utilization.
Promoting awareness of prognosis and to improve communication between doctors and families is important for facilitating the use of hospice/palliative care.
Many patients are hospitalized in the last months of life. Little is known about the avoidability of these hospitalizations.
To explore whether and how hospitalizations could have been avoided in the last 3 months of life and barriers to avoid this, according to general practitioners in the Netherlands.
Sequential mixed-method design, starting with a cross-sectional nationwide questionnaire study among general practitioners, followed by in-depth interviews.
General practitioners were asked about their most recent patient who died non-suddenly and who was hospitalized in the last 3 months of life. Additionally, 18 of these general practitioners were interviewed in depth about the situation surrounding hospitalization.
According to 24% of 319 general practitioners, the last hospitalization in the final 3 months of their patient’s life could have been avoided. Of all avoidable hospitalizations, 46% could have been avoided by proactive communication with the patient, 36% by more communication between professionals around hospitalization, 28% by additional care and treatment at home, and 10% by patient and family support. In the in-depth interviews, general practitioners confirmed the aforementioned strategies, but also mentioned various barriers in daily practice, such as the timing of proactive communication with the patient, incompleteness of information transfer in acute situations, and the lack of awareness among patients and family that death was near.
A proactive approach could avoid some of the hospitalizations at the end of life, in the opinion of general practitioners. More insight is needed into communication and psychological barriers for timely discussions about end-of-life issues.
Dying with dignity is regarded as a goal of quality end-of-life care. However, the meaning of dying with dignity is ambiguous, and no comprehensive synthesis of the existing literature has been published.
To synthesize the meaning of dying with dignity and to identify common aspects of dignity in end-of-life care.
This is an integrative review article. Methodological strategies specific to the integrative review method proposed by Whittemore and Knafl were followed to conduct data analysis. The matrix method was used to summarize characteristics of included articles.
Five electronic databases were searched in October 2012, with no date restriction: PubMed, CINAHL, PsycINFO, Academic Search Premier, and Social Sciences Abstracts. Theoretical reports, and both qualitative and quantitative empirical reports, focused on dignity in end-of-life care were included.
Themes of dying with dignity are as follows: a human right, autonomy and independence, relieved symptom distress, respect, being human and being self, meaningful relationships, dignified treatment and care, existential satisfaction, privacy, and calm environment. Factors influencing dignity include demographic, illness-related, and treatment-/care-related factors, as well as communication. Models of dignity in end-of-life care and instruments to measure dignity were reported. Interventions to support dignity stressed physical, psychological, and spiritual supports not only to dying patients but also to family members.
This review clarified the meaning of dying with dignity and synthesized common aspects of dignity in end-of-life care. Further research is needed to evaluate the meaning of dying with dignity across cultures and to explore individualized dignity-based care.
Using the ‘surprise’ question ‘Would you be surprised if this patient died in the next year?’ may improve physicians’ prognostic accuracy and identify people appropriate for palliative care.
Determine the prognostic accuracy of general practitioners asking the ‘surprise’ question about their patients with advanced (stage IV) cancer.
Prospective cohort study.
Between December 2011 and February 2012, 42 of 50 randomly selected general practitioners (Bologna area, Italy) prospectively classified 231 patients diagnosed with advanced cancer according to the ‘surprise’ question and supplied the status of each patient 1 year later.
Of the 231 patients, general practitioners responded ‘No’ to the ‘surprise’ question for 126 (54.5%) and ‘Yes’ for 105 (45.5%). After 12 months, 104 (45.0%) patients had died; 87 (83.7%) were in the ‘No’ group. The sensitivity of the ‘surprise’ question was 69.3%; the specificity was 83.6%. Positive predictive value was 83.8%; negative predictive value was 69.0%. The answer to the ‘surprise’ question was significantly correlated with survival at 1 year. Patients in the ‘No’ group had an odds ratio of 11.55 (95% confidence interval: 5.83–23.28) and a hazard ratio of 6.99 (95% confidence interval: 3.75–13.03) of being dead in the next year compared to patients in the ‘Yes’ group (p = 0.000 for both odds ratio and hazard ratio).
When general practitioners used the ‘surprise’ question for their patients with advanced cancer, the accuracy of survival prognosis was very high. This has clinical potential as a method to identify patients who might benefit from palliative care.
Advance care planning is the process of discussing and recording patient preferences concerning goals of care for patients who may lose capacity or communication ability in the future. Advance care planning could potentially improve end-of-life care, but the methods/tools used are varied and of uncertain benefit. Outcome measures used in existing studies are highly variable.
To present an overview of studies on the effects of advance care planning and gain insight in the effectiveness of different types of advance care planning.
Systematic review.
We systematically searched PubMed, EMBASE and PsycINFO databases for experimental and observational studies on the effects of advance care planning published in 2000–2012.
The search yielded 3571 papers, of which 113 were relevant for this review. For each study, the level of evidence was graded. Most studies were observational (95%), originated from the United States (81%) and were performed in hospitals (49%) or nursing homes (32%). Do-not-resuscitate orders (39%) and written advance directives (34%) were most often studied. Advance care planning was often found to decrease life-sustaining treatment, increase use of hospice and palliative care and prevent hospitalisation. Complex advance care planning interventions seem to increase compliance with patients’ end-of-life wishes.
The effects of different types of advance care planning have been studied in various settings and populations using different outcome measures. There is evidence that advance care planning positively impacts the quality of end-of-life care. Complex advance care planning interventions may be more effective in meeting patients’ preferences than written documents alone. More studies are needed with an experimental design, in different settings, including the community.
People with dementia do not always receive good quality end-of-life care, with undertreated pain, aggressive medical interventions and limited access to hospice care being common. Family carers often provide the majority of informal care for people with dementia, therefore may be best placed to comment on quality of care.
We explored what quality end-of-life care for dementia is from the perspective of family carers.
A review of qualitative evidence taking a systematic approach using a narrative synthesis with tabulation, textual description of studies and thematic analysis as tools, following the guidelines from the Economic and Social Research Council.
Keywords and subject headings were searched in MEDLINE, EMBASE, CINAHL, SCIE and PsycINFO for studies from 1990 in April 2012 and updated in May 2013. Reference lists were checked and citation searches undertaken.
Eight studies were included. There was an overarching theme of ‘A family’s belief of death and their choice of treatment’. Three further themes were then identified to explain family carers’ beliefs: the relationship with professionals as a core component of care quality; emotional and commitment pressures of caring and finally, family carers’ ability to think about death and dying.
It is difficult to define what constitutes high-quality end-of-life care for people with dementia from the perspective of family carers. Their views expressed in the literature appear to demonstrate more variation of preference of care and treatment and their uncertainty of this.
End-of-life care is often provided in primary care settings.
To describe and compare general-practitioner end-of-life care for Dutch patients who died from ‘cancer’, ‘organ failure’ and ‘old-age or dementia’.
A cross-sectional, retrospective survey was conducted within a sentinel network of general practitioners. General practitioners recorded the end-of-life care of all patients who died (1 January 2009 to 31 December 2011). Differences in care between patient groups were analysed using multivariate logistic regressions performed with generalised linear mixed models.
Up to 63 general practitioners, covering 0.8% of the population, recorded the care of 1491 patients.
General practitioners personally provided palliative care for 75% of cancer, 38% of organ failure and 64% of old-age/dementia patients (adjusted odds ratio (confidence interval): cancer (reference category); organ failure: 0.28 (0.17, 0.47); old-age/dementia: 0.31 (0.15, 0.63)). In the week before death, 89% of cancer, 77% of organ failure and 86% of old-age/dementia patients received palliative treatments: (adjusted odds ratio (confidence interval): cancer (reference category); old-age/dementia: 0.54 (0.29, 1.00); organ failure: 0.38 (0.16, 0.92)). Options for palliative care were discussed with 81% of cancer, 44% of organ failure and 39% of old-age/dementia patients (adjusted odds ratio (confidence interval): cancer (reference category); old-age/dementia: 0.34 (0.21, 0.57); organ failure: 0.17 (0.08, 0.36)).
The results highlight the need to integrate palliative care with optimal disease management in primary practice and to initiate advance care planning early in the chronic disease trajectory to enable all patients to live as well as possible with progressive illness and die with dignity and comfort.
Despite a majority preferring not to die in hospital and health policies aimed at increasing home death, the proportion of hospital deaths remains high. Gaining insight into professional caregiver perspectives about what justifies them could be helpful in understanding the persistently high rates of such hospital admissions and hospital deaths.
To explore the perspectives of nurses from nursing homes, home care and hospitals, and family physicians concerning hospital admissions at the end of life and the circumstances in which they consider them to be justified.
Focus groups, transcribed verbatim and analysed using a constant comparative approach.
Five focus groups were held with family physicians (n = 39), two focus groups (n = 16) with nurses from different care settings (nursing home, home care and hospital) and one with nursing home nurses (n = 7) in Belgium.
Participants indicated that although they considered death at home or in the nursing home of residence the most preferable outcome, there are a number of scenarios that they consider to justify a hospital admission at the end of life: when the patient prefers a hospital admission, when the caring capacity of the care setting is considered to be inadequate and when one of a number of acute medical situations occurs.
A number of situations have been identified in which nurses and family physicians consider a hospital admission to be justified. Adequate advance care planning and improved psychosocial support to both family and professional caregivers could reduce the number of hospital deaths.
There is a popular belief that the professional–patient relationship is a prerequisite in the provision of psychosocial support. Studies suggest that professionals must know, or be familiar with, a patient in order to effectively provide psychosocial support.
To examine the association between familiarity and the provision of psychosocial care by professionals.
A mixed-methods study involving participant observation, interviews and organisational and documentary analysis was conducted over 8 months in an inpatient hospice setting.
In total, 38 nurses (registered and auxiliary) and 47 patients were included in a maximum variation sampling strategy. Data were analysed using both qualitative and quantitative techniques.
The data disconfirm the belief that familiarity is either a necessary or sufficient condition for the provision of psychosocial support. Nurses familiar with patients did not necessarily respond to patients’ psychosocial needs, and nurses with no prior contact with the patient immediately dealt with psychosocial needs.
Psychosocial support can be provided on a patient’s first contact with a clinician and does not rely on building a professional–patient relationship. This suggests that high-quality psychosocial care can be provided in the short time frame available to palliative care clinicians.
Psychosocial factors are a major determinant of well-being in patients with advanced disease. However, the development of valid and reliable measures of meaningful and relevant outcomes and randomized controlled trials to assess the impact of novel interventions are relatively recent accomplishments.
To discuss significant developments in psychosocial research, including work of the author, in palliative populations and to identify areas where uncertainty and controversy persist.
The impact of systematic research on psychosocial factors in palliative care over the past four decades is discussed. Particular attention is paid to the development of relevant measures of psychological outcomes and to the results of pilot studies and randomized controlled trials of psychosocial interventions.
A variety of factors, including methodological limitations, protective attitudes of health-care providers, and the progressive deterioration of patients with terminal disease, have presented obstacles to psychosocial research in palliative care. The more recent development of valid and reliable measures of psychological distress and psychological well-being has significantly advanced research in the field. Pilot studies and randomized controlled trials of psychosocial interventions have yielded promising results, although the demonstrated impact on primary outcomes in these studies has typically been modest.
Psychosocial research in palliative care has grown in rigor and volume over the past several decades, and a variety of novel interventions have been developed and evaluated. However, the findings from this research have only begun to have an impact on clinical practice in palliative care.
The relationship between performance status and death among cancer patients has been of increasing interest over the past years. However, few studies have implemented statistical models that adequately capture the longitudinal nature of performance status assessments collected under intermittent observation.
The main research aims were to examine the association between performance status and death and to determine the probability of deterioration in performance status over time.
This was a population-based longitudinal study among adult outpatients diagnosed with cancer. Throughout their observation period, all patients were repeatedly assessed for performance status using an 11-point scale with a score of 100 being the best, 10 being the worst and 0 representing death. A Markov multistate model accounting for intermittent observation was implemented in which each score represented a distinct state in the model.
The cohort consisted of 27,739 patients with over 157,000 assessments. The rate of transition to death increases with a quadratic trend as performance status declines. The 1-month and 3-month probability of deterioration also increases with a quadratic trend as performance status declines. The relative rate of transition to death decreases as we compare lower scores (relative rate = 2.20 for comparing scores 90 vs 100 and relative rate = 1.23 for comparing scores 10 vs 20).
There is a significant relationship between performance status and rate of transition to death. The Markov multistate model provides a comprehensive understanding of the shape of this relationship, which facilitates the interpretation of performance status and provides strength in its use as a prognostic tool in a clinical setting.
The Mental Adjustment to Cancer Scale is an assessment tool commonly used to measure coping in cancer patients, which characterises adaptive coping under the label of ‘fighting spirit’.
This study explores adaptation in patients with advanced cancer, by examining the factor structure of the Mental Adjustment to Cancer Scale. Further aims were to examine associations between types of coping and psychological outcomes measured at the same time (time 1) and 4 weeks after referral to palliative care services (time 2).
A cross-sectional study with a follow-up assessment 4 weeks later. Factor analysis examined the structure of the Mental Adjustment to Cancer Scale at time 1.
A total of 275 patients with advanced cancer receiving palliative care, of whom 193 took part at follow-up.
This study provided evidence for the internal consistency and validity of a new scale of ‘acceptance and positivity’ for use in advanced cancer patients. Patients with a desire for hastened death had lower acceptance and positivity, and patients with higher global quality of life reported a higher level. Social support was positively associated with acceptance and positivity. Higher scores on the acceptance and positivity scale were associated with reduced odds of a desire for hastened death at time 2.
Adaptation to advanced cancer differs from adaptation to early stage cancer, comprising a general acceptance of the illness and trying to make the most of the time that is left. Individuals with low social support were less likely to evidence appropriate adaptation to their illness.
World Health Organization’s essential drugs list can control the highly prevalent HIV-related pain and symptoms. Availability of essential medicines directly influences clinicians’ ability to effectively manage distressing manifestations of HIV.
To determine the availability of pain and symptom controlling drugs in East Africa within President’s Emergency Plan for AIDS Relief–funded HIV health care facilities.
Directly observed quantitative health facilities’ pharmacy stock review. We measured availability, expiration and stock-outs of specified drugs required for routine HIV management, including the World Health Organization pain ladder.
A stratified random sample in 120 President’s Emergency Plan for AIDS Relief–funded HIV care facilities (referral and district hospitals, health posts/centres and home-based care providers) in Kenya and Uganda.
Non-opioid analgesics (73%) and co-trimoxazole (64%) were the most commonly available drugs and morphine (7%) the least. Drug availability was higher in hospitals and lower in health centres, health posts and home-based care facilities. Facilities generally did not use minimum stock levels, and stock-outs were frequently reported. The most common drugs had each been out of stock in the past 6 months in 47% of facilities stocking them. When a minimum stock level was defined, probability of a stock-out in the previous 6 months was 32.6%, compared to 45.5% when there was no defined minimum stock level (2 = 5.07, p = 0.024).
The data demonstrate poor essential drug availability, particularly analgesia, limited by facility type. The lack of strong opioids, isoniazid and paediatric formulations is concerning. Inadequate drug availability prevents implementation of simple clinical pain and symptom control protocols, causing unnecessary distress. Research is needed to identify supply chain mechanisms that lead to these problems.
Medical care at night for patients with do-not-resuscitate orders and the practice patterns of the on-call residents have rarely been reported.
To evaluate the after-hours physician care for patients with do-not-resuscitate orders in the general medicine ward.
Observational study.
This study was conducted at an urban, university-affiliated academic medical center in Taiwan. The night shift nurses consecutively recorded every event that required calling the duty residents. Patients with and without a do-not-resuscitate order were compared in demographics, reasons for calling, residents’ response, and nurses’ satisfaction. A standard report form was established for the nurses to record events.
From October 2009 to September 2010, 1379 inpatients contributed to 456 after-hours calls. do-not-resuscitate patients accounted for 256 (18.7%) of all inpatients, and 160 (35.1%) of all after-hours calls. The leading reason for calls was abnormal vital signs, which was significantly higher for patients with do-not-resuscitate orders compared to patients without a do-not-resuscitate order (64.4% vs 36.1%, p < 0.001). The pattern of residents’ responses showed a significant difference with more bedside visits for patients with do-not-resuscitate orders (p < 0.001). The nurses were usually satisfied with the residents’ management of both groups.
Abnormal vital sign, rather than symptom, was the leading reason for after-hours calls. The existence of do-not-resuscitate order produced different medical needs and physician workload. Patients with do-not-resuscitate orders accounted for one-third of night calls and nearly half of bedside visits by on-call residents and may require a different care approach.
While there have been some studies looking at the impact on quality of life of patients with idiopathic pulmonary fibrosis, to date no qualitative research looking at the specialist palliative needs of these patients has been conducted.
This study aims to explore the specialist palliative care needs of people living with end-stage progressive idiopathic fibrotic interstitial lung disease.
In total, 18 qualitative semi-structured in-depth interviews were conducted with patients, their informal caregivers and health professionals across two specialist interstitial lung disease centres in London and in the community.
Many participants reported uncontrolled symptoms of shortness of breath, cough and insomnia, which profoundly impacted every part of patients’ and informal caregivers’ lives. Psychologically, patients were frustrated and angry at the way in which their illness severely limited their ability to engage in activities of daily living and compromised their independence. Furthermore, both patients and informal caregivers also reported that the disease seriously affected family relationships where strain was pronounced. There was varied knowledge and confidence among health professionals in managing symptoms, and psychosocial needs were often underestimated.
This study is the first of its kind to examine in depth the impact of symptoms and psychosocial needs revealing the profound effect on every aspect of progressive idiopathic fibrotic interstitial lung disease patients’ and informal caregivers’ lives. Education and guidance of appropriate palliative care interventions to improve symptom control are needed. A case conference intervention with individualised care plans may help in addressing the substantial symptom control and psychosocial needs of these patients and informal caregivers.
Validated quality indicators can help health-care professionals to evaluate their medical practices in a comparative manner to deliver optimal clinical care. No international set of quality indicators to measure the organizational aspects of palliative care settings exists.
To develop and validate a set of structure and process indicators for palliative care settings in Europe.
A two-round modified RAND Delphi process was conducted to rate clarity and usefulness of a previously developed set of 110 quality indicators.
In total, 20 multi-professional palliative care teams of centers of excellence from seven European countries.
In total, 56 quality indicators were rated as useful. These valid quality indicators concerned the following domains: the definition of a palliative care service (2 quality indicators), accessibility to palliative care (16 quality indicators), specific infrastructure to deliver palliative care (8 quality indicators), symptom assessment tools (1 quality indicator), specific personnel in palliative care services (9 quality indicators), documentation methodology of clinical data (14 quality indicators), evaluation of quality and safety procedures (1 quality indicator), reporting of clinical activities (1 quality indicator), and education in palliative care (4 quality indicator).
The modified RAND Delphi process resulted in 56 international face-validated quality indicators to measure and compare organizational aspects of palliative care. These quality indicators, aimed to assess and improve the organization of palliative care, will be pilot tested in palliative care settings all over Europe and be used in the EU FP7 funded IMPACT project.
Heart failure is a common condition with a significant physical and psychological burden for patients and their families.
It is well recognised that palliative care is important in patients with advanced heart failure.
Heart failure patients have limited access to palliative care services. Barriers to palliative care include difficult prognostication due to the unpredictable disease trajectory and inadequate initiation of conversations about end-of-life care.
There are gaps in the evidence for symptom control, especially for symptoms other than pain or dyspnoea, but recommendations are becoming increasingly evidence based.
There are challenges to research in this area although progress is being made with increasing numbers of trials and use of novel research methods. Integrated models of care based on symptom triggers rather than prognosis are recommended. At the centre is excellent communication both with the patient and between services to ensure the best possible care.
The physical and psychosocial needs of patients with chronic non-malignant lung disease are comparable to those with lung cancer. This article will focus on chronic obstructive pulmonary disease, interstitial lung disease and cystic fibrosis as examples of life-limiting, non-curable and non-malignant lung diseases.
Recent national guidance has demanded that palliative care is inclusive of all patients with life-limiting disease, irrespective of diagnosis, and that specialist palliative care teams are involved in the management of patients on a basis of need rather than prognosis.
Despite medical therapy, most patients with moderate to severe chronic obstructive pulmonary disease, interstitial lung disease and cystic fibrosis experience pain, fatigue and dyspnoea, with the majority not getting relief from dyspnoea towards the end of life. Furthermore, dyspnoea causes social isolation and difficulty performing activities of daily living and impairs quality of life. There is an increasing evidence base for the assessment of supportive and palliative care needs, symptom interventions, prognostication, models of service delivery and implications of these for clinical practice and research in non-malignant lung diseases.
Despite advances, much still remains unknown regarding assessment, management and prognostication in individual chronic non-malignant lung diseases. Although different service models are being used in clinical practice, the optimal model(s) of service delivery remain unknown.
We describe key areas for further research, which include the need for large, high-quality trials of pharmacological and non-pharmacological interventions and their combinations as well as evaluation of the efficacy and cost-effectiveness of models of care. As access to palliative care is poor for these patients, the barriers to referral need to be understood and reduced, which along with effective working between palliative care teams, with respiratory services backup, should optimise delivery of care in patients with life-limiting non-malignant lung disease.
Dementia is a life-limiting disease without curative treatments. Patients and families may need palliative care specific to dementia.
To define optimal palliative care in dementia.
Five-round Delphi study. Based on literature, a core group of 12 experts from 6 countries drafted a set of core domains with salient recommendations for each domain. We invited 89 experts from 27 countries to evaluate these in a two-round online survey with feedback. Consensus was determined according to predefined criteria. The fourth round involved decisions by the core team, and the fifth involved input from the European Association for Palliative Care.
A total of 64 (72%) experts from 23 countries evaluated a set of 11 domains and 57 recommendations. There was immediate and full consensus on the following eight domains, including the recommendations: person-centred care, communication and shared decision-making; optimal treatment of symptoms and providing comfort (these two identified as central to care and research); setting care goals and advance planning; continuity of care; psychosocial and spiritual support; family care and involvement; education of the health care team; and societal and ethical issues. After revision, full consensus was additionally reached for prognostication and timely recognition of dying. Recommendations on nutrition and dehydration (avoiding overly aggressive, burdensome or futile treatment) and on dementia stages in relation to care goals (applicability of palliative care) achieved moderate consensus.
We have provided the first definition of palliative care in dementia based on evidence and consensus, a framework to provide guidance for clinical practice, policy and research.
Why do many patients not die at their preferred location?
Analyze system-level characteristics influencing the ability to implement best practices in delivering care for terminally ill adults (barriers and facilitators).
Cross-country comparison study from a "most similar—most different" perspective, triangulating evidence from a scoping review of the literature, document analyses, and semi-structured key informant interviews.
Case study of Canada, England, Germany, and the United States.
While similar with regard to leading causes of death, patient needs, and potential avenues to care, different models of service provision were employed in the four countries studied. Although hospice and palliative care services were generally offered with standard care along the disease continuum and in various settings, and featured common elements such as physical, psycho-social, and spiritual care, outcomes (access, utilization, etc.) varied across jurisdictions. Barriers to best practice service provision included legislative (including jurisdictional), regulatory (e.g. education and training), and financial issues as well as public knowledge and perception ("giving up hope") challenges. Advance care planning, dedicated and stable funding toward hospice and palliative care, including caregiver benefits, population aging, and standards of practice and guidelines to hospice and palliative care, were identified as facilitators.
Successful implementation of effective and efficient best practice approaches to care for the terminally ill, such as shared care, requires concerted action to align these system-level characteristics; many factors were identified as being essential but not sufficient. Policy implementation needs to be tailored to the respective health-care system(s), monitored, and fine-tuned.
Many patient-reported outcome measures have been developed in the past two decades, playing an increasingly important role in palliative care. However, their routine use in practice has been slow and difficult to implement.
To systematically identify facilitators and barriers to the implementation of patient-reported outcome measures in different palliative care settings for routine practice, and to generate evidence-based recommendations, to inform the implementation process in clinical practice.
Systematic literature review and narrative synthesis.
Medline, PsycInfo, Cumulative Index to Nursing and Allied Health Literature, Embase and British Nursing Index were systematically searched from 1985. Hand searching of reference lists for all included articles and relevant review articles was performed.
A total of 3863 articles were screened. Of these, 31 articles met the inclusion criteria. First, data were integrated in the main themes: facilitators, barriers and lessons learned. Second, each main theme was grouped into either five or six categories. Finally, recommendations for implementation on outcome measures at management, health-care professional and patient levels were generated for three different points in time: preparation, implementation and assessment/improvement.
Successful implementation of patient-reported outcome measures should be tailored by identifying and addressing potential barriers according to setting. Having a coordinator throughout the implementation process seems to be key. Ongoing cognitive and emotional processes of each individual should be taken into consideration during changes. The educational component prior to the implementation is crucial. This could promote ownership and correct use of the measure by clinicians, potentially improving practice and the quality of care provided through patient-reported outcome measure data use in clinical decision-making.
Patients with end-stage kidney disease can have a significant symptom burden with complex co-morbidities. Compounding this is the choice between dialysis and conservative management.
For individuals with end-stage kidney disease, palliative care can provide support with symptom management, advance care planning and psychological support and education for both patients and their families. Optimum management may be achieved through collaboration between renal and palliative care professionals, combining their different skills in addressing symptom and medication management. Palliative and supportive care must be patient-centred to be effective. Multidisciplinary cross-organisational input is central to address the complex care needs of these patients, particularly for those in the community.
There is growing awareness of the need for research into the palliative care needs of those with end-stage kidney disease. Research has shown that patients receiving dialysis may prioritise quality of life over survival time, partly due to the constraints that they feel dialysis imposes on them. Systematic study of those opting for a conservative management pathway rather than dialysis is beginning to happen.
Research is required into what underpins the preferences and priorities of patients with end-stage kidney disease to provide them with the best palliative and supportive care.
As more patients opt to follow the conservative pathway for their advanced renal disease, a change in service provision is required, with greater regular inclusion of palliative and supportive needs to address the gap in the care provision for this growing group.
Previous end-of-life cancer research has shown an association between increased family physician continuity of care and reduced use of acute care services; however, it did not focus on a homecare population or control for homecare nursing.
Among end-of-life homecare cancer patients, to investigate the association of family physician continuity with location of death and hospital and emergency department visits in the last 2 weeks of life while controlling for nursing hours.
Retrospective population-based cohort study.
Cancer patients with ≥1 family physician visit in 2006 from Ontario, Canada. Family physician continuity of care was assessed using two measures: Modified Usual Provider of Care score and visits/week. Its association with location of death and hospital and emergency department visits in the last 2 weeks of life was examined using logistic regression.
Of 9467 patients identified, the Modified Usual Provider of Care score demonstrated a dose–response relationship with increasing continuity associated with decreased odds of hospital death and visiting the hospital and emergency department in the last 2 weeks of life. More family physician visits/week were associated with lower odds of an emergency department visit in the last 2 weeks of life and hospital death, except for patients with greater than 4 visits/week, where they had increased odds of hospitalizations and hospital deaths.
These results demonstrate an association between increased family physician continuity of care and decreased odds of several acute care outcomes in late life, controlling for homecare nursing and other covariates.
Health-care costs are growing, with little population-based data about people’s priorities for end-of-life care, to guide service development and aid discussions.
We examined variations in people’s priorities for treatment, care and information across seven European countries.
Telephone survey of a random sample of households; we asked respondents their priorities if ‘faced with a serious illness, like cancer, with limited time to live’ and used multivariable logistic regressions to identify associated factors.
Members of the general public aged ≥16 years residing in England, Flanders, Germany, Italy, the Netherlands, Portugal and Spain.
In total, 9344 individuals were interviewed. Most people chose ‘improve quality of life for the time they had left’, ranging from 57% (95% confidence interval: 55%–60%, Italy) to 81% (95% confidence interval: 79%–83%, Spain). Only 2% (95% confidence interval: 1%–3%, England) to 6% (95% confidence interval: 4%–7%, Flanders) said extending life was most important, and 15% (95% confidence interval: 13%–17%, Spain) to 40% (95% confidence interval: 37%–43%, Italy) said quality and extension were equally important. Prioritising quality of life was associated with higher education in all countries (odds ratio = 1.3 (Flanders) to 7.9 (Italy)), experience of caregiving or bereavement (England, Germany, Portugal), prioritising pain/symptom control over having a positive attitude and preferring death in a hospice/palliative care unit. Those prioritising extending life had the highest home death preference of all groups. Health status did not affect priorities.
Across all countries, extending life was prioritised by a minority, regardless of health status. Treatment and care needs to be reoriented with patient education and palliative care becoming mainstream for serious conditions such as cancer.
The Delirium Observation Screening Scale (DOS) is designed to detect delirium by nurses’ observations and has shown good psychometric properties. Its use in palliative care unit patients has not been studied.
To determine diagnostic and concurrent validity, internal consistency, and user-friendliness of the Delirium Observation Screening Scale administered by bedside nurses in palliative care unit patients.
In this descriptive study, psychometric properties of the Delirium Observation Screening Scale were tested by comparing the performance on the Delirium Observation Screening Scale (bedside nurses) to the algorithm of the Confusion Assessment Method and the Delirium Index (DI) (researchers). Paired observations were collected on three time points. Afterward, the user-friendliness of the Delirium Observation Screening Scale was determined by bedside nurses using a questionnaire.
In total, 48 patients were recruited from one palliative care unit (PCU) of a university hospital. Of the 14 eligible bedside nurses of the palliative care unit, 10 participated in the study.
Delirium was present in 22.9% of patients. Diagnostic validity of the Delirium Observation Screening Scale was very good (area under the curve = 0.933), with 81.8% sensitivity, 96.1% specificity, 69.2% positive, and 98% negative predictive value. Concurrent validity of the Delirium Observation Screening Scale with the Delirium Index was moderate (rSpearman = 0.53, p = 0.001). The Cronbach’s alpha for all Delirium Observation Screening Scale shift scores was 0.772. Generally, bedside nurses experienced the Delirium Observation Screening Scale as user-friendly. However, most Delirium Observation Screening Scale items (n = 11/13 items) need verbally active patients to perform the observations correctly.
The Delirium Observation Screening Scale can be used for delirium screening in verbally active palliative care unit patients. The scale was rated as easy to use and relevant. Further validation studies in this population are required.
Family members are commonly involved in end-of-life decision making and typically involved in inpatient palliative care consultations. Although much research has documented patient outcomes following inpatient palliative care consultation, little is known about family member perceptions of the consultation.
The purpose of this study was to determine how inpatient palliative care consultations impacted family members’ understanding of the patient’s condition, knowledge of available care options, and decision-making ability.
An exploratory, qualitative study was conducted employing individual interviews among family members of seriously ill patients, recruited purposively. Interviews were conducted in person, at the hospital, or via telephone, using a semistructured protocol.
Family members of seriously ill patients were recruited from a nonprofit, community hospital.
Interviews were conducted among 23 family members. Four themes were identified and included: perceived qualities of the inpatient palliative care consultation, family readiness, impact on decision-making process, and focus on comfort and quality of life. While most comments reflected positive aspects of the inpatient palliative care consult, such as improved pain control and communication, and increased access to medical professionals and time to discuss patient conditions, some themes reflected a lack of adequate preparation for the inpatient palliative care consultation and readiness for discussing prognosis.
Family members report discussion with the inpatient palliative care team results in improved communication and knowledge, which contributes to decision-making ability. However, palliative care consultation may be improved by developing stronger protocols for introducing palliative care and by including the attending physician in the process to preclude conflicting, inconsistent information and recommendations.
Little is known about place of death in chronic neurological diseases. Mortality statistics are ideal for examining trends in place of death, but analyses are limited by coding rule changes.
To examine the relationship between place of death and underlying cause of death in Parkinson’s disease, multiple sclerosis and motor neurone disease and the impact of coding rule changes on analysis of place of death.
Population-based study. Proportion ratios for death in hospice, home, care home and hospital were calculated according to underlying cause of death, using multivariable Poisson regression.
Deaths in England (1993–2010) with any mention of Parkinson’s disease, multiple sclerosis or motor neurone disease as a cause of death, identified from national mortality data.
In this study, 125,242 patients with Parkinson’s disease, 23,501 with multiple sclerosis, and 27,030 with motor neurone disease were included. Home deaths ranged from 9.7% (Parkinson’s disease) to 27.1% (motor neurone disease), hospice deaths ranged from 0.6% (Parkinson’s disease) to 11.2% (motor neurone disease) and hospital deaths ranged from 43.4% (Parkinson’s disease) to 55.8% (multiple sclerosis). In Parkinson’s disease and multiple sclerosis, cancer as underlying cause of death increased likelihood of hospice death (proportion ratio (PR): 18.8, 95% confidence interval (CI) = 16.1–22.0; 8.88, 95% CI = 7.49–10.5) and home death (PR: 1.91, 95% CI = 1.80–2.04; 1.71, 95% CI = 1.56–1.88). Dementia as underlying cause of death increased likelihood of care home death in Parkinson’s disease (PR: 1.25, 95% CI = 1.19–1.32), multiple sclerosis (PR: 1.73, 95% CI = 1.22–2.45) and motor neurone disease (PR: 2.36, 95% CI = 1.31–4.27).
Underlying cause of death has a marked effect on place of death. The effects of coding rule changes are an essential consideration for all research using underlying cause of death to study place of death.
An imperative to assess the economic impact of care at the end of life is emerging in response to national policy developments in a number of settings. Current focus on health benefits in economic evaluation may not appropriately capture benefits of interventions at the end of life. No instruments are available for measuring such benefits for economic evaluation of end-of-life care.
To develop a descriptive system for a measure for use in economic evaluation of end-of-life care.
An initial phase of in-depth interviews was conducted to develop conceptual attributes for inclusion in a measure; a second phase of semi-structured repeat interviews with a subsample of informants was carried out to clarify and confirm the final set of attributes and to develop meaningful wording for a measure.
In total, 23 older people from three groups across the dying trajectory: older people (1) within the general population, (2) living in residential care and (3) receiving palliative care.
Interviews suggested that the important domains to include within this framework from the perspective of those approaching the end-of-life are choice/having a say in decision-making, love and affection/being with people who care, freedom from physical suffering, freedom from emotional suffering, dignity and self-respect, support, and preparation. A full descriptive system comprising seven questions, each representing one attribute, was developed.
Economic evaluation should reflect the broader benefits of end-of-life care. Although the supportive care measure developed here requires validation and valuation, it provides a substantial step forward in appropriate economic evaluation of end-of-life care.
Achieving home care and home death is increasingly used as an outcome measure of palliative care services.
To appraise the state of the science on dying at home.
Appraisal and narrative review developed from a plenary presentation at the European Association for Palliative Care (EAPC) 2012 meeting examining the research on variations and trends in place of death, factors associated with dying in the preferred place, presenting evidence on outcomes for those dying at home and suggesting future research questions.
Meeting patients’ preferences and creating home-like environments has been a major concern for hospice and palliative care since its inception. During the 20th century, in many countries, hospital deaths increased and home deaths reduced. Despite the fact that this trend has been halted or reversed in some countries (notably the United States, Canada and, more recently, the United Kingdom) in the last 5–20 years, a home death is still a distant reality for the majority, even though evidence shows it is the most commonly preferred place to die. Epidemiological studies identified factors associated with home death, including affluence, patients’ preferences, provision of home care and extended family support. Evidence about the benefits of home care is conflicting, but recent data suggest that holistic well-being may be greater at home.
We call for further analyses of variations in place of care and place of death and robust studies on how patients and families formulate and change preferences over time. Regular monitoring of outcomes, quality and costs of palliative home care is urged.
Understanding the need for palliative care is essential in planning services.
To refine existing methods of estimating population-based need for palliative care and to compare these methods to better inform their use.
(1) Refinement of existing population-based methods, based on the views of an expert panel, and (2) application/comparison of existing and refined approaches in an example dataset. Existing methods vary in approach and in data sources. (a) Higginson used cause of death/symptom prevalence, and using pain prevalence, estimates that 60.28% (95% confidence interval = 60.20%–60.36%) of all deaths need palliative care, (b) Rosenwax used the International Statistical Classification of Diseases and Related Health Problems–10th Revision (ICD-10) causes of death/hospital-use data, and estimates that 37.01% (95% confidence interval = 36.94%–37.07%) to 96.61% (95% confidence interval = 96.58%–96.64%) of deaths need palliative care, and (c) Gómez-Batiste used percentage of deaths plus chronic disease data, and estimates that 75% of deaths need palliative care.
All deaths in England, January 2006–December 2008, using linked mortality and hospital episode data.
Expert panel review identified changing practice (e.g. extension of palliative care to more non-cancer conditions), changing patterns of hospital/home care and multiple, rather than single, causes of death as important. We therefore refined methods (using updated ICD-10 causes of death, underlying/contributory causes, and hospital use) to estimate a minimum of 63.03% (95% confidence interval = 62.95%–63.11%) of all deaths needing palliative care, with lower and upper mid-range estimates between 69.10% (95% confidence interval = 69.02%–69.17%) and 81.87% (95% confidence interval = 81.81%–81.93%).
Death registration data using both underlying and contributory causes can give reliable estimates of the population-based need for palliative care, without needing symptom or hospital activity data. In high-income countries, 69%–82% of those who die need palliative care.
There is little guidance on the particular ethical concerns that research raises with a palliative care population.
To present the process and outcomes of a workshop and consensus exercise on agreed best practice to accommodate ethical issues in research on palliative care.
Consultation workshop using the MORECare Transparent Expert Consultation approach. Prior to workshops, participants were sent overviews of ethical issues in palliative care. Following the workshop, nominal group techniques were used to produce candidate recommendations. These were rated online by participating experts. Descriptive statistics were used to analyse agreement and consensus. Narrative comments were collated.
Experts in ethical issues and palliative care research were invited to the Cicely Saunders Institute in London. They included senior researchers, service providers, commissioners, researchers, members of ethics committees and policy makers.
The workshop comprised 28 participants. A total of 16 recommendations were developed. There was high agreement on the issue of research participation and high to moderate agreement on applications to research ethics committees. The recommendations on obtaining and maintaining consent from patients and families were the most contentious. Nine recommendations were refined on the basis of the comments from the online consultation.
The culture surrounding palliative care research needs to change by fostering collaborative approaches between all those involved in the research process. Changes to the legal framework governing the research process are required to enhance the ethical conduct of research in palliative care. The recommendations are relevant to all areas of research involving vulnerable adults.
Palliative care for people with life-limiting non-malignant disease is increasingly prioritised. People with end-stage chronic obstructive pulmonary disease are among a key group of non-cancer patients likely to benefit from specialist palliative care, but it remains uncertain whether the needs of this group are met by existing services.
To evaluate the experiences of patients with chronic obstructive pulmonary disease who accessed specialist palliative care.
Data from semi-structured interviews were analysed using a hermeneutic phenomenological approach.
Eight patients accessing specialist palliative care within one city in North West England.
Perceived benefits of specialist palliative care included reduced frequency of hospital admission, improved physical and psychological symptoms, reduced social isolation and a broadened physical environment. Participants were mainly aware of their poor prognosis, but discussion of referral to palliative care sometimes caused distress owing to the historical associations between dying and hospice care. Following engagement with services, participants’ perceptions changed: palliative care was associated with social inclusion and opportunities to engage in reciprocal and altruistic social action. Negative associations were replaced by uncertainty and anxiety about the prospect of discharge.
Much within existing services works well for people with chronic obstructive pulmonary disease, but opportunities to enhance palliative care for this underserved group remain. Future research might focus on prospectively evaluating the impact of key components of palliative care on core patient-centred outcomes. Additionally, work must be done to raise awareness of the benefits of specialist palliative care for non-cancer patients, as negative associations can form a barrier to access.
In most developed countries, acute hospitals play a significant role in palliative care provision and are the setting in which most people die. They are often the setting where a life-limiting diagnosis is made and where patients present when symptoms develop or when they are not well managed. Understanding the experiences of hospital admissions for people with a life-limiting illness and their families is essential in understanding the role acute hospitals play in providing palliative care.
The aim of this review is to synthesise current evidence regarding the experience of palliative care in an acute hospital setting from the perspectives of patient and family.
An integrative review was completed using standard processes followed by a process of data extraction and synthesis.
Using predefined search terms, literature was sourced from five electronic databases including MEDLINE (EBSCO), CINAHL, EMBASE, Cochrane and PsycINFO between January 1990 and November 2011. Reference lists from relevant articles were cross-checked and pertinent journals hand searched for articles.
In total, 32 articles were included in the review. Five recurring themes were identified from the synthesised data: symptom control and burden, communication with health professionals, decision-making related to patient care and management, inadequate hospital environment and interpersonal relationships with health professionals.
This review has identified that, largely as a result of study design, our knowledge of patient and family experiences of palliative care in an acute hospital remains limited to discrete aspects of care. Further research is required to explore the total patient and family experience taking into account all aspects of care including the potential benefits of hospital admissions in the last year of life.
Pain is one of the most frequent symptoms among patients with metastatic cancer, yet little is known about what patients with advanced cancer want from the management of their pain. Measuring the effectiveness of the management of pain is challenging as it is a subjective phenomenon and a multifaceted process. Determining how we currently define whether a patient with pain due to advanced cancer has controlled pain (or not) is important, particularly from the patient’s perspective.
To explore how patients with advanced cancer describe the control of pain and what they want from management of this pain.
Qualitative study using face-to-face interviews. Data were analysed using a constant comparison approach.
Purposive sample of patients with advanced cancer known to palliative care services.
Twelve interviews took place until saturation of data was achieved. Four themes emerged: maintaining role, self and independence; compromising/modifying expectations; role of healthcare professionals; and meaning of pain in context of advanced cancer.
Patients determined whether their pain was ‘controlled’ by whether or not they were able to perform activities or tasks and maintain relationships with family or friends, which determined themselves as individuals. Numerical rating scales did not appear to be useful for patients in measuring whether they are able to perform these activities or maintain a sense of control and independence. Individualised goal/task/role/activity setting for patients with advanced cancer pain may be useful to allow patients themselves to determine what they want from the ‘management’ of their pain.
Hospital is the most common place of cancer death but concerns regarding the quality of end-of-life care remain.
Preliminary assessment of the effectiveness of the Liverpool Care Pathway on the quality of end-of-life care provided to adult cancer patients during their last week of life in hospital.
Uncontrolled before–after intervention cluster trial.
The trial was performed within four hospital wards participating in the pilot implementation of the Italian version of the Liverpool Care Pathway programme. All cancer patients who died in the hospital wards 2–4 months before and after the implementation of the Italian version of Liverpool Care Pathway were identified. A total of 2 months after the patient’s death, bereaved family members were interviewed using the Toolkit After-Death Family Interview (seven 0–100 scales assessing the quality of end-of-life care) and the Italian version of the Views of Informal Carers - Evaluation of Services (VOICES) (three items assessing pain, breathlessness and nausea-vomiting).
An interview was obtained for 79 family members, 46 (73.0%) before and 33 (68.8%) after implementation of the Italian version of Liverpool Care Pathway. Following Italian version of Liverpool Care Pathway implementation, there was a significant improvement in the mean scores of four Toolkit scales: respect, kindness and dignity (+16.8; 95% confidence interval = 3.6–30.0; p = 0.015); family emotional support (+20.9; 95% confidence interval = 9.6–32.3; p < 0.001); family self-efficacy (+14.3; 95% confidence interval = 0.3–28.2; p = 0.049) and coordination of care (+14.3; 95% confidence interval = 4.2–24.3; p = 0.007). No significant improvement in symptom’ control was observed.
These results provide the first robust data collected from family members of a preliminary clinically significant improvement, in some aspects, of quality of care after the implementation of the Italian version of Liverpool Care Pathway programme. The poor effect for symptom control suggests areas for further innovation and development.
Statistical analysis in palliative and end-of-life care research can be problematic due to high levels of missing data, attrition and response shift as disease progresses.
To develop recommendations about managing missing data, attrition and response shift in palliative and end-of-life care research data.
We used the MORECare Transparent Expert Consultation approach to conduct a consultation workshop with experts in statistical methods in palliative and end-of-life care research. Following presentations and discussion, nominal group techniques were used to produce recommendations about attrition, missing data and response shift. These were rated online by experts and analysed using descriptive statistics for consensus and importance.
In total, 20 participants attended the workshop and 19 recommendations were subsequently ranked. There was broad agreement across recommendations. The top five recommendations were as follows:
A taxonomy should be devised to define types of attrition. Types and amount of missing data should be reported with details of imputation methods. The pattern of missing data should be investigated to inform the imputation approach. A statistical analysis plan should be pre-specified in the protocol. High rates of attrition should be assumed when planning studies and specifying analyses.
The leading recommendation for response shift was for more research.
When designing studies in palliative and end-of-life care, it is recommended that high rates of attrition should not be seen as indicative of poor design and that a clear statistical analysis plan is in place to account for missing data and attrition.
There are limited data on the outcomes of elderly patients with chronic kidney disease undergoing renal replacement therapy or conservative management.
We aimed to compare survival, hospital admissions and palliative care access of patients aged over 70 years with chronic kidney disease stage 5 according to whether they chose renal replacement therapy or conservative management.
Retrospective observational study.
Patients aged over 70 years attending pre-dialysis clinic.
In total, 172 patients chose conservative management and 269 chose renal replacement therapy. The renal replacement therapy group survived for longer when survival was taken from the time estimated glomerular filtration rate <20 mL/min (p < 0.0001), <15 mL/min (p < 0.0001) and <12 mL/min (p = 0.002). When factors influencing survival were stratified for both groups independently, renal replacement therapy failed to show a survival advantage over conservative management, in patients older than 80 years or with a World Health Organization performance score of 3 or more. There was also a significant reduction in the effect of renal replacement therapy on survival in patients with high Charlson’s Comorbidity Index scores. The relative risk of an acute hospital admission (renal replacement therapy vs conservative management) was 1.6 (p < 0.05; 95% confidence interval = 1.14–2.13). A total of 47% of conservative management patients died in hospital, compared to 69% undergoing renal replacement therapy (Renal Registry data). Seventy-six percent of the conservative management group accessed community palliative care services compared to 0% of renal replacement therapy patients.
For patients aged over 80 years, with a poor performance status or high co-morbidity scores, the survival advantage of renal replacement therapy over conservative management was lost at all levels of disease severity. Those accessing a conservative management pathway had greater access to palliative care services and were less likely to be admitted to or die in hospital.
Data on deaths in the general wards of our hospital in 2007 revealed infrequent discussions on end-of-life care and excessive burdensome interventions.
A physician order form to withhold inappropriate life-sustaining interventions was initiated in 2009. The use of the form was facilitated by staff educational sessions and a palliative care consult service. This study aims to evaluate the impact of these interventions in 2010.
Retrospective medical chart review with comparisons was made for the following: baseline patient characteristics, orders concerning life-sustaining therapies, treatment provided in last 24 h of life, and discussion of specific life-sustaining therapies with patients and families.
This study included all adult patients who died in our hospital’s general wards in 2007 (N = 683) versus 2010 (N = 714).
There was an increase in orders to withhold life-sustaining therapies, such as cardiopulmonary resuscitation (66.2%–80.0%). There was a decrease in burdensome interventions such as antibiotics (44.9%–24.9%) and a small increase in palliative treatments such as analgesia (29.1%–36.7%). There were more discussions on the role of cardiopulmonary resuscitation with conversant patients (4.6%–10.2%) and families (56.5%–79.8%) (p-value all < 0.05). On multivariate analysis, the physician order form independently predicted orders to withhold cardiopulmonary resuscitation.
A multifaceted intervention of a physician order form, educational sessions, and palliative care consult service led to an improvement in documentation of end-of-life discussions and was associated with an increase in such discussions and less burdensome treatments. There were small improvements in the proportion of palliative treatments administered.
Clinicians and patients find prognosis and end-of-life care discussions challenging. Misunderstanding one’s prognosis can contribute to poor decision-making and end-of-life quality of life. A question prompt list (booklet of questions patients can ask clinicians) targeting these issues may help overcome communication barriers. None exists for end-of-life discussions outside the palliative care setting.
To develop/pilot a question prompt list facilitating discussion/planning of end-of-life care for oncology patients with advanced cancer from Australia and the United States and to explore acceptability, perceived benefits/challenges of using the question prompt list, suggestions for improvements and the necessity of country-specific adaptations.
An expert panel developed a question prompt list targeting prognosis and end-of-life issues. Australian/US semi-structured interviews and one focus group elicited feedback about the question prompt list. Transcribed data were analysed using qualitative methods.
Thirty-four patients with advanced cancer (15 Australian/19 US) and 13 health professionals treating such patients (7 Australian/6 US) from two Australian and one US cancer centre participated.
Most endorsed the entire question prompt list, though a minority queried the utility/appropriateness of some questions. Analysis identified four global themes: (1) reinforcement of known benefits of question prompt lists, (2) appraisal of content and suggestions for further developments, (3) perceived benefits and challenges in using the question prompt list and (4) contrasts in Australian/US feedback. These contrasts necessitated distinct Australian/US final versions of the question prompt list.
Participants endorsed the question prompt list as acceptable and useful. Feedback resulted in two distinct versions of the question prompt list, accommodating differences between Australian and US approaches to end-of-life discussions, highlighting the appropriateness of tailoring communication aides to individual populations.
Little is known about the attitudes of healthcare professional students’ perceived competence and confidence in treating those with dementia who are at the end of life.
To explore the attitudes of final year medical, nursing and pharmacy students towards people with dementia and to evaluate their perceived competence and confidence dealing with biomedical and psychosocial issues within the context of palliative care provision to patients with dementia.
Cross-sectional survey using a questionnaire.
Final-year students in each profession from Queen’s University Belfast (Northern Ireland) and the University of Iowa (USA) were recruited.
Three versions of an online questionnaire (containing the Attitudes to Dementia Questionnaire and a series of questions on end-of-life care in dementia) were distributed.
A total of 368 responses were received (response rate 42.3%). All respondents reported positive attitudes towards people with dementia. US nursing students reported significantly more positive attitudes than the medical students of United States and Northern Ireland. Medical students were more likely to report low confidence in discussing non-medical aspects of dying, whereas nursing students were most likely to feel prepared and confident to do this. Medical and nursing students reported low confidence with aspects of medication-related care; however, data from the pharmacy samples of Northern Ireland and United States suggested that these students felt confident in advising other healthcare professionals on medication-related issues.
While healthcare students hold positive attitudes towards people with dementia, some clinical tasks remain challenging and further basic training may be of benefit.
Internationally, policy calls for care homes to provide reliably good end-of-life care. We undertook a 20-month project to sustain palliative care improvements achieved by a previous intervention.
To sustain a high standard of palliative care in seven UK nursing care homes using a lower level of support than employed during the original project and to evaluate the effectiveness of this intervention.
Two palliative care nurse specialists each spent one day per week providing support and training to seven care homes in Scotland, United Kingdom; after death audit data were collected each month and analysed.
During the sustainability project, 132 residents died. In comparison with the initial intervention, there were increases in (a) the proportion of deceased residents with an anticipatory care plan in place (b) the proportion of those with Do Not Attempt Cardiopulmonary Resuscitation documentation in place and (c) the proportion of those who were on the Liverpool Care Pathway when they died. Furthermore, there was a reduction in inappropriate hospital deaths of frail and elderly residents with dementia. However, overall hospital deaths increased.
A lower level of nursing support managed to sustain and build on the initial outcomes. However, despite increased adoption of key end-of-life care tools, hospital deaths were higher during the sustainability project. While good support from palliative care nurse specialists and GPs can help ensure that key processes remain in place, stable management and key champions are vital to ensure that a palliative care approach becomes embedded within the culture of the care home.
Healthcare professionals’ perspectives on palliative care patients’ hope influence communication. However, these perspectives have hardly been examined.
To describe healthcare professionals’ perspectives on palliative care patients’ hope found in the literature.
The interpretative synthesis consisted of a quality assessment and thematic analysis of included articles.
Literature search of articles between January 1980 and July 2011 in PubMed, CINAHL, PsycINFO and EMBASE and references of included studies. Search strategy: (palliat* or hospice or terminal* in title/abstract or as subject heading) AND (hope* or hoping or desir* or optimis* in title or as subject heading).
Of the 37 articles, 31 articles were of sufficient quality. The majority of these 31 articles described perspectives of nurses or physicians. Three perspectives on hope of palliative care patients were found: (1) realistic perspective – hope as an expectation should be truthful, and healthcare professionals focused on adjusting hope to truth, (2) functional perspective – hope as coping mechanism should help patients, and professionals focused on fostering hope, and (3) narrative perspective – hope as meaning should be valuable for patients, and healthcare professionals focused on interpreting it.
Healthcare professionals who are able to work with three perspectives on hope may improve their communication with their palliative care patients, which leads to a better quality of care.
Stroke is a leading cause of death; between 20% and 30% of people die within 30 days of a stroke. High-quality palliative and end-of-life care are advocated for patients not expected to recover from stroke.
To explore the perspectives of health professionals regarding the provision of palliative and end-of-life care in UK stroke units.
Qualitative focus groups and individual interviews were held with 66 health professionals working in UK specialist stroke units. Data were analysed thematically.
Three themes emerged from the data. Palliative care was recognised as an important component of stroke care; however, there was uncertainty when initiating transitions to palliative care in stroke, and issues were identified with the integration of acute stroke care and palliative care.
The findings provide encouraging evidence that palliative and end-of-life care have been adopted as key components of specialist stroke care in UK stroke units. However, many patients stand to benefit from earlier identification of palliative care need and a consideration of quality-of-life approaches during active care. Encouraging collaboration and partnership when working with specialist palliative care services would optimise palliative care service delivery and may provide patients and their families with greater opportunities for documenting and achieving preferences for care and achieving a better quality of death.
Ascites secondary to cancer has a dramatic effect on all aspects of patients’ lives. Healthcare professional surveys have shown that there is considerable variation in the management of ascites.
To explore patients’ experiences of living with ascites and its management.
Qualitative research study using digitally recorded semi-structured interviews.
Twelve adult patients with ascites who, between them, had undergone 47 paracentesis procedures in hospitals and/or specialist palliative care units in Southern England.
Symptoms were pain, discomfort and effects on appetite, digestion, breathing and mobility. All participants had experienced paracentesis in hospital or a specialist palliative care unit, and these experiences differed. They had views on what constituted a good procedure: setting, competence and pain control. They reported rapid improvement of symptoms after paracentesis. While some did not like the idea of a semi-permanent drain, those with them appreciated the convenience and not having to wait for repeated admissions or the recurrence of symptoms. The interval between ascitic taps was seen as a useful guide as to when a semi-permanent drain should be offered. Participants had mixed views on participation in a hypothetical randomised controlled trial of repeated ascitic taps versus semi-permanent drains.
Patients’ experiences of ascites management are variable and could be improved. These experiences can inform healthcare professionals. They have views on when semi-permanent drains should be offered and future research.
Changes in health care and an ageing population have meant that more people are dying in the acute hospital setting. While palliative care principles have resulted in quality care for the dying, many patients die in an acute care, still receiving aggressive/resuscitative care.
The aims were to explore nurses’ ‘recognition of’ and ‘responsiveness to’ dying patients and to understand the nurses’ influence on end-of-life care.
A qualitative approach was taken utilising non-participant observation to elicit rich data, followed by focus groups and individual semi-structured interviews for clarification.
This study was conducted in two acute medical wards in one health service, identified as having the highest rates of death, once palliative care and critical care areas were excluded. Twenty-five nurses consented to participate, and 20 episodes of observation were conducted.
Nurses took a passive role in recognising dying, providing active care until a medical officer’s declaration of dying. Ward design, nurse allocation and nurses’ attitude to death impacts patient care. End-of-life care in a single room can have negative consequences for the dying. Nurses demonstrated varying degrees of discomfort, indicating that they were underprepared for this role.
When patients are terminally ill, acknowledgement of dying is essential in providing appropriate care. It should not be assumed that all nurses are adequately prepared to provide dying care. Further work is necessary to investigate how the attitudes of nurses towards caring for dying patients in the acute hospital setting may impact care of the dying patient.
In the last 25 years, palliative care has made major progress as an interdisciplinary specialty that addresses quality-of-life issues for patients with life-limiting illnesses and their families. Research by numerous investigators has contributed to our increasing body of knowledge to support an evidence-based practice.
We highlight some lessons learned by our group in the process of conducting palliative care research, focusing in particular on symptom assessment; the management of pain, fatigue, cachexia, dyspnea, delirium, and opioid-induced neurotoxicity; and outcomes of our palliative care program.
Narrative review of selected literature, focusing on studies conducted by our group.
This article is based on the Second Vittorio Ventafridda Memorial Lecture by Dr Eduardo Bruera, delivered at the European Association for Palliative Care, Trondheim, Norway on 8 June 2012.
For each topic, we review some of the pivotal studies in palliative care, discuss the challenges in research design, and outline possible directions for future research.
We conclude by sharing some of what we learned about the processes, pearls, and pitfalls of palliative care research.
Recent studies have concluded that there is significant potential to reduce the extent of ‘inappropriate’ hospitalisations among patients with palliative care needs. However, the nature of, and reasons for, inappropriate hospitalisations within a palliative care context is under-explored.
To explore the opinions of ‘generalist’ palliative care providers regarding the nature of, and reasons for, inappropriate admissions among hospital inpatients with palliative care needs.
Qualitative study with data collected via individual interviews and focus groups.
Participants (n = 41) comprised ‘generalist’ palliative care providers working in acute hospital and community settings.
One District Health Board in an urban area of New Zealand.
The majority of participants discussed ‘appropriateness’ in relation to their own understanding of a good death, which typically involved care being delivered in a ‘homely’ environment, from known people. Differing attitudes among cultural groups were also evident. The following reasons for inappropriate admissions were identified: family carers being unable to cope, the ‘rescue culture’ of modern medicine, the financing and availability of community services and practice within aged residential care.
On the basis of our findings, we recommend a shift to the term ‘potentially avoidable’ admission rather than ‘inappropriate admission’. We also identify an urgent need for debate regarding the role of the acute hospital within a palliative care context. Interventions to reduce hospital admissions within this population must target societal understandings of death and dying within the context of medicalisation, as well as take into account cultural and ethnic diversity in attitudes, if they are to be successful.
Not much is known about the process of end-of-life decision-making for people with intellectual disabilities.
To clarify the process of end-of-life decision-making for people with intellectual disabilities from the perspective of patient representatives.
A qualitative study based on semi-structured interviews, recorded digitally and transcribed verbatim. Data were analysed using Grounded Theory procedures.
We interviewed 16 patient representatives after the deaths of 10 people with intellectual disabilities in the Netherlands.
The core category ‘Deciding for someone else’ describes the context in which patient representatives took end-of-life decisions. The patient representatives felt highly responsible for the outcomes. They had not involved the patients in the end-of-life decision-making process, nor any professionals other than the doctor. The categories of ‘Motives’ and ‘Support’ were connected to the core category of ‘Deciding for someone else’. ‘Motives’ refers to the patient representatives’ ideas about quality of life, prevention from suffering, patients who cannot understand the burden of interventions and emotional reasons reported by patient representatives. ‘Support’ refers to the support that patient representatives wanted the doctors to give to them in the decision-making process.
From the perspective of the patient representatives, the process of end-of-life decision-making can be improved by ensuring clear roles and an explicit description of the tasks and responsibilities of all participants. Regular discussion between everyone involved including people with intellectual disabilities themselves can improve knowledge about each other’s motives for end-of-decisions and can clarify expectations towards each other.
Palliative care is rarely being offered to patients with Parkinson’s disease.
To assess symptom prevalence, severity and palliative care needs in advanced stages of Parkinsonism.
A cross-sectional survey using a palliative care assessment tool, the Palliative Outcome Scale was administered to patients.
Eight-two patients with a diagnosis of idiopathic Parkinson’s disease, multiple systems atrophy or progressive supranuclear palsy were included in the study.
Their mean age and disease stages 3–5 Hoehn and Yahr were 67 years and 4.1, respectively. Patients reported a mean of 10.7 (standard deviation = 3.9) physical symptoms. Over 80% had pain, fatigue, day time somnolence and problems with mobility. Other symptoms in 50%–80% included constipation, loss of bladder control, swallowing difficulties, drooling, breathlessness and sleep problems. Symptoms rated as causing severe problems were pain, fatigue, constipation and drooling. Assessment of mood revealed 70% of the patients felt anxiety and 60% had felt depressed. Eight-five per cent felt their families were anxious or worried about them. Thirty-eight per cent would have liked more information and 42% had practical problems that still needed to be addressed. There was a positive correlation between number of symptoms and disease severity (r = 0.39, p = 0.01). The total mean Palliative Outcome Scale score was 13.6 (standard deviation = 6.1), suggesting moderate palliative care needs.
This is the first study to describe the care needs of people with Parkinson’s disease using the Palliative Outcome Scale tool. The burden of symptoms and concerns was high in advanced stages of disease. It might be appropriate that people severely affected by these conditions should be considered for referral to specialist palliative care services.
Neuropathic pain causes greater pain intensity and worse quality of life than nociceptive pain. There are no published data that confirm this in the cancer population.
We hypothesised that patients with neuropathic cancer pain had more intense pain, experienced greater suffering and were treated with more analgesics than those with nociceptive cancer pain, and a neuropathic pain screening tool, painDETECT, would perform as well in those with cancer pain as is reported in those with non-cancer pain.
The data were obtained from an international cross-sectional observational study.
A total of 1051 patients from inpatients and outpatients, with incurable cancer completed a computerised assessment on symptoms, function and quality of life. In all, 17 centres within eight countries participated. Medical data were recorded by physicians. Pain type was a clinical diagnosis recorded on the Edmonton Classification System for Cancer Pain.
Of the patients, 670 had pain: 534 with nociceptive pain, 113 with neuropathic pain and 23 were unclassified. Patients with neuropathic cancer pain were significantly more likely to be receiving oncological treatment, strong opioids and adjuvant analgesia and have a reduced performance status. They reported worse physical, cognitive and social function. Sensitivity and specificity of painDETECT for identifying neuropathic cancer pain was less accurate than when used in non-cancer populations.
Neuropathic cancer pain is associated with a negative impact on daily living and greater analgesic requirements than nociceptive cancer pain. Validated assessment methods are needed to enable early identification of neuropathic cancer pain, leading to more appropriate treatment and reduced burden on patients.
The evidence supporting pharmacological treatment of death rattle is poor; yet, anticholinergic drugs feature in end-of-life care pathways and guidelines worldwide as a treatment option.
This qualitative arm of a wider study aimed to explore important issues which health-care professionals associated with decision-making to prescribe or administer anticholinergics at the end of life.
After purposive sampling, five focus groups were conducted. Discussions were audiotaped and transcribed verbatim.
Thirty medical and nursing personnel working in inpatient and community settings from two specialist palliative care units in the United Kingdom took part in the study.
Thematic analysis of transcripts from audiotapes revealed perceived pressures to prescribe and/or administer anticholinergics from colleagues and carers, and drugs were often prescribed or administered in order to be seen to ‘do something’, although the benefit in terms of therapeutic response was considered minimal. Familiarity with drug regimens and dosing was often based on personal experience. The monitoring of side effects of anticholinergics at the end of life was recognised as problematic and had little influence on prescribing and administration. There was also an indication that patients and carers in the community were more likely to receive timely verbal preparation and explanation around death rattle than those cared for in an inpatient setting.
The study raises questions about the routine inclusion of anticholinergic treatment in UK end of life care pathways for the treatment of death rattle.