Showing papers in "Palliative Medicine in 2015"
TL;DR: This review adds to what has been known for over two decades in relation to patient and family priorities for end-of-life care within the hospital setting, namely, effective communication and shared decision making, expert care, respectful and compassionate care and trust and confidence in clinicians.
Abstract: Background: The majority of expected deaths occur in hospitals where optimal end-of-life care is not yet fully realised, as evidenced by recent reviews outlining experience of care. Better understanding what patients and their families consider to be the most important elements of inpatient end-of-life care is crucial to addressing this gap. Aim and design: This systematic review aimed to ascertain the five most important elements of inpatient end-of-life care as identified by patients with palliative care needs and their families. Data sources: Nine electronic databases from 1990 to 2014 were searched along with key internet search engines and handsearching of included article reference lists. Quality of included studies was appraised by two researchers. Results: Of 1859 articles, 8 met the inclusion criteria generating data from 1141 patients and 3117 families. Synthesis of the top five elements identified four common end-of-life care domains considered important to both patients and their families, namely, (1) effective communication and shared decision making, (2) expert care, (3) respectful and compassionate care and (4) trust and confidence in clinicians. The final domains differed with financial affairs being important to families, while an adequate environment for care and minimising burden both being important to patients. Conclusion: This review adds to what has been known for over two decades in relation to patient and family priorities for end-of-life care within the hospital setting. The challenge for health care services is to act on this evidence, reconfigure care systems accordingly and ensure universal access to optimal end-of-life care within hospitals.
206 citations
TL;DR: Given the increasing tendency for home deaths, greater understanding of the interplay of factors affecting family carers may help improve community services.
Abstract: Background:This study is based on people dying at home relying on the care of unpaid family carers. There is growing recognition of the central role that family carers play and the burdens that they bear, but knowledge gaps remain around how to best support them.Aim:The aim of this study is to review the literature relating to the perspectives of family carers providing support to a person dying at home.Design:A narrative literature review was chosen to provide an overview and synthesis of findings. The following search terms were used: caregiver, carer, ‘terminal care’, ‘supportive care’, ‘end of life care’, ‘palliative care’, ‘domiciliary care’ AND home AND death OR dying.Data sources:During April–May 2013, Cumulative Index to Nursing and Allied Health Literature (CINAHL), MEDLINE, PsycINFO, Pubmed, Cochrane Reviews and Citation Indexes were searched. Inclusion criteria were as follows: English language, empirical studies and literature reviews, adult carers, perspectives of family carers, articles focu...
115 citations
TL;DR: The results reveal that burnout and psychological morbidity are significant in the palliative care community and demonstrate a need to look at managing long working hours and promoting the use of coping mechanisms to reduce burnouts and Psychological morbidity.
Abstract: Background:The prevalence of burnout, psychological morbidity and the use of coping mechanisms among palliative care practitioners in Singapore have not been studied.Aim:We aimed to study the prevalence of burnout and psychological morbidity among palliative care practitioners in Singapore and its associations with demographic and workplace factors as well as the use of coping mechanisms.Design:This was a multi-centre, cross-sectional study of all the palliative care providers within the public healthcare sector in Singapore.Setting/participants:The study was conducted in hospital palliative care services, home hospice and inpatient hospices in Singapore. The participants were doctors, nurses and social workers.Results:The prevalence of burnout among respondents in our study was 91 of 273 (33.3%) and psychological morbidity was 77 (28.2%). Working >60 h per week was significantly associated with burnout (odds ratio: 9.02, 95% confidence interval: 2.3–35.8, p = 0.002) and psychological morbidity (odds rati...
106 citations
TL;DR: It is recommended that bereavement services be theoretically driven and evidence based, offer continuity of care prior to and following the death of a child, and provide a range of interventions for the “whole family” and flexibility in service delivery.
Abstract: Background:There has been a breadth of research on the grief experience of parents following the death of a child. However, the role and impact of hospital-based bereaved services remain unclear.Aim:To identify services offered to bereaved families in perinatal, neonatal, and pediatric hospital settings and summarize the psychosocial impact of these services and published recommendations for best practice hospital-based bereavement care.Design:Systematic review of qualitative, quantitative, and mixed method studies guided by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses checklist and methodological quality appraised in accordance with the Mixed Method Appraisal Tool.Data sources:MEDLINE, EMBASE, Cumulative Index to Nursing and Allied Health, and PsychINFO were searched to find studies describing hospital-based bereavement services/interventions for parents, siblings, and grandparents.Results:In all, 14 qualitative, 6 quantitative, and 10 mixed method studies were identified. Nine ...
105 citations
TL;DR: Despite a perceived need for pediatric advance care planning, several barriers to its implementation were identified and future research should focus on developing and testing strategies for overcoming the existing barriers.
Abstract: Background: Pediatric advance care planning differs from the adult setting in several aspects, including patients' diagnoses, minor age, and questionable capacity to consent. So far, research has largely neglected the professionals' perspective. Aim: We aimed to investigate the attitudes and needs of health care professionals with regard to pediatric advance care planning. Design: This is a qualitative interview study with experts in pediatric end-of-life care. A qualitative content analysis was performed. Setting/participants: We conducted 17 semi-structured interviews with health care professionals caring for severely ill children/ adolescents, from different professions, care settings, and institutions. Results: Perceived problems with pediatric advance care planning relate to professionals' discomfort and uncertainty regarding end- of-life decisions and advance directives. Conflicts may arise between physicians and non-medical care providers because both avoid taking responsibility for treatment limitations according to a minor's advance directive. Nevertheless, pediatric advance care planning is perceived as helpful by providing an action plan for everyone and ensuring that patient/parent wishes are respected. Important requirements for pediatric advance care planning were identified as follows: repeated discussions and shared decision-making with the family, a qualified facilitator who ensures continuity throughout the whole process, multi-professional conferences, as well as professional education on advance care planning. Conclusion: Despite a perceived need for pediatric advance care planning, several barriers to its implementation were identified. The results remain to be verified in a larger cohort of health care professionals. Future research should focus on developing and testing strategies for overcoming the existing barriers.
103 citations
TL;DR: There is need for clearer articulation of the likely mechanisms by which advance care planning can lead to reduced care costs or improved cost-effectiveness, particularly for people who retain capacity.
Abstract: Background:Advance care planning is a process of discussion and review concerning future care in the event of losing capacity. Aimed at improving the appropriateness and quality of care, it is also...
102 citations
TL;DR: There is systematic variation in end-of-life care sedation practice and its conceptualization in the United Kingdom, Belgium and the Netherlands, suggesting a continuum of practice from the provision of low doses of sedatives to control terminal restlessness to rarely encountered deep sedation.
Abstract: Background: Extensive debate surrounds the practice of continuous sedation until death to control refractory symptoms in terminal cancer care. We examined reported practice of United Kingdom, Belgian and Dutch physicians and nurses. Methods: Qualitative case studies using interviews. Setting: Hospitals, the domestic home and hospices or palliative care units. Participants: In all, 57 Physicians and 73 nurses involved in the care of 84 cancer patients. Results: UK respondents reported a continuum of practice from the provision of low doses of sedatives to control terminal restlessness to rarely encountered deep sedation. In contrast, Belgian respondents predominantly described the use of deep sedation, emphasizing the importance of responding to the patient's request. Dutch respondents emphasized making an official medical decision informed by the patient's wish and establishing that a refractory symptom was present. Respondents employed rationales that showed different stances towards four key issues: the preservation of consciousness, concerns about the potential hastening of death, whether they perceived continuous sedation until death as an 'alternative' to euthanasia and whether they sought to follow guidelines or frameworks for practice. Conclusion: This qualitative analysis suggests that there is systematic variation in end-of-life care sedation practice and its conceptualization in the United Kingdom, Belgium and the Netherlands.
99 citations
TL;DR: Clinicians vary in their views and approaches to end-of-life discussions and care, and some lack confidence and most are interested in further skills acquisition.
Abstract: Background:As heart failure often follows an unpredictable clinical trajectory, there has been an impetus to promote iterative patient-provider discussions regarding prognosis and preferences for end-of-life care.Aim:To examine clinicians’ practices, expectations, and personal level of confidence in discussing goals of care and providing end-of-life care to their patients with heart failure.Design:Multi-site clinician survey.Setting and Participants:Physicians, nurse practitioners, and physician assistants at Mayo Clinic (Rochester, Minnesota, USA) and its surrounding health system were asked to participate in an electronic survey in October 2013. Tertiary Care Cardiology, Community Cardiology, and Primary Care clinicians were surveyed.Results:A total of 95 clinicians participated (52.5% response rate). Only 12% of clinicians reported having annual end-of-life discussions as advocated by the American Heart Association. In total, 52% of clinicians hesitated to discuss end-of-life care citing provider disco...
98 citations
TL;DR: Policy makers, funders and clinicians can be confident that Palliative Care Phase is a reliable and acceptable measure that can be used for care planning, quality improvement and funding purposes.
Abstract: Background:The concept of palliative care consisting of five distinct, clinically meaningful, phases (stable, unstable, deteriorating, terminal and bereavement) was developed in Australia about 20 years ago and is used routinely for communicating clinical status, care planning, quality improvement and funding.Aim:To test the reliability and acceptability of revised definitions of Palliative Care Phase.Design:Multi-centre cross-sectional study involving pairs of clinicians independently rating patients according to revised definitions of Palliative Care Phase.Setting/participants:Clinicians from 10 Australian palliative care services, including 9 inpatient units and 1 mixed inpatient/community-based service.Results:A total of 102 nursing and medical clinicians participated, undertaking 595 paired assessments of 410 patients, of which 90.7% occurred within 2 h. Clinicians rated 54.8% of patients in the stable phase, 15.8% in the unstable phase, 20.8% in the deteriorating phase and 8.7% in the terminal phase...
95 citations
TL;DR: Four themes representing patient preferences for care may be useful for guiding clinical practice and measurements of quality, with the overall goal of meeting future needs and improving quality in palliative care services to suit patients’ preferences.
Abstract: Background:It is necessary to develop palliative care to meet existing and future needs of patients and their families. It is important to include knowledge of patient preferences when developing high-quality palliative care services. Previous reviews have focused on patient preferences with regard to specific components of palliative care. There is a need to review research on patient’s combined preferences for all elements that constitute palliative care.Aim:The aim of this study is to identify preferences for palliative care among patients in the palliative phase of their illness, by synthesizing existing research.Data sources:Studies were retrieved by searching databases – the Cochrane Library, Medline, CINAHL, PsycINFO, Scopus and Sociological Abstracts – from 1946 to 2014, and by hand searching references in the studies included.Design:A systematic mixed studies review was conducted. Two reviewers independently selected studies for inclusion and extracted data according to the eligibility criteria. ...
92 citations
TL;DR: A primary palliative care toolkit has been produced and refined, together with associated guidance that can help community-based palliatives care services to be established nationally.
Abstract: Background:A multidisciplinary European Association of Palliative Care Taskforce was established to scope the extent of and learn what facilitates and hinders the development of palliative care in the community across Europe.Aim:To document the barriers and facilitators for palliative care in the community and to produce a resource toolkit that palliative care specialists, primary care health professionals or policymakers, service developers, educationalists and national groups more generally could use to facilitate the development of palliative care in their own country.Design:(1) A survey instrument was sent to general practitioners with knowledge of palliative care services in the community in a diverse sample of European countries. We also conducted an international systematic review of tools used to identify people for palliative care in the community. (2) A draft toolkit was then constructed suggesting how individual countries might best address these issues, and an online survey was then set up for...
TL;DR: This review is an important preliminary step in improving the assessment of bereavement risk and, consequently, better bereavement outcomes for palliative care family caregivers.
Abstract: Background:Palliative care standards and policies recommend that bereavement support be provided to family caregivers, yet uncertainty surrounds whether support currently offered by palliative care...
TL;DR: The Carer Support Needs Assessment Tool presented a simple, yet potentially effective intervention to help palliative care providers systematically assess and address family caregivers’ needs.
Abstract: Introduction:The Carer Support Needs Assessment Tool encompasses the physical, psychological, social, practical, financial, and spiritual support needs that government policies in many countries emphasize should be assessed and addressed for family caregivers during end-of-life care.Aim:To describe the experience of family caregivers of terminally ill people of the Carer Support Needs Assessment Tool intervention in home-based palliative care.Methods:This study was conducted during 2012–2014 in Silver Chain Hospice Care Service in Western Australia. This article reports on one part of a three-part evaluation of a stepped wedge cluster trial. All 233 family caregivers receiving the Carer Support Needs Assessment Tool intervention provided feedback on their experiences via brief end-of-trial semi-structured telephone interviews. Data were subjected to a thematic analysis.Results:The overwhelming majority reported finding the Carer Support Needs Assessment Tool assessment process straightforward and easy. Fo...
TL;DR: A model of coping was developed, integrating resilience, burden, needs, needs and rewards, which could enable clinicians to better understand the caregiver experience, help family caregivers foster resilience and identify rewards, and develop appropriate individualised caregiver support plans.
Abstract: Background:Family caregivers of people with Motor Neurone Disease/Amyotrophic Lateral Sclerosis, an incurable, mostly rapidly fatal neurodegenerative disease, face many challenges. Although there is considerable research on caregiver burden in Motor Neurone Disease/Amyotrophic Lateral Sclerosis, there is less knowledge of the positive aspects of caring.Objective:To explore the experiences of family caregivers of people with Motor Neurone Disease/Amyotrophic Lateral Sclerosis, specifically the relationship between positive and negative experiences of caring, and to identify possible ways to better support these caregivers.Methods:Secondary thematic analysis of 24 semi-structured qualitative interviews conducted longitudinally with 10 family caregivers. Interviews explored rewarding and unrewarding aspects of caring.Results:Themes emerged around burden, needs, rewards and resilience. Resilience included getting active, retaining perspective and living for the moment. Burden was multifaceted, including socia...
TL;DR: Education, training and experience played a role in the nurses’ confidence and should continue to be central to efforts to improving the quality of palliative care in the community and nursing homes.
Abstract: Background: In the United Kingdom, an approach to improving end-of-life care has been the introduction of 'just in case' or 'anticipatory' medications. Nurses are often responsible for deciding when to use anticipatory medications, but little is known about their experiences. Aim: To examine nurses' decisions, aims and concerns when using anticipatory medications. Design: An ethnographic study in two UK regions, using observations and interviews with nurses working in community and nursing home teams (n = 8). Findings: Observations (n = 83) and interviews (n = 61) with community nurses. Nurses identified four 'conditions' that needed to be established before they implemented anticipatory medications: (1) irreversibility; (2) inability to take oral medication; (3) where the patient was able, they should consent and (4) decision had to be independent of demands or requests from patient's relatives. By using anticipation medications, nurses sought to enable patients to be 'comfortable and settled' by provision of gradual relief of symptoms at the lowest dose possible. They aimed to respond quickly to needs, seeking to avoid hospital admission or medical call-out, while adhering to local prescribing policies. Worries included distinguishing between pain and agitation, balancing risks of under- and over- medication and the possibility of hastening death. Conclusion: Nurses take a leading role in the administration of anticipatory medications. Nurses apply consideration and caution to the administration of anticipatory medications but some experience emotional burden. Education, training and experience played a role in the nurses' confidence and should continue to be central to efforts to improving the quality of palliative care in the community and nursing homes.
TL;DR: Existential psychology provides a theoretical perspective from which to understand the psychological complexity of the emotional challenges home caregivers face and a framework which may usefully inform research and clinical practice.
Abstract: Background:Relatives looking after a terminally ill family member at home face numerous challenges. Studies into relatives’ experiences of home caregiving have been criticised for their descriptive nature and lack of theoretical underpinnings.Aim:To explore the emotional challenges faced by home caregivers, and their experiences of healthcare professionals, from the perspective of existential psychology.Design:A qualitative study using semi-structured interviews. Transcripts were analysed thematically using the Framework approach.Setting/participants:The study took place within an inner-city London hospice. Participants (n = 15) were recently bereaved adult relatives of cancer patients who cared for their family member at home.Results:Participants’ experiences of being a caregiver and of professional support were highly varied. The analysis generated 15 themes which were organised into a framework based on Yalom’s four ‘existential conditions’: responsibility (e.g. ‘being the linchpin of care’; ‘you only ...
TL;DR: Acute hospital staff require adequate training, including symptom control, and the correct environment in which to deliver dignified and person-centred end-of-life care, as well as approaches and models in care provision and healthcare settings and design.
Abstract: Background:A core concept behind patient-centred approaches is the need to treat people with, and preserve, dignity in care settings. People receiving palliative care are one group who may have particularly sensitive needs in terms of their condition, symptoms and life expectancy. Dignity is more likely to be violated in hospital settings. Given the high percentage of people with palliative care needs who are admitted to hospital during their last year of life, the provision of dignity enhancing and preserving care in that setting is of vital importance.Aim:To examine international evidence relating to dignity and person-centred care for people with palliative care needs in the acute hospital setting.Design:A systematic literature review was conducted, incorporating data extraction, analysis and quality appraisal of included papers.Data sources:MEDLINE, CINAHL, PsycINFO, ASSIA, EMBASE, Cochrane Database and Web of Science. Inclusion dates: 1 January 2000–1 April 2014. Eligibility criteria: Adult palliativ...
TL;DR: Home is a dynamic concept for people nearing the end of life and is concerned with expression of social and cultural identity including symbolic and affective connections, as opposed to being merely a physical dwelling place or street address.
Abstract: Background:While ‘home’ is cited most frequently as being the preferred place of death, most people will die in institutions. Yet, the meaning and significance of home for people nearing the end of life has not been fully explored.Aim:The aim of this article is to critically examine the meaning of home for dying patients and their families.Design:The qualitative study used video-reflexive ethnography methods. Data were collected and analysed over an 18-month period.Setting/participants:Participants were recruited from two Australian sites: a palliative care day hospital and an acute hospital. Participants included patients with a prognosis of 6 months or less (n = 29), their nominated family member(s) (n = 5) and clinicians (n = 36) caring for them. Patients and families were ‘followed’ through care settings including the palliative care unit and into their own homes.Results:Whether or not participants deemed space(s) safe or unsafe was closely related to the notion of home. Six themes emerged concerning ...
TL;DR: Differences in willingness to pay of patients and caregivers suggest the need for eliciting patient preferences during treatment decision making as opposed to relying on caregiver input.
Abstract: Background:Patients with advanced cancer often have to make difficult decisions, such as how much to spend on moderately life-extending treatments. This and other end-of-life decisions are also influenced by their informal caregivers. Understanding the relative value that patients and their caregivers place on various aspects of end-of-life care can help clinicians tailor treatments to best meet the preferences of their patients.Aim:To quantify willingness to pay of patients with advanced cancer and their caregivers to extend the patients’ life by 1 year and to compare this result to their willingness to pay for other end-of-life improvements.Design:Cross-sectional survey using a discrete choice experiment.Participants:A total of 211 patients with stage IV cancer and their informal caregivers.Results:The willingness to pay of patients to extend their life by 1 year (S$18,570; 95% confidence interval: S$6687–S$30,542) was not statistically different from their willingness to pay to avoid severe pain (S$22,...
TL;DR: The cost to society of providing care to people at the end of their lives is significant and demand for care will increase as the demographic profile of the population ages.
Abstract: Background:People with advanced cancer require a range of health, social and informal care during the final phases of life. The cost of providing care to this group as they approach the end of their lives is unknown, but represents a significant cost to health and social care systems, charities patients and their families.Aim:In this study, we estimate the direct and indirect costs for lung, breast, colorectal and prostate cancer patients at the end of life (from the start of strong opioids to death) in England and Wales.Methods:We use a modelling-based approach to estimate the costs of care. Data are estimated from the literature and publicly available data sets. Probabilistic sensitivity analysis is used to reflect uncertainty in model estimates.Results:Total estimated costs for treating people with these four cancers at the end of life are £641 million. Breast and prostate cancer patients have the highest expected cost per person at £12,663 (95% credible interval (CI): £1249–£38,712) and £14,859 (95% C...
TL;DR: The qualitative analysis showed that the training seemed to instigate a process of change in participants, and a randomized controlled trial is needed to examine the effectiveness of Mindfulness-Based Stress Reduction in reducing psychological distress in lung cancer patients and partners.
Abstract: • The effectiveness of Mindfulness-Based Stress Reduction (MBSR) in reducing psychological distress in cancer patients has mainly been studied in females who were diagnosed with breast cancer in the curative stage of the disease. • • It is unknown whether MBSR would also be feasible and effective for lung cancer patients. What this paper adds? • • This study demonstrates that MBSR is a feasible intervention for patients with lung cancer and their partners. • • MBSR seems to instigate a process of change in lung cancer patients and their partners, in which they become more aware of and gain more insight into their thoughts, feelings and bodily sensations. Abstract Background: Lung cancer patients and partners show high rates of impaired quality of life and heightened distress levels. Mindfulness- Based Stress Reduction has proven to be effective in reducing psychological distress in cancer patients. However, studies barely included lung cancer patients. Aim: We examined whether Mindfulness-Based Stress Reduction might be a feasible and effective intervention for patients with lung cancer and partners. Design: Mindfulness-Based Stress Reduction is a training in which mindfulness practices are combined with psycho-education to help participants cope with distress. In this mixed methods pilot study, questionnaires on psychological distress and quality of life were administered before, directly after and 3 months after the Mindfulness-Based Stress Reduction training, in combination with semi- structured interviews. Setting/participants: Patients with lung cancer and partners were recruited at one tertiary care academic medical centre. A total of 19 lung cancer patients and 16 partners participated in the Mindfulness-Based Stress Reduction training. Results: Most patients were diagnosed with advanced stage lung cancer. Vast majority completed the training. Those receiving anti- cancer treatment did not miss more sessions than patients who were not currently treated. Patients and partners felt positive about participating in a peer group and with their partner. Among participants no significant changes were found in psychological distress. Caregiver burden in partners decreased significantly after following Mindfulness-Based Stress Reduction. The qualitative analysis showed that the training seemed to instigate a process of change in participants. Conclusion: The Mindfulness-Based Stress Reduction training seemed to be feasible for patients with lung cancer and their partners. A randomized controlled trial is needed to examine the effectiveness of Mindfulness-Based Stress Reduction in reducing psychological distress in lung cancer patients and partners.
TL;DR: Very little evidence of sufficient quality is available to confirm the effects of intervention measures on bereaved parents and siblings following a child’s death, and well-designed randomized controlled trials are needed to improve the understanding of the efficacy and implementation of interventions targeting bereavedParents and siblings.
Abstract: Background:A child’s death is one of the most stressful events that parents and siblings may experience. Interventions for bereaved families following a child’s death have been examined over the la...
TL;DR: There is incongruity between family values and preferences for end-of-life care and actual care received for very elderly patients who are admitted to the intensive care unit, and defects in communication and decision-making may be associated with prolonged use of life-sustaining treatments in very elderly critically ill patients.
Abstract: Background:Little is known about the perspectives and experiences of family members of very elderly patients who are admitted to the intensive care unit.Aim:To describe family members’ perspectives about care provided to very elderly critically ill patients.Design:Multicenter, prospective, cohort study.Participants and setting:In total, 535 family members of patients aged 80 years or older admitted to 22 intensive care units for more than 24 h.Results:Family members reported that the “patient be comfortable and suffer as little as possible” was their most important value and “the belief that life should be preserved at all costs” was their least important value considered in making treatment decisions. Most family members (57.9%) preferred that life support be used for their family member, whereas 24.1% preferred comfort measures only, and 14.4% were unsure of their treatment preferences. Only 57.3% reported that a doctor had talked to them about treatment options for the patient. Overall, 29.7% of patien...
TL;DR: Costs of caregiving were significant and, for participants, resulted in debt or even bankruptcy, and research is now needed to quantify the financial contribution of family and whānau caregiving within a palliative care context.
Abstract: Background:There has been significant attention paid in recent years to the economic costs of health service provision for people with palliative care needs. However, little is known about the cost...
TL;DR: Renal patients have considerable unmet Advance Care Planning needs and there is a need to normalise discussions about preferences and priorities in renal and haemodialysis units earlier in the disease trajectory.
Abstract: Background: There is a need to improve end-of-life care for people with end-stage kidney disease, particularly due to the increasingly elderly, frail and co-morbid end-stage kidney disease population. Timely, sensitive and individualised Advance Care Planning discussions are acceptable and beneficial for people with end-stage kidney disease and can help foster realistic hopes and goals. Aim: To explore the experiences of people with end-stage kidney disease regarding starting haemodialysis, its impact on quality of life and their preferences for future care and to explore the Advance Care Planning needs of this population and the timing of this support. Study design: Semi-structured qualitative interview study of people receiving haemodialysis. Interviews were analysed using thematic analysis. Recruitment ceased once data saturation was achieved. Setting/participants: A total of 20 patients at two UK National Health Service hospitals, purposively sampled by age, time on haemodialysis and symptom burden. Results: Themes emerged around: Looking Back, emotions of commencing haemodialysis; Current Experiences, illness and treatment burdens; and Looking Ahead, facing the realities. Challenges throughout the trajectory included getting information, communicating with staff and the 'conveyor belt' culture of haemodialysis units. Participants reported a lack of opportunity to discuss their future, particularly if their health deteriorated, and variable involvement in treatment decisions. However, discussion of these sensitive issues was more acceptable to some than others. Conclusion: Renal patients have considerable unmet Advance Care Planning needs. There is a need to normalise discussions about preferences and priorities in renal and haemodialysis units earlier in the disease trajectory. However, an individualised approach is essential - one size does not fit all.
TL;DR: Community-based palliative care of people who die with or of dementia is relatively infrequent but associated with significant reductions in hospital emergency department use in the last year of life.
Abstract: Objective:To describe patterns in the use of hospital emergency departments in the last year of life by people who died with dementia and whether this was modified by use of community-based palliative care.Design:Retrospective population-based cohort study of people in their last year of life. Time-to-event analyses were performed using cumulative hazard functions and flexible parametric proportional hazards regression models.Setting/participants:All people living in Western Australia who died with dementia in the 2-year period 1 January 2009 to 31 December 2010 (dementia cohort; N = 5261). A comparative cohort of decedents without dementia who died from other conditions amenable to palliative care (N = 2685).Results:More than 70% of both the dementia and comparative cohorts attended hospital emergency departments in the last year of life. Only 6% of the dementia cohort used community-based palliative care compared to 26% of the comparative cohort. Decedents with dementia who were not receiving community-...
TL;DR: In lung transplant candidates, palliative care and opioids in particular can be safely provided without compromising eligibility for transplantation.
Abstract: Background:Lung transplant candidates experience important symptoms, but they are rarely referred for palliative care consultation until they are deemed ineligible for transplant. Our lung transplant service has a high rate of palliative care referral for patients awaiting transplant.Aim:We reviewed the characteristics, interventions, and outcomes of lung transplant candidates referred for co-management by palliative care, to determine whether they safely received opioids and went on to transplantation.Design and participants:Retrospective review of lung transplant candidates referred to our palliative care consultation service between January 2010 and May 2012.Results:Of 308 lung transplant candidates, 64 (20.7%) were referred to palliative care. Most had interstitial lung disease and were referred for dyspnea and a rapidly deteriorating course. A total of 59 (92%) were prescribed opioids for dyspnea, 55/59 used the opioids more than once, and 38/59 were maintained on standing opioids. There were no epis...
TL;DR: Communication should be improved within the intensive care unit caregiver team to strengthen the involvement of nurses in end-of-life care and lessen relatives’ long-term anxiety.
Abstract: Background:Communication is a hallmark of end-of-life care in the intensive care unit. It may influence the impact of end-of-life care on patients’ relatives. We aimed to assess end-of-life care an...
TL;DR: Findings indicated that clinicians’ perceptions of families’ wellbeing, circumstances, characteristics, engagement with clinicians and anticipated reaction to invitation influenced invitation.
Abstract: Background: Recruitment to paediatric palliative care research is challenging, with high rates of non-invitation of eligible families by clinicians. The impact on sample characteristics is unknown. Aim: To investigate, using mixed methods, non-invitation of eligible families and ensuing selection bias in an interview study about parents' experiences of advance care planning (ACP). Design: We examined differences between eligible families invited and not invited to participate by clinicians using (1) field notes of discussions with clinicians during the invitation phase and (2) anonymised information from the service's clinical database. Setting: Families were eligible for the ACP study if their child was receiving care from a UK-based tertiary palliative care service (Group A; N = 519) or had died 6-10 months previously having received care from the service (Group B; N = 73). Results: Rates of non-invitation to the ACP study were high. A total of 28 (5.4%) Group A families and 21 (28.8%) Group B families (p < 0.0005) were invited. Family-clinician relationship appeared to be a key factor associated qualitatively with invitation in both groups. In Group A, out-of-hours contact with family was statistically associated with invitation (adjusted odds ratio 5.46 (95% confidence interval 2.13-14.00); p < 0.0005). Qualitative findings also indicated that clinicians' perceptions of families' wellbeing, circumstances, characteristics, engagement with clinicians and anticipated reaction to invitation influenced invitation. Conclusion: We found evidence of selective invitation practices that could bias research findings. Non-invitation and selection bias should be considered, assessed and reported in palliative care studies.
TL;DR: Pain was highly prevalent in all diagnostic groups, with cancer patients experiencing more severe pain on admission, and chronic obstructive pulmonary disease patients the least likely to achieve pain control.
Abstract: Background:Limited data exist concerning the unique pain characteristics of patients with non-cancer terminal diseases referred for inpatient hospice care.Aims:To define the unique pain characteristics of patients admitted to an acute inpatient hospice setting with end-stage dementia or chronic obstructive lung disease (or chronic obstructive pulmonary disease) and to compare them to patients with end-stage cancer.Design:Retrospective patient chart review. Demographic, physiological, pain parameters, and medication utilization data were extracted. Associations between pain characteristics, medication utilization, and admission diagnoses were assessed. Analyses included descriptive statistics.Setting/participants:In total, 146 patients admitted to an acute inpatient hospice between 1 April 2011 and 31 March 2012 with an underlying primary diagnosis of chronic obstructive pulmonary disease (n = 51), dementia (n = 48), or cancer (n = 47).Results:Pain was highly prevalent in all diagnostic groups, with cancer...