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Background: French laws governing end-of-life medical practices forbid euthanasia and affirm patients' right to deep and continuous sedation until death. Cultural traditions and disparities in health care provision, as in overseas France, could limit the enforcement of such laws and modify end-of-life medical practices., Aim: This research aims to describe end-of-life medical decisions in overseas France and to compare with those described in mainland France., Methods: A retrospective study of a random sample of adult patients who died between March 2020 and February 2021 was conducted in four overseas French departments. Physicians who certified the deaths were asked to describe end-of-life care and medical decisions in a questionnaire., Results: A total of 1815 deaths were analysed over 8730 questionnaires sent. Withholding treatments was the most frequent decision (41%), treatment for pain or symptoms was intensified for a third of patients, Deep and continuous sedation until death was implemented in 13.3% cases. The use of drugs to deliberately end life was mentioned in 1.3% deaths. At least one decision was made in 61.6% deaths. More decisions that may hasten death were made before predictable deaths. Intensification of pain and symptoms treatment was more frequent in 2022 than in 2010. Deep and continuous sedation was introduced by law in 2016 without prejudice to other decisions., Conclusion: Physicians in overseas France have implemented recent changes in end-of-life laws, including deep and continuous sedation. Comparisons with 2010 mainland France survey show a better implementation of palliative medicine in 2022, with higher proportions of treatment withholding., (© 2024. The Author(s).)

Background: Lung transplantation is a lifesaving intervention for people with advanced lung disease, but it is costly and resource-intensive. To investigate the cost-effectiveness of lung transplantation as a treatment option in pulmonary disease, we must understand costs attributable to end-of-life hospitalizations for end-stage lung disease., Research Question: What are the costs associated with end-of-life hospitalizations for people with pulmonary disease, and how have these trends changed over time?, Study Design and Methods: Adults aged 18 to 74 years with hospitalization data in the Cost and Utilization Project National Inpatient Sample data from 2009 to 2019 with a pulmonary disease admission were included in this analysis. Those with a history of lung transplantation were excluded. International Classification of Diseases codes were used to identify pulmonary disease admissions, complications, and procedures and interventions. Total charges were calculated for hospitalizations and stratified by patient status at time of discharge. Trends in charges over time were assessed by demographic and hospital factors., Results: One hundred nine thousand nine hundred twenty-four (4.1%) hospital admissions for pulmonary disease resulted in in-hospital mortality. Those with obstructive lung disease accounted for 94.1% of hospitalizations and 88.1% cases of in-hospital mortality. Estimated costs for end-of-life hospitalizations were $29,981 on average with wide variation in cost by diagnosis and procedure utilization. Inpatient costs were highest for younger people who received more procedures. Among the most expensive admissions, mechanical ventilation accounted for the greatest proportion of interventions. Significant increases in the use of mechanical ventilation, extracorporeal membrane oxygenation, and dialysis occurred over the time period. The rate of hospital transfers increased with a proportionately greater increase across admissions resulting in in-hospital mortality., Interpretation: Costs accrued during end-of-life hospitalizations vary across people but represent a significant health care cost that can be averted for selected people who undergo lung transplantation. These costs should be considered in studies of cost-effectiveness in lung transplantation., Competing Interests: Financial/Nonfinancial Disclosures None declared., (Published by Elsevier Inc.)

Background: This study aimed to investigate the trends of aggressive care at the end-of-life (EoL) for patients with advanced cancer in Korea and to identify factors affecting such care analyzing nationwide data between 2012 to 2018., Methods: This was a population-based, retrospective nationwide study. We used administrative data from the National Health Insurance Service and the Korea Central Cancer Registry to analyze 125,350 patients aged 20 years and above who died within one year of a stage IV cancer diagnosis between 2012 and 2018., Results: The overall aggressiveness of EoL care decreased between 2012 and 2018. In patients' last month of life, chemotherapy use (37.1% to 32.3%; p < 0.05), cardiopulmonary resuscitation (13.2% to 10.4%; p < 0.05), and intensive care unit admission (15.2% to 11.1%; p < 0.05) decreased during the study period, although no significant trend was noted in the number of emergency room visits. A steep increase was seen in inpatient hospice use in the last month of life (8.6% to 26.6%; p < 0.05), while downward trends were observed for hospice admission within three days prior to death (13.9% to 11%; p < 0.05). Patients were more likely to receive aggressive EoL care if they were younger, women, had treatment in tertiary hospitals, or had hematologic malignancies. In the subgroup analysis, the overall trend of aggressive EoL care decreased for all five major cancer types., Conclusion: The aggressiveness of EoL care in stage IV cancer patients showed an overall decrease during 2012-2018 in Korea., (© 2024. The Author(s).)

Background: There is an increasing need for end-of-life care due to society's progressive aging. This study aimed to describe how hospitalizations evolve long-term and in the last months life of a cohort of deceased patients., Methods: The study population were those who died in one year who lived in a district in southern Spain. The number of hospital stays over the previous 20 years and number of contacts with the emergency department, hospitalization, outpatient clinics, and medical day hospital in the last three months of life were determined. The analyses were stratified by age, sex, and pattern of functional decline., Results: The study population included 1773 patients (82.5% of all who died in the district). The hospital stays during the last 20 years of life were concentrated in the last five years (66%) and specially in the last six months (32%). Eighty percent had contact with the hospital during their last three months of life. The older group had the minimun of stays over the last 20 years and contacts with the hospital in the last months of life., Conclusions: The majority of hospitalizations occur at the end of life and these admissions represent a significant part of an acute-care hospital's activity. The progressive prolongation of life does not have to go necessarily along with a proportional increase in hospital stays., (Copyright © 2024 SEGG. Publicado por Elsevier España, S.L.U. All rights reserved.)

Introduction: Measuring changes in the appropriateness of end-of-life care provided to patients with advanced illness such as cancer, COPD or dementia can help governments and practitioners improve service delivery and quality of life. However, an assessment of a possible shift in appropriateness of end-of-life care across the population is lacking., Aim: Measuring quality indicators with routinely collected population-level data, this study aims to evaluate the appropriateness of end-of-life care for people with cancer, COPD or dementia in Belgium., Design: A population-level decedent cohort study, using data from eight population-level databases, including death certificate and health claims data. We measured validated sets of quality indicators for appropriateness of end-of-life care., Setting/participants: All people who died from cancer or COPD or with dementia between 1st January 2010 and 1st January 2016 in Belgium., Results: We identified three main trends over time across the three disease groups of increasing use of: family physicians in the last 30 days of life (+21.7% in cancer, +33.7% in COPD and +89.4% in dementia); specialist palliative care in the last 14 days of life (+4.6% in cancer, +36.9% in COPD, +17.8% in dementia); and emergency department in the last 30 days of life (+7.0% in cancer, +4.4% in COPD and +8.2% in dementia)., Conclusions: Although we found an increase of both specialized palliative care and generalist palliative care use, we also found an increase in potentially inappropriate care, including ED and ICU admissions. To increase the quality of end-of-life care, both timely initiating (generalist and specialist) palliative care and avoiding potentially inappropriate care transitions, treatments and medications need to be quality performance targets., Competing Interests: The authors have declared that no competing interests exist., (Copyright: © 2023 De Schreye et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.)

Objectives Stroke and post-stroke complications are associated with high morbidity, mortality, and cost. Our objective was to examine healthcare utilization and hospice enrollment for stroke patients at the end of life. Materials and methods The 2014 Nationwide Readmissions Database is a national database of > 14 million admissions. We used validated ICD-9 codes to identify fatal ischemic stroke, summarized demographics and hospitalization characteristics, and examined healthcare use within 30 days before fatal stroke admission. We used de-identified 2014 Medicare hospice data to identify stroke and non-stroke patients admitted to hospice. Results Among IS admissions in 2014 (n = 472,969), 22652 (4.8%) had in-hospital death. 28.2% with fatal IS had two or more hospitalizations in 2014. Among those with fatal IS admission, 13.0% were admitted with cerebrovascular disease within 30 days of fatal IS admission. Half of stroke patients discharged to hospice from the Medicare dataset were hospitalized with cerebrovascular disease within the thirty days prior to hospice enrollment. Within the study year, 6.9% of hospice enrollees had one or more emergency room visits, 31.7% had one or more inpatient encounters, and 5.2% had one or more nursing facility encounters (compared to 21.4%, 70.6%, and 27.2% respectively in the 30-day period prior to enrollment). Conclusions High rates of readmission prior to fatal stroke may indicate opportunity for improvement in acute stroke management, secondary prevention, and palliative care involvement as encouraged by AHA/ASA guidelines. For patients who are expected to survive 6 months or less, hospice may offer goal-concordant services for patients and caregivers who desire comfort-focused care., Competing Interests: Declarations of Competing Interest None., (Copyright © 2021 Elsevier Inc. All rights reserved.)

Purpose: Heightened regulations have decreased opioid prescribing across the United States, yet little is known about trends in opioid access among patients dying of cancer., Methods: Among 270,632 Medicare fee-for-service decedents with poor prognosis cancers, we used part D data to examine trends from 2007 to 2017 in opioid prescription fills and opioid potency (morphine milligram equivalents per day [MMED]) near the end-of-life (EOL), defined as the 30 days before death or hospice enrollment. We used administrative claims to evaluate trends in pain-related emergency department (ED) visits near EOL., Results: Between 2007 and 2017, the proportion of decedents with poor prognosis cancers receiving ≥ 1 opioid prescription near EOL declined 15.5% (relative percent difference [RPD]), from 42.0% (95% CI, 41.4 to 42.7) to 35.5% (95% CI, 34.9 to 36.0) and the proportion receiving ≥ 1 long-acting opioid prescription declined 36.5% (RPD), from 18.1% (95% CI, 17.6 to 18.6) to 11.5% (95% CI, 11.1 to 11.9). Among decedents receiving opioids near EOL, the mean daily dose fell 24.5%, from 85.6 MMED (95% CI, 82.9 to 88.3) to 64.6 (95% CI, 62.7 to 66.6) MMED. Overall, the total amount of opioids prescribed per decedent near EOL (averaged across those who did and did not receive an opioid) fell 38.0%, from 1,075 morphine milligram equivalents per decedent (95% CI, 1,042 to 1,109) to 666 morphine milligram equivalents per decedent (95% CI, 646 to 686). Simultaneously, the proportion of patients with pain-related ED visits increased 50.8% (RPD), from 13.2% (95% CI, 12.7 to 13.6) to 19.9% (95% CI, 19.4 to 20.4). Sensitivity analyses demonstrated similar declines in opioid utilization in the 60 and 90 days before death or hospice, and suggested that trends in opioid access were not confounded by secular trends in hospice utilization., Conclusion: Opioid use among patients dying of cancer has declined substantially from 2007 to 2017. Rising pain-related ED visits suggests that EOL cancer pain management may be worsening., Competing Interests: Andrea C. EnzingerConsulting or Advisory Role: Five Prime Therapeutics (I), Merck (I), Astellas Pharma (I), Lilly (I), Loxo (I), Taiho Pharmaceutical (I), Daiichi Sankyo (I), AstraZeneca (I), Zymeworks (I), Takeda (I), Zymeworks (I), Istari (I), Ono Pharmaceutical (I), Xencor (I), ALX Oncology (I), Bristol-Meyers Squibb (I) David M. CutlerExpert Testimony: MDL—Opioids, MDL—JUUL Alexi A. WrightConsulting or Advisory Role: GlaxoSmithKlineResearch Funding: NCCN/AstraZenecaNo other potential conflicts of interest were reported.

Competing Interests: Intérêts concurrents: Henry T. Stelfox déclare avoir reçu une subvention des Instituts de recherche en santé du Canada et un soutien financier pour participer à une rencontre du Forum canadien des soins intensifs. Aucun autre intérêt concurrent n’a été déclaré.

Objectives: The purpose was to analyze trends in intensity of care at End-of-life (EOL), in two cohorts of patients with lung or pancreatic cancer., Setting: We used population-based registry data on health care utilization to describe proportions and intensity of care at EOL comparing the two cohorts (deceased in the years of 2010 and 2017 respectively) in the region of Stockholm, Sweden., Primary and Secondary Outcomes: Main outcomes were intensity of care during the last 30 days of life; systemic anticancer treatment (SACT), emergency department (ED) visits, length of stay (LOS) > 14 days, intensive care (ICU), death at acute care hospital and lack of referral to specialized palliative care (SPC) at home. The secondary outcomes were outpatient visits, place of death and hospitalizations, as well as radiotherapy and major surgery. A multivariable logistic regression analysis was used for associations. A moderation variable was added to assess for the effect of SPC at home between the cohorts., Results: Intensity of care at EOL increased over time between the cohorts, especially use of SACT, increased with 10%, p<0.001, (n = 102/754 = 14% to n = 236/972 = 24%), ED visits with 7%, p<0.001, (n = 25/754 = 3% to n = 100/972 = 10%) and ICU care, 2%, p = 0.04, (n = 12/754 = 2% to n = 38/972 = 4%). High intensity of care at EOL were more likely among patients with lung cancer. The difference in use of SACT between the years, was moderated by SPC, with an increase of SACT, unstandardized coefficient β; 0.87, SE = 0.27, p = 0.001, as well as the difference between the years in death at acute care hospitals, that decreased (β = 0.69, SE = 0.26, p = 0.007)., Conclusion: These findings underscore an increase of several aspects regarding intensity of care at EOL, and a need for further exploration of the optimal organization of EOL care. Our results indicate fragmentation of care and a need to better organize and coordinate care for vulnerable patients., Competing Interests: The authors have declared that no competing interests exist.

Objectives: A collaborative study was undertaken by palliative care and public health on behalf of Chorley & South Ribble and Greater Preston Clinical Commissioning Groups. Going beyond a traditional needs assessment by providing projections of local palliative and end-of-life care needs in all conditions over 20 years, the study will support locality commissioning and development of appropriate health care services., Study Design: Population-based needs assessment involving secondary analysis of routinely available regional mortality and population data for Central Lancashire (2017). Palliative care need was estimated using three different recognised methods., Methods: These estimates were combined with routinely available population and mortality projections and observed trends in palliative care need to provide projections up to 2040., Results: Palliative care need in 2017 in Chorley & South Ribble and Greater Preston is estimated to be between 75% (1292) and 97% (1670), and 74.9% (1337) and 95.7% (1710) of all deaths, respectively. By 2040, the annual need is projected to increase compared with 2017 figures, by 24.2-55.9% (314-729 more deaths) in Chorley & South Ribble and by 13.4-41.4% (180-554 more deaths) in Greater Preston. The numbers of deaths from dementia are forecast to increase by three-fold in both localities., Conclusion: This study demonstrates practical application of public health data to support the development of locally responsive palliative care services. Dissemination of findings from this needs assessment on rising palliative care need, including numbers of deaths in different disease groups, provides direction to plan appropriate, equitable and sustainable services. Rapidly growing dementia deaths deserve particular attention in the planning of care. Collaborative work between public health and palliative care in other settings is encouraged, and will likely increase in significance as the full impact of COVID-19 is felt., (Copyright © 2021 The Royal Society for Public Health. Published by Elsevier Ltd. All rights reserved.)

Aims: To undertake an integrative literature review to identify, analyse and synthesize current literature on the Kennedy terminal ulcer (KTU) and other unavoidable skin injuries that appear at the end of life regardless of the healthcare context in which they occur., Methods: Integrative review following the Whittemore and Knafl methodology. The search was carried out in PubMed, Cumulative Index to Nursing and Allied Health Literature (CINAHL), and Scopus. It was limited to articles in English, French, Portuguese and Spanish. As there is little scientific production on the subject, no restrictions were applied regarding publication date., Results: Only 17 articles met the inclusion criteria. These articles were reviewed and analysed. Four relevant issues emerged: Skin failure, SCALE, Kennedy Terminal Ulcer, Trombley-Brennan: different names for the same problem; the defining characteristics and physiopathology of KTU; the differences between KTU and other injuries; and the care approach for KTU and other unavoidable injuries at the end of life., Conclusions: We identified gaps regarding the physiopathology of KTU since the current knowledge is based only on hypotheses. There is also a large gap in the knowledge about care approaches, perhaps because care plans are not recorded. Despite this, it is clear that the main objective in this situation at the end of life would be to prioritize patient comfort and quality of life., (Copyright © 2021 Tissue Viability Society. Published by Elsevier Ltd. All rights reserved.)

Purpose of Review: The medical field has a critical role not only in prolonging life but also in helping patients achieve a good death. Early studies assessing end-of-life quality indicators to capture if a good death occurred demonstrated low rates of hospice use and high rates of intensive healthcare utilization near death among patients with hematologic malignancies, raising concerns about the quality of death. In this review, we examine trends in end-of-life care for patients with hematologic malignancies to determine if we are close to the goal of a good death., Recent Findings: Several cohort studies show that patients with blood cancers are often inadequately prepared for the dying process due to late goals of care discussions and they experience low rates of palliative and hospice care. More recent analyses of population-based data demonstrate some improvements over time, with significantly more patients receiving palliative care, enrolling in hospice, and having the opportunity to die at home compared to a decade ago. These encouraging trends are paradoxically accompanied by concomitant increases in late hospice enrollment and intensive healthcare utilization near death. Although we are closer to the goal of a good death for patients with hematologic malignancies, there is ample room for growth. To close the gap between the current state of care and a good death, we need research that engages patients, caregivers, hematologic oncologists, and policy-makers to develop innovative interventions that improve timeliness of goals of care discussions, expand palliative care integration, and increase hospice use.

Background Patients with chronic disease prefer an adequately supported death at home, but often die in the hospital. We assessed temporal trends and sex differences in healthcare intensity and location of death among decedents with heart failure. Methods and Results This was a retrospective cohort study of adults with heart failure who died between April 1, 2004 and March 31, 2017 in Ontario, Canada. We used population-based administrative databases to assess healthcare utilization during the last 6 months of life and applied multilevel multivariable logistic regression to assess whether sex was independently associated with location of death. Among 396 024 decedents with heart failure, mean (SD) age was 81.8 (10.7) years, 51.5% were women, and 53.4% had in-hospital deaths. From 2004 to 2016, there was an increase in patients receiving mechanical ventilation (15.1%-19.6%), hemodialysis (5.2%-6.8%), and cardiac revascularization (1.7%-2.3%). Relative to men, women spent fewer days in a hospital (mean, 16.4 versus 18.3; mean difference, 1.9; 95% CI, 1.7-2.0; P <0.001) and in an intensive care unit (mean, 2.1 versus 3.0; mean difference, 0.9; 95% CI, 0.8-0.9; P <0.001); and less commonly received mechanical ventilation (15.5% versus 20.8%; P <0.001); hemodialysis (4.8% versus 7.7%; P <0.001); or cardiac catheterization (2.8% versus 4.6%; P <0.001). Female sex was independently associated with lower odds of in-hospital death (odds ratio, 0.88; 95% CI, 0.87-0.89). Mean (SD) 6-month direct healthcare cost was greater for in-hospital ($52 349 [$55 649]) than out-of-hospital ($35 998 [$31 900]) death. Conclusions Among decedents with heart failure, invasive care in the last 6 months increased in prevalence over time but was less common in women, who had lower odds of dying in a hospital.

This study identified the trends in end-of-life care and nursing through text network analysis. About 18,935 articles published until September 2019 were selected through searches on PubMed, Embase, Cochrane, Web of Science, and Cumulative Index to Nursing and Allied Health Literature. For topic modeling, Latent Dirichlet Allocation (K = 8) was applied. Most of the top ranked topic words for the degree and betweenness centralities were consistent with the top 1% through the semantic network diagram. Among the important keywords examined every five years, "care" was unrivaled. When analyzing the two- and three-word combinations, there were many themes representing places, roles, and actions. As a result of performing topic modeling, eight topics were derived as ethical issues of decision-making for treatment withdrawal, symptom management to improve the quality of life, development of end-of-life knowledge education programs, life-sustaining care plan for elderly patients, home-based hospice, communication experience, patient symptom investigation, and an analysis of considering patient preferences. This study is meaningful as it analyzed a large amount of existing literature and considered the main trends of end-of-life care and nursing research based on the core subject control and semantic structure.

Importance: End-of-life care is costly, and decedents often experience overtreatment or low-quality care. Noninvasive ventilation (NIV) may be a palliative approach to avoid invasive mechanical ventilation (IMV) among select patients who are hospitalized at the end of life., Objective: To examine the trends in NIV and IMV use among decedents with a hospitalization in the last 30 days of life., Design, Setting, and Participants: This population-based cohort study used a 20% random sample of Medicare fee-for-service beneficiaries who had an acute care hospitalization in the last 30 days of life and died between January 1, 2000, and December 31, 2017. Sociodemographic, diagnosis, and comorbidity data were obtained from Medicare claims data. Data analysis was performed from September 2019 to July 2020., Exposures: Use of NIV or IMV., Main Outcomes and Measures: Validated International Classification of Diseases, Ninth Revision, Clinical Modification or International Statistical Classification of Diseases, Tenth Revision, Clinical Modification procedure codes were reviewed to identify use of NIV, IMV, both NIV and IMV, or none. Four subcohorts of Medicare beneficiaries were identified using primary admitting diagnosis codes (chronic obstructive pulmonary disease [COPD], congested heart failure [CHF], cancer, and dementia). Measures of end-of-life care included in-hospital death (acute care setting), hospice enrollment at death, and hospice enrollment in the last 3 days of life. Random-effects logistic regression examined NIV and IMV use adjusted for sociodemographic characteristics, admitting diagnosis, and comorbidities., Results: A total of 2 470 435 Medicare beneficiaries (1 353 798 women [54.8%]; mean [SD] age, 82.2 [8.2] years) were hospitalized within 30 days of death. Compared with 2000, the adjusted odds ratio (AOR) for the increase in NIV use was 2.63 (95% CI, 2.46-2.82; % receipt: 0.8% vs 2.0%) for 2005 and 11.84 (95% CI, 11.11-12.61; % receipt: 0.8% vs 7.1%) for 2017. Compared with 2000, the AOR for the increase in IMV use was 1.04 (95% CI, 1.02-1.06; % receipt: 15.0% vs 15.2%) for 2005 and 1.63 (95% CI, 1.59-1.66; % receipt: 15.0% vs 18.2%) for 2017. In subanalyses comparing 2017 with 2000, similar trends found increased NIV among patients with CHF (% receipt: 1.4% vs 14.2%; AOR, 14.14 [95% CI, 11.77-16.98]) and COPD (% receipt: 2.7% vs 14.5%; AOR, 8.22 [95% CI, 6.42-10.52]), with reciprocal stabilization in IMV use among patients with CHF (% receipt: 11.1% vs 7.8%; AOR, 1.07 [95% CI, 0.95-1.19]) and COPD (% receipt: 17.4% vs 13.2%; AOR, 1.03 [95% CI, 0.88-1.21]). The AOR for increased NIV use was 10.82 (95% CI, 8.16-14.34; % receipt: 0.4% vs 3.5%) among decedents with cancer and 9.62 (95% CI, 7.61-12.15; % receipt: 0.6% vs 5.2%) among decedents with dementia. The AOR for increased IMV use was 1.40 (95% CI, 1.26-1.55; % receipt: 6.2% vs 7.6%) among decedents with cancer and 1.28 (95% CI, 1.17-1.41; % receipt: 5.7% vs 6.2%) among decedents with dementia. Among decedents with NIV vs IMV use, lower rates of in-hospital death (50.3% [95% CI, 49.3%-51.3%] vs 76.7% [95% CI, 75.9%-77.5%]) and hospice enrollment in the last 3 days of life (57.7% [95% CI, 56.2%-59.3%] vs 63.0% [95% CI, 60.9%-65.1%]) were observed along with higher rates of hospice enrollment (41.3% [95% CI, 40.4%-42.3%] vs 20.0% [95% CI, 19.2%-20.7%])., Conclusions and Relevance: This study found that the use of NIV rapidly increased from 2000 through 2017 among Medicare beneficiaries at the end of life, especially among persons with cancer and dementia. The findings suggest that trials to evaluate the outcomes of NIV are warranted to inform discussions about the goals of this therapy between clinicians and patients and their health care proxies.

Advance care planning (ACP) is a cornerstone of self-determination for the type of care provided at the end of life. Despite many national efforts to improve American adults' engagement in ACP, statistics indicate low engagement. Low engagement, especially among racial and ethnic minority populations, immigrants, people with lower socioeconomic status, young adults, rural residents, or non-English speakers, is common. Advance care planning engagement among Muslims living in the United States has been minimally studied. The purpose of this study was to explore Muslims' engagement in ACP. A cross-sectional descriptive design was used. Participants were recruited from Islamic organizations through convenience and snowball sampling. Engagement in ACP was measured by the Advance Care Planning Engagement Survey. A sample of 148 Muslims (18-79 years of age) participated in the study. The average engagement scores ranged from 1.97 to 2.09, with about two-thirds in the precontemplation stage. Significant differences in engagement scores were found according to health condition and end of life experiences. Results suggest a need for further collaborative efforts by health care providers, policymakers, and researchers to mitigate the disparities in ACP engagement in the American Muslim community.

Background: The Liverpool care pathway for the dying patient (LCP) is a multidisciplinary tool developed for the dying phase for use in palliative care settings. The literature reports divergent experiences with its application in a nursing home setting related to its implementation and staff competencies. The aim of this study is to understand how the LCP is being used in the context of the nursing home, including for residents with dementia, and experienced from the perspectives of those responsible for medical treatment in nursing homes., Methods: A mixed-methods approach was used, consisting of a survey followed by interviews. A link to a 9-item online survey with closed and open-ended questions was emailed to all physicians and nurse practitioners of 33 care organisations with nursing homes in three regions of the Netherlands (North, West and South). In addition, 10 respondents with particularly positive or negative experiences were selected for semi-structured interviews., Results: The survey was completed by 159 physicians and nurse practitioners. The respondents were very positive on the content and less positive on the use of the LCP, although they reported difficulties identifying the right time to start the LCP, especially in case of dementia. Also using the LCP was more complicated after the implementation of the electronic health record. The LCP was judged to be a marker of quality for the assessment of symptoms in the dying phase and communication with relatives., Conclusion: An instrument that prompts regular assessment of a dying person was perceived by those responsible for (medical) care to contribute to good care. As such, the LCP was valued, but there was a clear need to start it earlier than in the last days or hours of life, a need for a shorter version, and for integration of the LCP in the electronic health record. Regular assessments with an instrument that focusses on quality of care and good symptom control can improve palliative care for nursing home residents with and without dementia.

Method: A retrospective chart review was used to assess the feasibility of identifying these indicators in the data (160,897 patients from 464 practices across Australia). Conditional logistic regression was used to assess the independent contribution of nEOL indicators in patients aged 75-84 and ≥85 years using a case-control design matching by practice., Results: The strongest indicators for nEOL status were advanced malignancy, residential aged care, nutritional vulnerability, anaemia, cognitive impairment and heart failure. Other indicators included hospital attendance, pneumonia, decubitus ulcer, chronic obstructive pulmonary disease, antipsychotic prescription, male sex and stroke., Discussion: Consideration of routinely collected patient data may suggest nEOL status and trigger advance care planning discussions.

Palliative care emphasizes expertise in handling difficult conversations, discussing patients' wishes and supporting the caregiver(s). Here we outline the palliative approach of hoping for the best while preparing for the worst in several "what if" scenarios for people with Parkinson disease and their families during the COVID-19 pandemic., (Copyright © 2020. Published by Elsevier Ltd.)

Living in a hospice department is an intense experience for patients, caregivers, and healthcare professionals. End-of-life care aims to conduct vulnerable dying patients towards a painless and peaceful death. The importance of a strong staff-patient relationship and the perspective of pain and suffering from patients has already been studied. This study aimed to explore patients' inner needs living in hospice through a qualitative research approach. A descriptive qualitative study was conducted in the hospice department at ARNAS Civico in Palermo, Italy. From a qualitative research point of view, a significant sample of ten dying patients was interviewed. Data were collected until saturation by in-depth interview using a semi-structured interview guide, and Colaizzi's method was used. Five themes emerged: experiencing hospice, hospice staff, family role, coping with the disease, and death. Human relationships seem to represent a fundamental key in patients' end-of-life, especially in their family fondness. Predictably, terminally ill patients seem to fear pain and incoming death. Even though patients had everything they needed in the hospice, their main thoughts were always focused on human relationships. End-of-life medicine should improve the quality of time that each patient could spend with significant others to improve end-of-life care.

Background: Many people with terminal illness prefer to die in home-like settings-including care homes, hospices, or palliative care units-rather than an acute care hospital. Home-based palliative care services can increase the likelihood of death in a community setting, but the provision of these services may increase costs relative to usual care., Objective: The aim of this study was to estimate the incremental cost per community death for persons enrolled in end-of-life home care in Ontario, Canada, who died between 2011 and 2015., Methods: Using a population-based cohort of 50,068 older adults, we determined the total cost of care in the last 90 days of life, as well as the incremental cost to achieve an additional community death for persons enrolled in end-of-life home care, in comparison with propensity score-matched individuals under usual care (ie, did not receive home care services in the last 90 days of life)., Results: Recipients of end-of-life home care were nearly 3 times more likely to experience a community death than individuals not receiving home care services, and the incremental cost to achieve an additional community death through the provision of end-of-life home care was CAN$995 (95% confidence interval: -$547 to $2392)., Conclusion: Results suggest that a modest investment in end-of-life home care has the potential to improve the dying experience of community-dwelling older adults by enabling fewer deaths in acute care hospitals.

The purpose of this pilot was to identify the effects of a 4-credit interdisciplinary undergraduate course focused on communication strategies to enhance spiritual care at the end of life. The course provided students with opportunities to enhance their ability to communicate empathically with individuals facing the end of life. Evidence-based content focused on ways to live each day with hope and gratitude, strengthen relationships, create a legacy, and find meaning and purpose in life and death. Narayanasamy's (1999) Actioning Spirituality and Spiritual Care Education and Training in Nursing model guided project development. The study used a prospective, pretest/posttest design. Participants included undergraduate students (n = 34) from nursing, premedicine, athletic training, business, economics, and religious studies at a Midwest liberal arts college. Statistically significant differences were found in students' attitudes toward and knowledge of spirituality/spiritual care (P < .0001, Cohen's d = 0.59), spiritual care competence (P < .0001, Cohen's d = 0.79), and level of response empathy through role play (P < .0001, Cohen's d = 0.92). Many students referred to this course as "life changing" and "healing." As our students go out into the community, they may intimately touch the lives and hearts of future patients, family, and friends who face the end of life with their compassionate words.

Background: The 3 Wishes Project (3WP) is an end-of-life program that honors the dignity of dying patients by fostering meaningful connections among patients, families, and clinicians. Since 2013, it has become embedded in the culture of end-of-life care in over 20 ICUs across North America. The purpose of the current study is to describe the variation in implementation of 3WP across sites, in order to ascertain which factors facilitated multicenter implementation, which factors remain consistent across sites, and which may be adapted to suit local needs., Methods: Using the methodology of qualitative description, we collected interview and focus group data from 85 clinicians who participated in the successful initiation and sustainment of 3WP in 9 ICUs. We describe the transition between different models of 3WP implementation, from core clinical program to the incorporation of various research activities. We describe various sources of financial and in-kind resources accessed to support the program., Results: Beyond sharing a common goal of improving end-of-life care, sites varied considerably in organizational context, staff complement, and resources. Despite these differences, the program was successfully implemented at each site and eventually evolved from a clinical or research intervention to a general approach to end-of-life care. Key to this success was flexibility and the empowerment of frontline staff to tailor the program to address identified needs with available resources. This adaptability was fueled by cross-pollination of ideas within and outside of each site, resulting in the establishment of a network of like-minded individuals with a shared purpose., Conclusions: The successful initiation and sustainment of 3WP relied on local adaptations to suit organizational needs and resources. The semi-structured nature of the program facilitated these adaptations, encouraged creative and important ways of relating within local clinical cultures, and reinforced the main tenet of the program: meaningful human connection at the end of life. Local adaptations also encouraged a team approach to care, supplementing the typical patient-clinician dyad by explicitly empowering the healthcare team to collectively recognize and respond to the needs of dying patients, families, and each other., Trial Registration: NCT04147169 , retrospectively registered with clinicaltrials.gov on October 31, 2019.

Background: Many deaths in Norway occur in medical wards organized to provide curative treatment. Still, medical departments are obliged to meet the needs of patients at the end of life. Here, we analyse the electronic patient record regarding documentation of the transition from curative to palliative care (i.e. the 'turning point'). Considering the consequences of these decisions for patients, they have received surprisingly little attention from researchers. This study aims to investigate how the patient record denotes reasons for the shift from curative treatment to palliation and how texts involve voices of the patient and their families., Methods: The study comprised excerpts from electronic patient records retrieved from medical wards in three urban hospitals in Norway. We executed a retrospective analysis of anonymized extracts from 16 electronic patient records, searching for documentation on the transition from curative to palliative care., Results: In the development of the turning point, the texts usually shift from statements about the patient's clinical status and technical findings to displaying uncertainty and openness to negotiation with different textual voices. This shift may represent a need to align or harmonize the attitudes of colleagues, family, and patient towards the turning-point decision. The patient's voice is mostly absent or reported only briefly when, in their notes, nurses gave an account of the patient's opinion. None of the physicians' notes provided a detailed account of patient attitudes, wishes, and experiences., Conclusion: In this article, we have analysed textual representations of patient transitions from curative to end-of-life care. The 'reality' behind the text has not been our concern. As the only documentation left, the patient record is an adequate basis for considering how patients are estimated and cared for in their last days of life.

Background: In the last years of life, burden of disease and disability and need of health- and social care often increase. Social, functional and psychological factors may be important in regard to social- and health care utilization. This study aims to describe use of health- and social care during the last year of life among persons living in ordinary housing or in assisted living facilities., Methods: A retrospective study examining health- and social care utilization during their last year of life, using a subsample from the Swedish twin registries individually linked to several Swedish national quality registries (NQR). Persons that died during 2008-2009 and 2011-2012 (n = 1518) were selected., Results: Mean age at death was 85.9 ± 7.3 (range 65.1-109.0). Among the 1518 participants (women n = 888, 58.5%), of which 741 (49%) were living in assisted living facilities and 1061 (69.9%) had at least one hospitalization during last year of life. The most common causes of death were cardiovascular disease (43.8%) and tumors (15.3%). A multivariable logistic regression revealed that living in ordinary housing, younger age and higher numbers of NQR's increased the likelihood of hospitalization., Conclusions: Persons in their last year of life consumed high amount of health- and social care although 12% did not receive any home care. Married persons received less home care than never married. Persons living in ordinary housing had higher numbers of hospitalizations compared to participants in assisted living facilities. Older persons and persons registered in fewer NQR's were less hospitalized.

Background: As the mortality attributable to dementia-related diseases in the United States escalates, providing quality and equitable end-of-life care for dementia patients across care settings has become a major public health challenge. Previous research suggests that place of death may be an indicator of quality of end-of-life care. This study aims to examine the geographical variations and temporal trends in place of death of dementia decedents in the US and the relationships between place of death of dementia decedents and broad structural determinants., Methods: Using nationwide death certificates between 2000 and 2014, we described the changes in place of death of dementia decedents across states and over time. Chi-square test for trend in proportions was used to test significant linear trend in the proportion of dementia decedents at difference places. State fixed effects models were estimated to assess the relationships between the proportion of dementia decedents at difference places and state-level factors, particularly availability of care facility resources and public health insurance expenditures., Results: Dementia decedents were more likely to die at home and other places and less likely to die at institutional settings over the study period. There was wide inter-state and temporal variability in the proportions of deaths at different places. Among state-level factors, availability of nursing home beds was positively associated with rates of nursing home/long term care deaths and negatively associated with rates of home deaths. Medicaid expenditure on institutional long term supports and services was positively associated with rates of nursing home/long term care deaths and negatively associated with rates of home deaths. Medicaid expenditure on home and community based services, however, had a positive association with rates of home deaths., Conclusions: There was a persistent shift in the place of death of dementia decedents from institutions to homes and communities. Increased investments in home and community based health services may help dementia patients to die at their homes. As home becomes an increasingly common place of death of dementia patients, it is critical to monitor the quality of end-of-life care at this setting.

Background: At a population level, conversations between clinicians and seriously ill patients exploring patients' goals and values can drive high-value healthcare, improving patient outcomes and reducing spending., Methods: We examined the impact of a quality improvement intervention to drive better communication on total medical expenses in a high-risk care management program. We present our analysis of secondary expense outcomes from a prospective implementation trial of the Serious Illness Care Program, which includes clinician training, coaching, tools, and system interventions. We included patients who died between January 2014 and September 2016 who were selected for serious illness conversations, using the "Surprise Question," as part of implementation of the program in fourteen primary care clinics., Results: We evaluated 124 patients and observed no differences in total medical expenses between intervention and comparison clinic patients. When comparing patients in intervention clinics who did and did not have conversations, we observed lower average monthly expenses over the last 6 ($6297 vs. $8,876, p = 0.0363) and 3 months ($7263 vs. $11,406, p = 0.0237) of life for patients who had conversations., Conclusions: Possible savings observed in this study are similar in magnitude to previous studies in advance care planning and specialty palliative care but occur earlier in the disease course and in the context of documented conversations and a comprehensive, interprofessional case management program., Implications: Programs designed to drive more, earlier, and better serious illness communication hold the potential to reduce costs., Level of Evidence: Prospectively designed trial, non-randomized sample, analysis of secondary outcomes., Competing Interests: Declaration of competing interest Dr. Block works as the Editor for Palliative Care for UpToDate. Drs. Lakin, Paladino, and Bernacki are supported by Sojourns Leadership Awards from the Cambia Health Foundation. None of the other authors report any conflicts of interest., (Copyright © 2020 Elsevier Inc. All rights reserved.)

Background: The purpose of this paper is to describe how end-of-life care is managed when life-support limitation is decided in a Pediatric Intensive Care Unit and to analyze the influence of the further development of the Palliative Care Unit., Methods: A 15-year retrospective study of children who died after life-support limitation was initiated in a pediatric intensive care unit. Patients were divided into two groups, pre- and post-palliative care unit development. Epidemiological and clinical data, the decision-making process, and the approach were analyzed. Data was obtained from patient medical records., Results: One hundred seventy-five patients were included. The main reason for admission was respiratory failure (86/175). A previous pathology was present in 152 patients (61/152 were neurological issues). The medical team and family participated together in the decision-making in 145 cases (82.8%). The family made the request in 10 cases (9 vs. 1, p = 0.019). Withdrawal was the main life-support limitation (113/175), followed by withholding life-sustaining treatments (37/175). Withdrawal was more frequent in the post-palliative group (57.4% vs. 74.3%, p = 0.031). In absolute numbers, respiratory support was the main type of support withdrawn., Conclusions: The main cause of life-support limitation was the unfavourable evolution of the underlying pathology. Families were involved in the decision-making process in a high percentage of the cases. The development of the Palliative Care Unit changed life-support limitation in our unit, with differences detected in the type of patient and in the strategy used. Increased confidence among intensivists when providing end-of-life care, and the availability of a Palliative Care Unit may contribute to improvements in the quality of end-of-life care.

Background: Family caregivers of patients at the end of life often experience care-related burden. To prevent caregiver burden and to enhance the capacity to provide care it is important to have insight in their support needs. The purpose of this study was to identify profiles of family caregivers who provide care to patients at the end of life at home., Methods: A Q-methodological study was conducted in which family caregivers ranked 40 statements on support needs and experiences with caregiving. Thereafter they explained their ranking in an interview. By-person factor analysis was used to analyse the rankings and qualitative data was used to support the choice of profiles. A set of 41 family caregivers with a variety on background characteristics who currently or recently provided care for someone at the end of life at home were included., Results: Four distinct profiles were identified; profile (1) those who want appreciation and an assigned contact person; profile (2) was bipolar. The positive pole (2+) comprised those who have supportive relationships and the negative pole (2-) those who wish for supportive relationships; profile (3) those who want information and practical support, and profile (4) those who need time off. The profiles reflect different support needs and experiences with caregiving., Conclusions: Family caregivers of patients at the end of life have varying support needs and one size does not fit all. The profiles are relevant for healthcare professionals and volunteers in palliative care as they provide an overview of the main support needs among family caregivers of patients near the end of life. This knowledge could help healthcare professionals giving support.

Objectives: We investigated trends in end-of-life hospitalizations among nursing home residents (NHR) over 10 years and looked at differences between age groups and sexes as well as the length of terminal hospital stays., Study Design: Retrospective cohort study based on health insurance claims data of the AOK Bremen/Bremerhaven. All NHR aged 65 years or more who died between 2006 and 2015 were included., Main Outcome Measures: We assessed the proportions of decedents who were in hospital on the day of death and during the last 3, 7, 14 and 30 days of life, stratified by two-year periods. Multiple logistic regressions were conducted to study changes over time, adjusting for covariates., Results: A total of 10,781 decedents were included (mean age 86.1 years, 72.1 % females). Overall, 29.2 % died in hospital, with a slight decrease from 30.3 % in 2006-2007 to 28.3 % in 2014-2015 (OR 0.86; 95 % CI 0.75-0.98). Of the 3150 terminal hospitalizations, 35.5 % lasted up to 3 days and the mean length of stay decreased from 9.0 (2006-2007) to 7.5 days (2014-2015). When looking at the last 7, 14 and 30 days of life, no changes over time were found. Male sex and younger age were associated with a higher chance of end-of-life hospitalization in almost all analyses., Conclusions: End-of-life hospitalizations of NHR are common in Germany. There has been a small decrease during recent years in the proportion of in-hospital deaths, but not of hospitalizations during the last 7, 14 and 30 days of life. This might be explained by shorter durations of hospital stays., (Copyright © 2020 Elsevier B.V. All rights reserved.)

Background: Socioeconomic inequalities in access to, and utilization of medical care have been shown in many jurisdictions. However, the extent to which they exist at end-of-life (EOL) remains unclear., Methods: Studies in MEDLINE, EMBASE, CINAHL, ProQuest, Web of Science, Web of Knowledge, and OpenGrey databases were searched through December 2019 with hand-searching of in-text citations. No publication date or language limitations were set. Studies assessing SES (e.g. income) in adults, correlated to EOL costs in last year(s) or month(s) of life were selected. Two independent reviewers performed data abstraction and quality assessment, with inconsistencies resolved by consensus., Results: A total of twenty articles met eligibility criteria. Two meta-analyses were performed on studies that examined total costs in last year of life - the first examined costs without adjustments for confounders (n = 4), the second examined costs that adjusted for confounders, including comorbidities (n = 2). Among studies which did not adjust for comorbidities, SES was positively correlated with EOL costs (standardized mean difference, 0.13 [95% confidence interval, 0.03 to 0.24]). However, among studies adjusting for comorbidities, SES was inversely correlated with EOL expenditures (regression coefficient, -$150.94 [95% confidence interval, -$177.69 to -$124.19], 2015 United States Dollars (USD)). Higher ambulatory care and drug expenditure were consistently found among higher SES patients irrespective of whether or not comorbidity adjustment was employed., Conclusion: Overall, an inequality leading to higher end-of-life expenditure for higher SES patients existed to varying extents, even within countries providing universal health care, with greatest differences seen for outpatient and prescription drug costs. The magnitude and directionality of the relationship in part depended on whether comorbidity risk-adjustment methodology was employed.

Background: Palliative care (PC) referral is recommended early in the course of advanced cancer. This study aims to describe, in an integrated onco-palliative care program (IOPC), patient's profile when first referred to this program, timing of this referral and its impact on the trajectory of care at end-of-life., Methods: The IOPC combined the weekly onco-palliative meeting (OPM) dedicated to patients with incurable cancer, and/or the clinical evaluation by the PC team. Oncologists can refer to the multidisciplinary board of the OPM the patients for whom goals and organization of care need to be discussed. We analyzed all patients first referred at OPM in 2011-2013. We defined the index of precocity (IP), as the ratio of the time from first referral to death by the time from diagnosis of incurability to death, ranging from 0 (late referral) to 1 (early referral)., Results: Of the 416 patients included, 57% presented with lung, urothelial cancers, or sarcoma. At first referral to IOPC, 76% were receiving antitumoral treatment, 63% were outpatients, 56% had a performance status ≤2 and 46% had a serum albumin level > 35 g/l. The median [1st-3rd quartile] IP was 0.39 [0.16-0.72], ranging between 0.53 [0.20-0.79] (earliest referral, i.e. close to diagnosis of incurability, for lung cancer) to 0.16 [0.07-0.56] (latest referral, i.e. close to death relatively to length of metastatic disease, for prostate cancer). Among 367 decedents, 42 (13%) received antitumoral treatment within 14 days before death, and 157 (43%) died in PC units., Conclusions: The IOPC is an effective organization to enable early integration of PC and decrease aggressiveness of care near the end-of life. The IP is a useful tool to model the timing of referral to IOPC, while taking into account each cancer types and therapeutic advances.

Objectives: Place of death (POD) is considered a key quality indicator for adult end of-life care, but paediatric evidence is limited. Data from Child Death Overview Panel (CDOP) databases provides an opportunity to describe trends in POD as regional paediatric palliative medicine (PPM) options have increased. Aims were to identify and describe trends in POD for children in South Yorkshire., Methods: Retrospective cohort study. Anonymised data extracted from five CDOP databases 2008-2015. Data included age, gender, ethnicity, postcode (outward code only), POD, classification and category of death. Descriptive statistical analysis using χ 2 test was used to assess intergroup differences., Results: 748 deaths were notified from 2008 to 2015. Neonatal deaths were excluded, 46% (n=345). Of non-neonatal deaths (n=403), 58% (n=232) were 'expected'. Of expected deaths (n=232), 19% (n=45) died in home, 19% (n=45) died in hospice and 61% (n=141) died in hospital. This was significantly different from comparable national data which showed considerably more hospital deaths. There was no significant change in POD over time., Conclusion: Hospital remains the POD for most children, whether deaths are 'expected' or not, suggesting specialised PPM should be expanded into the hospital setting. More research is needed regarding preference for POD. This study may help inform future service planning for PPM and hospice development., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2020. No commercial re-use. See rights and permissions. Published by BMJ.)

Objectives: To assess trends and factors associated with place of death among individuals with Alzheimer's disease-related dementias (ADRD)., Design: Cross-sectional analysis., Setting: Centers for Disease Control and Prevention Wide-ranging OnLine Data for Epidemiologic Research, 2003-2017., Participants: Natural deaths occurring between 2003 and 2017 for which ADRD was determined to be the underlying cause., Measurements: Place of death was categorized as hospital, home, nursing facility, hospice facility, and other. Aggregate data included age, race, Hispanic ethnicity, sex, urbanization, and census division. Individual-level predictors included age, race, Hispanic ethnicity, sex, marital status, and education., Results: From 2003 to 2017, nursing facility and hospital deaths declined from 65.7% and 12.7% to 55.0% and 8.0% while home and hospice facility deaths increased from 13.6% and .2% to 21.9% and 6.2%, respectively. Odds of hospital and hospice facility deaths declined with age while odds of nursing facility deaths increased with age. Male sex was associated with higher odds of hospital or hospice facility death and lower odds of home or nursing facility death. Nonwhite race, Hispanic ethnicity, and being married were associated with increased odds of hospital or home death and reduced odds of nursing facility death. More education was associated with higher odds of home or in a hospice facility death and reduced odds of death in a nursing facility or hospital. Significant disparities in place of death by urban-rural status were also noted., Conclusion: As ADRD deaths at home increase, the need for caregiver support and home-based palliative care may become more critical. Further research should examine the care preferences and experiences of ADRD patients and caregivers, the financial impact of home death on families and insurers, and explore factors that may contribute to differences in actual and preferred place of death. J Am Geriatr Soc 68:250-255, 2020., (© 2019 The American Geriatrics Society.)

Introduction: The epidemiology of lung cancer is evolving and caregivers need to address an emerging demographic, women, sometimes presenting at a young age. The effect of this ongoing change on thoracic oncology services and on the nursing population (registered nurses and auxiliary nurses) has not been evaluated., Methods: A quantitative analysis can help to control the biases that may have an impact on nursing staff identification with female patients. A categorical and automated qualitative study (Tropes software) of speech productions related to "difficult situations" was carried out., Results: Four contexts activating critical situations were identified: disagreement and conflict in care, a constraining situation of care, an overflow situation, particularly related to increased suffering of the patient and a feeling of being isolated in care delivery. Regarding the management of female patients, after the impact of disagreements in management, the feeling of care being constrained in the presence of a female patient with whom caregivers identify themselves is more significant than with regard to male patients., Conclusion: Support within the care team is essential, but not sufficient. Only a practice-based training context involving peers outside the team seems to help address the most impactful situations., (Copyright © 2020 SPLF. Published by Elsevier Masson SAS. All rights reserved.)

Hmong Americans have typically been unwilling to use biomedical palliative care for end-of-life needs. This has resulted in confusion and frustration for Hmong patients, families, and nurses. Hmongs' end-of-life care choices for family members usually involve in-home caregiving provided by the family using a combination of biomedicine and traditional healing methods. Health care decisions are made for the patient by the family and community in this familistic culture. A qualitative approach was used to explore the beliefs that ultimately determine end-of-life care goals and strategies for Hmong patients. Semistructured interviews were conducted with 15 family caregivers of terminally ill patients and 5 shamans and Hmong funeral officiants. Several themes affecting care choices were identified, including cultural legacies of the responsibility of end-of-life caregiving by the family, the desire for family privacy in caregiving, and the role of community in the care for the dying, as well as completion of the rituals that ensure the soul of the deceased reaches the afterlife. Suggestions for improving communication between Hmongs and biomedical providers include providing information about end-of-life care beliefs and strategies to biomedical care providers and providing information to Hmong patients and families about hospice and palliative care options and services to support family care.

Background: Austria has recently been embroiled in the complex debate on the legalization of measures to end life prematurely. Empirical data on end-of-life decisions made by Austrian physicians barely exists. This study is the first in Austria aimed at finding out how physicians generally approach and make end-of-life therapy decisions., Methods: The European end-of-life decisions (EURELD) questionnaire, translated and adapted by Schildmann et al., was used to conduct this cross-sectional postal survey. Questions on palliative care training, legal issues, and use of and satisfaction with palliative care were added. All Austrian specialists in hematology and oncology, a representative sample of doctors specialized in internal medicine, and a sample of general practitioners, were invited to participate in this anonymous postal survey., Results: Five hundred forty-eight questionnaires (response rate: 10.4%) were evaluated. 88.3% of participants had treated a patient who had died in the previous 12 months. 23% of respondents had an additional qualification in palliative medicine. The cause of death in 53.1% of patients was cancer, and 44.8% died at home. In 86.3% of cases, pain relief and / or symptom relief had been intensified. Further treatment had been withheld by 60.0%, and an existing treatment discontinued by 49.1% of respondents. In 5 cases, the respondents had prescribed, provided or administered a drug which had resulted in death. 51.3% of physicians said they would never carry out physician-assisted suicide (PAS), while 30.3% could imagine doing so under certain conditions. 38.5% of respondents supported the current prohibition of PAS, 23.9% opposed it, and 33.2% were undecided. 52.4% of physicians felt the legal situation with respect to measures to end life prematurely was ambiguous. An additional qualification in palliative medicine had no influence on measures taken, or attitudes towards PAS., Conclusions: The majority of doctors perform symptom control in terminally ill patients. PAS is frequently requested but rarely carried out. Attending physicians felt the legal situation was ambiguous. Physicians should therefore receive training in current legislation relating to end-of-life choices and medical decisions. The data collected in this survey will help political decision-makers provide the necessary legal framework for end-of-life medical care.

Background: Global annual deaths are rising. It is essential to examine where future deaths may occur to facilitate decisions regarding future service provision and resource allocation., Aims: To project where people will die from 2017 to 2040 in an ageing country with advanced integrated palliative care, and to prioritise recommendations based on these trends., Methods: Population-based trend analysis of place of death for people that died in Scotland (2004-2016) and projections using simple linear modelling (2017-2040); Transparent Expert Consultation to prioritise recommendations in response to projections., Results: Deaths are projected to increase by 15.9% from 56,728 in 2016 (32.8% aged 85+ years) to 65,757 deaths in 2040 (45% aged 85+ years). Between 2004 and 2016, proportions of home and care home deaths increased (19.8-23.4% and 14.5-18.8%), while the proportion of hospital deaths declined (58.0-50.1%). If current trends continue, the numbers of deaths at home and in care homes will increase, and two-thirds will die outside hospital by 2040. To sustain current trends, priorities include: 1) to increase and upskill a community health and social care workforce through education, training and valuing of care work; 2) to build community care capacity through informal carer support and community engagement; 3) to stimulate a realistic public debate on death, dying and sustainable funding., Conclusion: To sustain current trends, health and social care provision in the community needs to grow to support nearly 60% more people at the end-of-life by 2040; otherwise hospital deaths will increase.

Background: ALS is an incurable neurodegenerative disorder, with the recommendation that symptom management and palliative care start immediately or soon after diagnosis. However, little is known about healthcare utilization at the end of life in this patient group., Aim: To describe healthcare utilization at the end of life in patients who died from ALS., Design: We performed a retrospective cohort study using population-level administrative databases. The description of healthcare utilization was based on (1) validated quality indicators for end-of-life care, and (2) the European Federation of Neurological Societies guidelines on the clinical management of ALS., Setting: We included all people who died from ALS in Belgium between 2010 and 2015 (using ICD-10 code G12.2)., Results: 1636 people died from ALS in Belgium between 2010 and 2015. The mean age at death was 71 years (SD11.3), and 56% were men. Specialized palliative care was used by 44% at some point in the last two years of life. In the last month of life, 13% received tube feeding, 48% received diagnostic testing, 41% were admitted to a hospital, and 25% were admitted to an emergency department. Medications were used mainly to treat pain (43%), insomnia and fatigue (33%) and thrombosis (32%); 39% used riluzole. Non-invasive ventilation was used by 18%. 39% died at home., Conclusion: Administrative data provide a valuable source to describe healthcare utilization in small populations such as ALS, but more clinical evidence is needed on the advantages and disadvantages initiating or terminating treatments at the end of life., (Copyright © 2019 Elsevier B.V. All rights reserved.)

Appropriate and balanced decision-making is sentinel to goal setting and the provision of appropriate clinical care that are attuned to preserving the best interests of the patient. Current family-led decision-making in family-centric societies such as those in Singapore and other countries in East Asia are believed to compromise these objectives in favor of protecting familial interests. Redressing these skewed clinical practices employing autonomy-based patient-centric approaches however have been found wanting in their failure to contend with wider sociocultural considerations that impact care determinations. Evaluation of a number of alternative decision-making frameworks set out to address the shortcomings of prevailing atomistic and family-centric decision-making models within the confines of end-of-life care prove these alternative frameworks to be little better at protecting the best interests of vulnerable patients. As a result, we propose the Welfare Model that we believe is attentive to the relevant socio-culturally significant considerations of a particular case and better meets the needs of end-of-life care goals of preserving the welfare of patients. Employing a multi-professional team evaluation guided by regnant psychosocial, legal, and clinical standards and the prevailing practical and clinical realities of the particular patient's setting the Welfare Model provides a clinically relevant, culturally sensitive, transparent, and evidence-based approach to care determinations.

Background: Despite complex illness trajectories and a high symptom burden, palliative care has been sub-optimal for patients with end-stage kidney disease and hemodialysis treatment who have a high rate of hospitalization and intensive care towards end of life. There is a growing awareness that further development of palliative care is required to meet the needs of these patients and their family members. In this process, it is important to explore healthcare professionals' views on provision of care. The aim of this study was therefore to describe nurses' and physicians' perspectives on end-of-life and palliative care of patients treated with maintenance hemodialysis., Methods: Four focus group interviews were conducted with renal nurses (17) and physicians (5) in Sweden. Qualitative content analysis was used to analyze data., Results: Participants were committed to giving the best possible care to their patients, but there were challenges and barriers to providing quality palliative care in nephrology settings. Professionals described palliative care as end-of-life care associated with hemodialysis withdrawal or palliative dialysis, but also identified care needs and possibilities that are in line with an earlier integrated palliative approach. This was perceived as complex from an organizational point of view. Participants identified challenges related to coordination of care and different perspectives on care responsibilities that impacted symptom management and patients' quality of life. Communication issues relating to the provision of palliative care were revealed where the hemodialysis setting was regarded as an impediment, and personal and professional experiences, beliefs and knowledge were considered of major importance., Conclusions: Nurses and physicians identified a need for the improvement of both late and earlier palliative care approaches. The results highlighted a requirement for and possibilities of training, counselling and support of health care professionals in the dialysis context. Further, multi-professional palliative care collaborations should be developed to improve the coordination and organization of end-of-life and palliative care of patients and their family members. A climate allowing conversations about advance care planning throughout the illness trajectory may facilitate the gradual integration of palliative care alongside life-prolonging treatment for improved support of patients and families.