Terms Of Palliative Care Research Articles

Appropriateness of end-of-life care for children with genetic and congenital conditions: a cohort study using routinely collected linked data.

This study aims to evaluate the appropriateness of end-of-life care for children with genetic and congenital conditions. This is a decedent cohort study. We used 6 linked, Belgian, routinely collected, population-level databases containing children (1-17) who died with genetic and congenital conditions in Belgium between 2010 and 2017. We measured 22 quality indicators, face-validated using a previously published RAND/UCLA methodology. Appropriateness of care was defined as the overall "expected health benefit" of given healthcare interventions within a healthcare system exceeding expected negative outcomes. In the 8-year study period, 200 children were identified to have died with genetic and congenital conditions. Concerning appropriateness of care, in the last month before death, 79% of children had contact with specialist physicians, 17% had contact with a family physician, and 5% received multidisciplinary care. Palliative care was used by 17% of the children. Concerning inappropriateness of care, 51% of the children received blood drawings in the last week before death, and 29% received diagnostics and monitoring (2 or more magnetic resonance imaging scans, computed tomography scans, or X-rays) in the last month. Conclusion: Findings suggest end-of-life care could be improved in terms of palliative care, contact with a family physician and paramedics, and diagnostics and monitoring in the form of imaging. What is Known: • Previous studies suggest that end-of life care for children with genetic and congenital conditions may be subject to issues with bereavement, psychological concerns for child and family, financial cost at the end of life, decision-making when using technological interventions, availability and coordination of services, and palliative care provision. Bereaved parents of children with genetic and congenital conditions have previously evaluated end-of-life care as poor or fair, and some have reported that their children suffered a lot to a great deal at the end of life. • However, no peer-reviewed population-level quality evaluation of end-of-life care for this population is currently present. What is New: • This study provides an evaluation of the appropriateness of end-of-life care for children who died in Belgium with genetic and congenital conditions between 2010 and 2017, using administrative healthcare data and validated quality indicators. The concept of appropriateness is denoted as relative and indicative within the study, not as a definitive judgement. • Our study suggests improvements in end-of-life care may be possible, for instance, in terms of the provision of palliative care, contact with care providers next to the specialist physician, and diagnostics and monitoring in terms of imaging (e.g., magnetic resonance imaging, computed tomography scans). Further empirical research is necessary, for instance, into unforeseen and foreseen end-of-life trajectories, to make definitive conclusions about appropriateness of care.

Barriers and facilitators in the provision of palliative care in adult intensive care units: a scoping review.

The provision of palliative care in the intensive care unit (ICU) is increasing. While some scholars have suggested the goals of palliative care to not be aligned with the ICU, some evidence show benefits of the integration. This review aimed to explore and synthesize research that identified barriers and facilitators in the provision of palliative care in the ICU. This review utilized Preferred Reporting Items for Systematic Reviews and Meta-Analyses Scoping Review guidelines based on population, concept, and context. We searched for eligible studies in five electronic databases (Scopus, PubMed, ProQuest, Science Direct, and Sage) and included studies on the provision of palliative care (concept) in the ICU (context) that were published in English between 2005-2021. We describe the provision of palliative care in terms of barriers and facilitators. We also describe the study design and context. A total of 14 papers was included. Several barriers and facilitators in providing palliative care in the ICU were identified and include lack of capabilities, family boundaries, practical issues, cultural differences. Facilitators of the provision of palliative care in an ICU include greater experience and supportive behaviors, i.e., collaborations between health care professionals. This scoping review demonstrates the breadth of barriers and facilitators of palliative care in the ICU. Hospital management can consider findings of the current review to better integrate palliative care in the ICU.

Palliative Care in Patients with Advanced Heart Failure: A Systematic Review.

Heart failure is a disease with survival estimates of around 10% after 10 years of the disease. Being a chronic and debilitatingillness, it is important to investigate the potential efficacy of a palliative care approach for these patients. The aim of this study is to systematically review the efficacy of integrating palliative care in patients with advanced heart failure, including the outcomes overall quality of life and well-being, overall symptom burden and possible specific symptoms, hospital admission rates and mortality. The MEDLINE, Cochrane, EMBASE and CINAHL databases were searched for articles published between January 2010 and December 2020 about palliative care interventions in patients with heart failure. Clinical studies with humans with symptomatic heart failure were included, comparing the integration of palliative care with usual cardiac care. The search protocol resulted in seven eligible studies for review and qualitative synthesis. The overall risk of bias within studies was moderate to high. Most studies demonstrated improvements with the integration of palliative care in terms of quality of life and reduction of admission rates. The evidence to support a significant improvement in overall symptom burden was not so robust among studies. Palliative care interventions seem, overall, to be significantly effective in patients with heart failure. Future studies with more rigorous study designs are needed, in order, to further develop the role of palliative care in heart failure patients.

Palliative care organization and staffing models in residential hospices: Which makes the difference?

BackgroundThe number of patients using palliative care services, particularly residential hospices, is increasing. Policymakers are urging these services to reflect on the most effective organizational strategies for meeting patients’ complex care needs. AimTo analyze the predictive power of staffing, structure and process indicators towards optimal control of patients’ clinically significant symptoms over time. DesignSecondary analysis of data from a multicentre prospective longitudinal observational study (PRELUdiHO) collected between November 2017 and September 2018. Setting/participantsAdult patients (n = 992) enrolled in 13 Italian residential hospices. MethodsTwo generalized estimating equations logistic models were built, both with number of hospice beds and length of stay as independent variables as well as, in one case, patient-to-healthcare worker ratios, and, in the other, health professionals’ qualification levels. Dependent variables were six not clinically significant (score<4) symptoms: pain, nausea, shortness of breath, feeling sad, feeling nervous, and ‘how you feel overall’, according to the Edmonton Symptom Assessment System revised (ESAS-r) scale. ResultsThe generalized estimating equations indicators on staff revealed the following ‘optimal’ model: Patient-to-Physician ratio (5.5:1–6.5:1); Patient-to-Nurse ratio (1.5:1–2.7:1); Patient-to-Nurse-Assistant ratio (4.1:1–6.3:1); with the most balanced staff composition including 19% physicians, 23% nurse assistants, and 58% registered nurses; hospice beds (12–25); length of stay (median = 12 days). This model predicted an up to four times greater likelihood of controlling all six ESAS-r symptoms over time. The generalized estimating equations model on the educational level of physicians and registered nurses showed that it was significantly associated with optimal patients’ symptom control during the entire hospice stay. ConclusionsThis study showed the exact skill-mix composition and proportions of palliative care team able to ensure optimal control of patients’ symptoms. The added value of physicians and nurses with a qualification in palliative care in terms of better patient outcomes reaffirmed the importance of education in guaranteeing quality care. Hospices with 12–25 beds, and recruitment methods guaranteeing at least 12-day stay ensured the most propitious organizational environment for optimal management of clinically significant symptoms. The transferability of these results mainly depends on whether the skills of health professionals in our `ideal' model are present in other contexts.Our results provide policymakers and hospice managers with specific, evidence-based information to support decision-making processes regarding hospice staffing and organization. Further prospective studies are needed to confirm the positive impact of this ‘optimal’ organizational framework on patient outcomes.

Association of Palliative Care with Days at Home and Healthcare Use in Patients with Advanced Chronic Obstructive Pulmonary Disease: A Cohort Study.

Rationale: Palliative care focuses on improving quality of life for patients with life-limiting conditions. Although previous studies have shown palliative care to be associated with reduced acute healthcare use in people with cancer and other illnesses, these findings may not generalize to patients with chronic obstructive pulmonary disease (COPD). Objectives: We examined the association between palliative care and rates of days at home, locations of death, and acute healthcare use in patients with COPD. Methods: We used health administrative databases in Ontario, Canada, to identify patients with advanced COPD hospitalized between April 2010 and March 2017 and followed up until March 2018. Patients who received palliative care were matched 1:1 with those who did not receive palliative care in terms of age, sex, long-term oxygen, previous COPD hospitalizations and propensity scores. Rate ratios (RR) were estimated by using Poisson models with generalized estimating equations to account for matching. Results: Among 35,492 patients, 1,788 (5%) received palliative care. In the matched cohort (1,721 pairs), people with COPD receiving palliative care had similar rates of days at home (RR, 1.01; 95% confidence interval [CI], 0.97-1.05) but were more likely to die at home (16.4% vs. 10.0%; P < 0.001) compared with those who did not receive palliative care. Rates of healthcare use were similar except for increased hospitalizations in the palliative care group (RR, 1.09; 95% CI, 1.01-1.18). Conclusions: Receipt of palliative care did not reduce days at home or healthcare use but was associated with a modest increase in the proportion who died at home. Future work should evaluate palliative care strategies designed specifically for patients with COPD.

South African paramedic perspectives on prehospital palliative care

BackgroundPalliative care is typically performed in-hospital. However, Emergency Medical Service (EMS) providers are uniquely positioned to deliver early palliative care as they are often the first point of medical contact. The aim of this study was to gather the perspectives of advanced life support (ALS) providers within the South African private EMS sector regarding pre-hospital palliative care in terms of its importance, feasibility and barriers to its practice.MethodsA qualitative study design employing semi-structured one-on-one interviews was used. Six interviews with experienced, higher education qualified, South African ALS providers were conducted. Content analysis, with an inductive-dominant approach, was performed to identify categories within verbatim transcripts of the interview audio-recordings.ResultsFour categories arose from analysis of six interviews: 1) need for pre-hospital palliative care, 2) function of pre-hospital healthcare providers concerning palliative care, 3) challenges to pre-hospital palliative care and 4) ideas for implementing pre-hospital palliative care. According to the interviewees of this study, pre-hospital palliative care in South Africa is needed and EMS providers can play a valuable role, however, many challenges such as a lack of education and EMS system and mindset barriers exist.ConclusionChallenges to pre-hospital palliative care may be overcome by development of guidelines, training, and a multi-disciplinary approach to pre-hospital palliative care.

Supporting the patients with advanced cancer and their family caregivers: what are their palliative care needs?

BackgroundThe impact and consequences of cancer on the patients and their family caregivers (FCs) are closely intertwined. Caregivers’ burdens can be increased due to the patients’ unmet needs and unresolved problems. Additionally, the caregivers’ unmet needs may adversely affect their own well-being and the patients’ health outcomes. This study aims to determine the palliative care needs and the factors associated with these needs in patients with advanced solid cancer and their FCs.MethodsIn a cross-sectional survey, 599 patients with advanced solid tumours and 599 FCs were recruited from the largest ambulatory cancer centre and the inpatient ward of the largest hospital in Singapore. Determinants of patients’ and FCs’ needs were assessed by the Comprehensive Needs Assessment Tool (CNAT) and CNAT-C respectively. Clinical characteristics of patients were obtained from medical records.ResultsThe FCs (median age 51 years) were younger than the patients (median age 62 years), and were mostly female (62.6%) whereas the gender distribution of patients was quite balanced (49.2% male and 50.8% female). Both patients and FCs had “information” and “practical support” in their top three domains of palliative care needs. The second highest domain of needs was “psychological problems” (16.4 ± 21.5) in patients and “health-care staff” (23.4 ± 26.5) in FCs. The item that had the highest need score in “information” domain for both patients and FCs was “financial support for patients, either from government and/ or private organizations”. Under clinical setting, the inpatients (19.2 ± 16.4) and their FCs (26.0 ± 19.0) tend to have higher needs than the outpatients (10.5 ± 12.1) and their FCs (14.7 ± 14.3). In terms of palliative care, higher total CNAT score was observed in both patients (16.6 ± 12.9 versus 13.3 ± 15.2) and their FCs (25.1 ± 18.6 versus 17.7 ± 16.7) who received palliative care. In terms of patients’ KPS scores, patients with lower KPS scores tend to have higher needs.ConclusionOverall, the findings confirm that patients with advanced cancer and their FCs have many palliative care needs irrespective of their clinical settings. Initiatives and interventions for the development of a comprehensive support system for both patients with advanced cancer and their FCs are warranted and can be derived from these findings.

Quality of care, spirituality, relationships and finances in older adult palliative care patients in Lebanon.

Despite making up a big proportion of the world population, older adults received little palliative care services. Moreover, palliative quality of care provided to older adults has been shown to be poor. Adequate clinician communication, familial support, and religious/spiritual support have been identified as main factors in providing good quality of care. The purpose of our study on Lebanese older adult palliative care patients is to assess the quality of palliative care in terms of access to care, patient-clinician relationship, and clinician-clinician communication, assess the degree of spirituality/religiousness of patients and their sense of purpose, to explore patients' relationships including friendships and social support and to assess the degree of financial hardship during the illness. An observational cross-sectional design was used in this study of hospitalized older adults in three major medical centers in Lebanon over a period of 2 years from 2015 to 2017. Key physicians from each of the three medical centers recruited participants into the study to obtain a convenience sample (N=203). Quality of care was measured using 20 selected items from the Needs at the End of life Screening Tool (NEST). Patients reported easy access to care expressed by low median item scores ranging from the lowest 1.0 pertaining to lack of a problematic doctor choice to the highest 3.0 for ease of securing a hospital bed. Difficulty expressing their feelings to their healthcare providers had an average median of 5.0 with other items on communication having higher medians. The sample considered themselves to be highly religious or spiritual with a median score of 9.0 and identified an inclination to be more religious or spiritual after their illness with a median of 7.0. Social support was found to be good and financial hardships had low median scores ranging from 3.0 to 5.0. Older adults receiving palliative care reported ease of access to medical care, average communication, good spiritual and social status and minimal financial hardships. The authors recommend integrating spiritual and social aspects into the patients' palliative care to improve quality of care and quality of life.

Palliative care as an emerging role for respiratory health professionals: Findings from a cross-sectional, exploratory Canadian survey

IntroductionRespiratory Health Professionals (RHPs) with specialty training in the management of asthma and COPD, often care for patients with advanced respiratory disease, who have less access to palliative care than patients with similar disease burden. The aims of this study were to: (i) explore the current and desired roles of RHPs in terms of palliative care and (ii) examine barriers to discussions with patients about palliative care.MethodsAn online survey addressing the aims of this study was developed and pilot tested. The survey was distributed nationally using the database of the Lung Association’s RESPTREC respiratory educator training program. Descriptive statistics were performed.ResultsA total of 123 completed surveys were returned, with respiratory therapists comprising the largest group of respondents. The majority indicated that end-of-life care was less than optimal for patients with advanced respiratory illnesses and agreed that palliative care should be a role of RHPs. Patient- and family-related barriers to having end-of-life discussions included: difficulty accepting prognosis, limitations and complications, and lack of capacity. For providers, the most important barriers were: lack of training, uncertainty about prognosis, and lack of time. The health care system barriers of concern were increasing demand for palliative care services and limited accessibility of palliative care for those with advanced respiratory diseases and difficulties in accurate prognostication for these conditions.DiscussionIncorporating a more defined role in palliative care was generally seen as a desirable evolution of the RHP role. A number of strategies to mitigate identified barriers to discussions with the patient are described. Better alignment of the services required with the needs of patients with advanced respiratory disease can be addressed in a number of ways.ConclusionsAs RHP roles continue to evolve, consideration should be given to the ways in which RHPs can contribute to improving the quality of care for patients with advanced respiratory disease. Building collaborations with RHPs, palliative care, and other existing health programs can ensure high quality of care. Creating and taking advantage of learning opportunities to build skills and comfort in using a palliative approach will benefit respiratory patients.

Palliative care education in the undergraduate medical curricula: students\u2019 views on the importance of, their confidence in, and knowledge of palliative care

BackgroundThe need for palliative care is increasing. Since almost every junior doctor will come across palliative care patients, it is important to include palliative care in the undergraduate curriculum. The objective of this research is to gather undergraduate students’ views on palliative care in terms of its importance, their confidence in and knowledge of the domain.MethodsFinal-year medical students at four Dutch medical faculties were surveyed. The questionnaire measured their views on the education they had received, their self-reported confidence in dealing with palliative care patients and their knowledge of palliative care.ResultsTwo hundred twenty-two medical students participated in this study. Students considered palliative care education relevant, especially training in patient-oriented care and communication with the patient. Students felt that several topics were inadequately covered in the curriculum. Overall, the students did not feel confident in providing palliative care (59.6%), especially in dealing with the spiritual aspect of palliative care (77%). The knowledge test shows that only 48% of the students answered more than half of the questions correctly.ConclusionThe students in this study are nearly junior doctors who will soon have to care for palliative patients. Although they think that palliative care is important, in their opinion the curriculum did not cover many important aspects, a perception that is also in line with their lack of confidence and knowledge in this domain. Therefore, it is important to improve palliative care education in the medical curriculum.

Advances in the Understanding of Demoralization in Oncology and Palliative Care

Over the last decade, psychosocially-oriented assessment methods, rather than nosological psychiatric systems, have been used in oncology and palliative care to detect clinically relevant dimensions with prognostic and therapeutic implications. Demoralization has emerged as one of the most important constructs, a clinical syndrome distinct from other psychiatric disorders (e.g., major depression, dysthymia, adjustment disorders, post-traumatic stress disorder [PTSD]). A number of recent studies have shown that demoralization in cancer patients is related to confrontation with existential stressors that impair the sense of mastery and competence of the individual throughout the illness and across all disease stages. Clinically, demoralization is characterized by feelings of subjective incompetence in dealing with stress, a sense of failure to meet the expectations of others, a sense of being trapped, accompanied with feelings of impotence, isolation, and despair, hopelessness or loss of meaning and purpose in life. Demoralization has a remarkable role in negatively influencing a patients’ quality of life, coping styles, and dignity and in increasing the risk for suicidal ideation. This article presents and discusses the most recent emerging issues related to demoralization in oncology and palliative care in terms of prevalence, diagnostic boundaries, and consequences to clinical practice. Important tools for the assessment of demoralization are also summarized and implications for future research are discussed.

A scoping review of palliative care for children in low- and middle-income countries

BackgroundNinety-eight percent of children needing palliative care live in low- and middle-income countries (LMICs), and almost half of them live in Africa. In contrast to the abundance of data on populations in high income countries, the current data on populations in LMICs is woefully inadequate. This study aims to identify and summarize the published literature on the need, accessibility, quality, and models for palliative care for children in LMICs.MethodsA scoping review was performed following the method of Arksey and O’Malley. Systematic searches were conducted on PubMed and Google Scholar using the main keywords, ‘children AND palliative care OR terminal care OR hospice OR end of life AND developing countries OR LMICs.’ Additional publications were obtained by handsearching. Papers were only included if they reported on the need, accessibility, quality, and models for palliative care for children in LMICs.ResultsFifteen papers met the inclusion criteria for review. Of these, 10 assessed need, seven examined availability and/or accessibility, one assessed quality, and one examined the models. We found an urgent need for palliative care, particularly in the training for health workers and improving poor availability and/or accessibility to palliative care in terms of factors such as medication and bereavement support. The best practice models demonstrated feasibility and sustainability through cooperation with governments and community organizations. The quality of pain management and emotional support was lower in LMICs compared to HICs.ConclusionAlthough we found limited evidence in this review, we identified common challenges such as the need for further training for health workers and greater availability of opioid analgesics. While efforts to change the current systems and laws applying to children in LMICs are important, we should also tackle underlying factors including the need to raise awareness about palliative care in public health and improve the accuracy of data collection.

Palliative treatment of patients with inoperable locally advanced, recurrent or metastatic head and neck squamous cell cancer, using a low-dose and personalized chemotherapeutic regimen.

Inoperable or metastatic head and neck squamous cell cancer (HNSCC) is known to be associated with a poor patient prognosis. First line therapies include a Taxol, platinum-based antineoplastic and fluorouracil (FU) treatment regimen (TPF) or a platinum-based antineoplastic, FU and EGFR inhibitor treatment regimen (PFE). The toxicity of these regimens is one of the major limiting factors, particularly for palliative treatment. The present study is a retrospective study of 15 patients with HNSCC, where the treatment goal was palliative. Of the 15 patients, 8 received a TPF, while 7 received a PFE. A total of 129 treatment cycles were administered with a median of 9 cycles (range, 3–14). Chemotherapy began with low doses and was subsequently titrated up based on tolerance and response. Positive responses were noted with the lower doses compared with the conventional doses, and maximal doses were not required. The median dose of cisplatin, paclitaxel and 5-FU administered was 40 mg/m2, 80 mg/m2 and 360 mg/m2/day for 5 days, respectively. Cetuximab was used at a standard dose. At the initial follow-up (mean, 64 days; 3 cycles), a 100% disease control rate (DCR) and 80% overall response rate (ORR) was achieved. A positive response, 60% DCR and 60% ORR, was maintained until the late stages of the study (mean, 217 days; 9 cycles). Following termination of chemotherapy after >9 cycles, 4 patients remained disease free for ~1 year. A total of 3 patients exhibited a pathologic complete response despite radiologically exhibiting residual disease. The median progression-free survival time was 10.03 months and the overall survival time was 15.77 months. The only grade 3 hematologic toxicity noted was neutropenia in 3 (20%) patients. Grade 3 vomiting was noted in 1 (6.67%) patient and grade 3 stomatitis was noted in 1 (6.67%) patient. Due to low toxicity patients exhibited improved tolerance to this approach, particularly in terms of palliative care. Furthermore, these results are in contrast to the axiom that increased doses are more effective.

The perceived impact of public involvement in palliative care in a provincial palliative care network in the Netherlands: a qualitative study.

Public involvement in palliative care is challenging and difficult, because people in need of palliative care are often not capable of speaking up for themselves. Patient representatives advocate for their common interests. The aim of our study was to examine in depth the current practice of public involvement in palliative care. The study was conducted in the province of Limburg in the Netherlands, with six palliative care networks. Study participants were 16 patient representatives and 12 professionals. This study had a descriptive design using qualitative methods: 18 in-depth interviews and three focus groups were conducted. The critical incident technique was used. The data were analysed using an analytical framework based on Arnstein's involvement classification and the process of decision making. Impact categories as well as facilitators and barriers were analysed using content analysis. The perceived impact of public involvement in palliative care in terms of citizen control and partnership is greatest with regard to quality of care, information development and dissemination, and in terms of policymaking with regard to the preparation and implementation phases of decision making. The main difference in perceived impact between patient representatives and professionals relates to the tension between operational and strategic involvement. Patient representatives experienced more impact regarding short-term solutions to practical problems, while professionals perceived great benefits in long-term, strategic processes. Improving public involvement in palliative care requires positive attitudes, open communication, sufficient resources and long-term support, to build a solid basis for pursuing meaningful involvement in the entire decision-making process.

Alternative routes to oral opioid administration in palliative care: a review and clinical summary.

A major goal of palliative care is to provide comfort, and pain is one of the most common causes of treatable suffering in patients with advanced disease. Opioids are indispensable for pain management in palliative care and can usually be provided by the oral route, which is safe, effective, and of lowest cost in most cases. As patients near the end of life, however, the need for alternate routes of medication increases with up to 70% of patients requiring a nonoral route for opioid administration. In order to optimize patient care, it is imperative that clinicians understand existing available options of opioid administration and their respective advantages and disadvantages. We performed a literature review to describe the most commonly used and available routes that can substitute for oral opioid therapy and to provide a summary of factors affecting choice of opioid for use in palliative care in terms of benefits, indications, cautions, and general considerations. Clinical circumstances will largely dictate appropriateness of the route selected. When the oral route is unavailable, subcutaneous, intravenous, and enteral routes are preferred in the palliative care population. The evidence supporting sublingual, buccal, rectal, and transdermal gel routes is mixed. This review is not designed to be a critical appraisal of the quality of current evidence; rather, it is a summation of that evidence and of current clinical practices regarding alternate routes of opioid administration. In doing so, the overarching goal of this review is to support more informed clinical decision making.

Children and adolescents with cancer under palliative care: experience of family members

This study's objective was to investigate the experience of family members of children and adolescents with cancer in terms of palliative care, especially the care provided in the final stage of life. This is a descriptive and exploratory study with qualitative data analysis. A total of 14 family members participated in the study. They were the caregivers of children and adolescents with cancer who died, and were followed up by a teaching hospital in the state of São Paulo. Empirical data were organized around three themes: "The impact of the worsening of the disease on the family's dynamics", "Communicating bad news" and "The experience of the family concerning palliative care". This study is relevant to children and adolescents with cancer in the end-of life care because the complex, dynamics, and comprehensive experiences of families in the care of children and adolescents in this period can contribute to better understanding of the process of providing care in light of the fundamentals of palliative care.

Effect of Dignity Therapy on Distress and End-of-Life Experience in Terminally Ill Patients: A Randomised Controlled Trial

Background Dignity therapy is a unique, individualised, short-term psychotherapy that was developed for patients (and their families) living with life-threatening or life-limiting illness. We investigated whether dignity therapy could mitigate distress or bolster the experience in patients nearing the end of their lives. Methods Patients (aged ≥18 years) with a terminal prognosis (life expectancy ≤6 months) who were receiving palliative care in a hospital or community setting (hospice or home) in Canada, USA, and Australia were randomly assigned to dignity therapy, client-centred care, or standard palliative care in a 1:1:1 ratio. Randomisation was by use of a computer-generated table of random numbers in blocks of 30. Allocation concealment was by use of opaque sealed envelopes. The primary outcomes—reductions in various dimensions of distress before and after completion of the study—were measured with the Functional Assessment of Chronic Illness Therapy Spiritual Well-Being Scale, Patient Dignity Inventory, Hospital Anxiety and Depression Scale, items from the Structured Interview for Symptoms and Concerns, Quality of Life Scale, and modified Edmonton Symptom Assessment Scale. Secondary outcomes of self-reported end-of-life experiences were assessed in a survey that was undertaken after the completion of the study. Outcomes were assessed by research staff with whom the participant had no previous contact to avoid any possible response bias or contamination. Analyses were done on all patients with available data at baseline and at the end of the study intervention. This study is registered with ClinicalTrials.gov, number NCT00133965. Findings 165 of 441 patients were assigned to dignity therapy, 140 standard palliative care, and 136 client-centred care. 108, 111, and 107 patients, respectively, were analysed. No significant differences were noted in the distress levels before and after completion of the study in the three groups. For the secondary outcomes, patients reported that dignity therapy was significantly more likely than the other two interventions to have been helpful (χ2=35·50, df=2; p<0·0001), improve quality of life (χ2=14·52; p=0·001), increase sense of dignity (χ2=12·66; p=0·002), change how their family saw and appreciated them (χ2=33·81; p<0·0001), and be helpful to their family (χ2=33·86; p<0·0001). Dignity therapy was significantly better than client-centred care in improving spiritual wellbeing (χ2=10⋅35; p=0 ⋅ 006), and was significantly better than standard palliative care in terms of lessening sadness or depression (χ2=9⋅38; p=0⋅009); significantly more patients who had received dignity therapy reported that the study group had been satisfactory, compared with those who received standard palliative care (χ2=29⋅58; p<0·0001). Interpretation Although the ability of dignity therapy to mitigate outright distress, such as depression, desire for death or suicidality, has yet to be proven, its benefits in terms of self-reported end-of-life experiences support its clinical application for patients nearing death. Funding National Cancer Institute, National Institutes of Health. (Reprinted with permission from The Lancet Oncology 2011;12:753–762)

Reflecting on the black and minority ethnic contribution to palliative care

Reflecting on the black and minority ethnic contribution to palliative care

A poststructural glimpse at the World Health Organization's palliative care discourse in rural South Africa

The World Health Organization (WHO) defines palliative care in terms of three constructs of care, namely, physical, psychosocial and spiritual, for a person who has a life-limiting illness. Life-limiting illness from WHO's perspective signifies and qualifies a patient for palliative care. Poststructuralism offers insights into how language constructs reality and sets up the limitations and possibilities of palliative care when it is practiced in a rural and remote area of the developing world, such as in South Africa. The study employed the qualitative method of photo-elicitation, which was used as a launching point for one-on-one discussion around photographs taken by participants. The participants, four palliative care nurses and two home-based care workers who work in rural homes in KwaZulu-Natal, South Africa, were purposively selected to provide rich information based on their personal experiences. Defining palliative care in terms of a life-limiting illness may present challenges in rural areas where there is limited access to the diagnosis and prognosis of an illness. Limiting care to those with a life-limiting illness may not be culturally appropriate. Physical care did not prove to be a common care requirement and cultural care, which is not included in the WHO palliative care discourse, was common and necessary. The WHO palliative care discourse can be thought of as not presenting a neutral way of looking at care and an irresolvable dichotomy may be set up in traditional rural, isolated areas. The question emerging is whether palliative care can be offered if it is not known whether an illness is life-limiting or not? Further poststructural work, in conjunction with exploration of palliative care practice, is required in this context.

Caring for caregivers

The support of family caregivers in palliative care is critical and well recognized; yet the fact that caregivers still face significant unmet needs highlights a considerable gap in addressing this issue. Current themes on the caregiving experience in palliative care are presented. The recent literature suggests a shift towards a broader understanding of the caregiving experience in palliative care in terms of better integration of caregivers of patients with noncancer illnesses into palliative care, improved continuity of care among different settings and better integration of guidelines and evidence into practice. Several risk groups and factors of caregiving in palliative care have been identified. The literature review emphasizes a public health approach as an important step in addressing the caregivers' burden. While 'the right way' of supporting caregivers is still to be established, consideration of caregivers' roles as co-providers and co-recipients of care offers numerous implications for research and clinical practice. This review demonstrates the need for the development of specific strategies aimed at supporting informal caregivers in caring for their loved ones in different settings and periods of advanced life-threatening illnesses. Open issues in searching for 'the right way' to care for caregivers in palliative care are presented.