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Using a cross-sectional study, this article addresses end-of-life (EOL) care for older Iranian-American adults. The purposes are twofold: (a) to explore participants' preferences for home or hospital care in the event they face EOL conditions and (b) to learn how participants prefer to communicate these preferences. Results showed that about half of the 130 participants had communicated their EOL care preferences through written documents and/or verbal discussions. A set of factors predicted the preferences (χ 2 (9) = 17.42, p < .042) and communications (χ 2 (9) = 19.54, p = .021). Regression models indicated that higher scores of social support ( p = .013) and greater numbers of cohabitants ( p = .021) were associated with a preference for home care, and experience of a loved one's death was associated with participants being willing to communicate their preferences for type of care ( p = .015). This study can bridge the gap between culturally diverse older adults' preferences and types of EOL care they ultimately receive.

Introduction: Dying patients with implantable defibrillators (ICD) have a risk of receiving unnecessary shocks before death. The aim of this study was to investigate if deactivation of shock therapy at end-of-life has increased since publication of new guidelines in 2010 on ICD management., Method and Results: This is a study of two groups of ICD patients who died in hospitals before and after publication of new guidelines. Group 1 consists of 89 patients who died between 2003 and 2010. Group 2 consists of 252 patients, the total number of ICD patients in Sweden who died in hospital during 2014. Data was obtained from the Swedish ICD and Pacemaker Registry, Swedish Tax Agency and patient medical notes. Two-thirds died in wards other than Cardiology. Fifty-four percent in group 1 had a Do-Not-Resuscitate-order (DNR) compared to 73% in group 2. Shock deactivation was present in 52% in group 1 and 67% in group 2. The difference in shock deactivation between group 1 and 2 was only significant (p = 0.014) for DNR-patients treated in Cardiology. A significant difference (p = 0.036) was found in deactivation within group 2 between DNR-patients in Cardiology vs. DNR-patients in Non-Cardiology wards., Conclusion: Two-thirds of ICD patients die in wards other than Cardiology. Since publication of guidelines on ICD management there is a general increase in shock deactivation for DNR-patients, but only significant for patients in Cardiology. This implicate that actions have to be taken for patients treated in Non-Cardiology wards to bridge the gap between guidelines recommendations and clinical practice., (Copyright © 2019 Elsevier B.V. All rights reserved.)

Amid the profile of Medical Assistance in Dying (MAID) and a prevailing interest to support living until death, discussions of appropriate care and care settings for dying abound. The when and how of easing the passage from this corporeal being to a state of other being, whatever you believe that to be, has been focal in healthcare discussions in recent years. I remember a time when the notion of "palliative care" was somewhat novel, in later years when a family member was the recipient of excellent end-of-life care, but still many recent instances in which we, "the system" fail to ensure that that final life journey is aligned (as much as possible) with a person's final wishes. Alas, a 2013 survey by the Canadian Institute for Health Information (CIHI) showed that a majority of Canadians preferred to die at home, but few (15%) died outside of a hospital (CIHI 2018)., (Copyright © 2019 Longwoods Publishing.)

Background: Physician Orders for Life-Sustaining Treatment (POLST) is an advance care planning tool that is designed to document end-of-life (EoL) care wishes of those living with limited life expectancies. Although positive impacts of POLST program has been studied, variations in state-specific POLST programs across the nation remain unknown. Objective: Identify state variations in POLST forms and determine if variations are associated with program maturity status. Design: Environmental scan. Measurements: Using the national POLST website, state-specific POLST program characteristics were examined. With available sample POLST forms, EoL care options were abstracted. Results: Of all 51 states (50 United States states and Washington, D.C examined), the majority ( n  = 48, 98%) were actively participating in POLST; 3 states (5.9%) had Mature status, 19 states and District of Columbia (39.2%) were Endorsed, 24 states were in the developing phase (47.1%), and 4 states (7.8%) were nonconforming. Forty-five states (88.2%) had forms available for review. Antibiotic and intravenous fluid options were identified in 32 (71.1%), and 33 (73.3%) POLST forms, respectively. Hospital transfer and use of oxygen were mentioned in all forms. Use of respiratory devices (i.e., continuous positive airway pressure and bi-level positive airway pressure) were mentioned on 27 (60%) forms, whereas ventilator or intubation use were mentioned in 36 POLST forms (80%). No associations were found between POLST maturity status and provision of treatment options. Conclusions: Variations in integration of infection and symptom management options were identified. Further research is needed to determine if there are regional factors associated with provision of treatment options on POLST forms and if there are differences in actual rates of infection or symptoms reported.

Objective: The goal of this scoping review was to identify existing palliative models in long-term care (LTC) homes and differentiate between the key components of each in terms of training/capacity-building strategies; resident, family and staff support; and advance care planning (ACP) and goals-of-care discussions., Methods: We conducted a scoping review based on established methods to summarize the international literature on palliative models and programs for LTC. We analyzed the data using tabular summaries and content analysis., Results: We extracted data from 46 articles related to palliative programs, training/capacity building, family support, ACP and goals of care. Study results highlighted that three key components are needed in a palliative program in LTC: (1) training and capacity building; (2) support for residents, family and staff; and (3) ACP, goals-of-care discussion and informed consent., Conclusion: This scoping review provided important information about key components to be included in a palliative program in LTC. Future work is needed to develop a model that suits the unique characteristics in the Canadian context., (Copyright © 2019 Longwoods Publishing.)

Aim: The purpose of the present study was to collate examples of end-of-life care guidelines from various counties, examine their contents, and gain an overall picture of how end-of-life care guidance is offered to physicians and care providers internationally., Methods: In this study, eight researchers worked independently to source and examine national-level end-of-life care guidelines from different countries and regions. Data collected by each researcher were gathered into a unified table. The items in the table included basic information (publisher, year, URL etc.) and more specific items, such as the presence/absence of legal information and family's role in decision-making. These data were then used to identify trends, and examine the mechanics and delivery of guidance on this topic., Results: A total of 54 guidelines were included in the study. All the guidelines were published between 2000 and 2016, and 60% (n = 33) were published after 2012. The length of the guidelines varied from two to 487 pages (median 38 pages), and had different target audiences - both lay and professional. A total of 38 (70%) of the guidelines included information about the relevant laws and legal issues, 47 (87%) offered advice on withholding and withdrawing treatment, 46 (85%) discussed the family's role in decision-making and 46 (85%) emphasized the teamwork aspect of care., Conclusions: The present findings show that end-of-life care guidelines are generally made reactively in response to the trend toward patient-centered care, and that to create effective guidelines and implement them requires multilevel cooperation between governmental bodies, healthcare teams, and patients and their families. Geriatr Gerontol Int 2019; 19: 847-853., (© 2019 Japan Geriatrics Society.)

Nearly 20 years ago the EURONIC study reported that French neonatologists sometimes deemed it legitimate to terminate the lives of newborn infants when the prognosis appeared extremely poor. Parents were not always informed of these decisions. Major change has occurred since then and is described herein., Material and Methods: A survey was conducted in the Île-de-France region, from 1 January to 31 January 2016. Professionals from 15 neonatal intensive care units (NICUs) were invited to complete a questionnaire., Results: A total of 702 questionnaires were collected and 670 responses were analyzed. Knowledge of the law differed according to professional status, with 71% of MDs (medical staff, MS), compared with 28% of nonmedical staff (NMS) declaring that they had good knowledge of the law. Most MDs and NMS believed that withholding or withdrawing life-sustaining treatments (WWLST) could be decided and implemented after a delay. Half of them thought that WWLST would always result in death. Although required by law, a consulting MD attended the collegial meeting required before deciding on WWLST in only half of the cases. Parents were almost always informed of the decision thereafter by the physician in charge of their infant. The most frequent disagreement with parents was observed when WWLST was the option selected. In this case, most professionals suggested postponing WWLST, continuing intensive care and dialogue with parents, aiming at a final shared decision. Major differences were observed between NICUs with regard to the withdrawal of artificial nutrition and hydration. Finally, 14% of MDs declared that infant active terminations of life still occurred in their NICU. Major differences concern WWLST and active termination of life, whose meaning has been partly modified since 2001., Conclusion: Several major changes were observed in this survey: (1) treatment withdrawal decisions are made today in agreement with the law; (2) parents' information and involvement in the decision process have profoundly changed; (3) active termination of life (euthanasia) very rarely occurs; only at the end of a process in accordance with ethical principles and within the law is this decision made., (Copyright © 2019 French Society of Pediatrics. Published by Elsevier Masson SAS. All rights reserved.)

Patients with hematologic malignancies (HMs) often receive poor-quality end-of-life care. This study aimed to identify trends in end-of-life care among patients with HM in Brazil. We conducted a retrospective cohort study (2015-2018) of patients who died with HM, using electronic medical records linked to health insurance databank, to evaluate outcomes consistent with health-care resource utilization at the end of life. Among 111 patients with HM, in the last 30 days of life, we found high rates of emergency department visits (67%, n = 75), intensive care unit admissions (56%, n = 62), acute renal replacement therapy (10%, n = 11), blood transfusions (45%, n = 50), and medical imaging utilization (59%, n = 66). Patients received an average of 13 days of inpatient care and the majority of them died in the hospital (53%, n = 58). We also found that almost 40% of patients (38%, n = 42) used chemotherapy in the last 14 days of life. These patients were more likely to be male (64% vs 22%; P < .001), to receive blood transfusions (57% vs 38%; P = .05), and to die in the hospital (76% vs 39%; P = .009) than patients who did not use chemotherapy in the last 14 days of life. This study suggests that patients with HM have high rates of health-care utilization at the end of life in Brazil. Patients who used chemotherapy in the last 14 days of life were more likely to receive blood transfusions and to die in the hospital.

Background: A growing number of older people, mainly women, live in single households. They represent a vulnerable group as staying at home may turn out challenging when care needs increase, particularly at the end of life. Non-kin-carers can play an essential role in supporting individuals' preferences to stay at home. In research little attention has been paid to non-kin-carers, such as friends and neighbors, yet. Thus, the Older People Living Alone (OPLA) study will evaluate whether non-kin support is robust enough to enable care dependent people to stay at home even at the end of life. This paper aims to introduce the research protocol., Methods: We plan to apply a qualitative longitudinal study to better understand how older people living alone and their non-kin-carers manage to face the challenges with increased care needs towards the end-of-life. We will conduct serial interviews with the older persons living alone and their non-kin-carers. A total of 20-25 complete data sets and up to 200 personal interviews were planned. These will be complemented by regular telephone contacts. All interviews will be analysed following the grounded theory approach and strategies for reconstructing case trajectories, supported by MAXQDA software. In the course of the study, inter- and transdisciplinary workshops shall assure quality and support knowledge transfer., Discussion: This study protocol aims to guide research in a field that is difficult to approach, with regard to its topic, methodology and the interdisciplinary approach. As this study introduces longitudinal qualitative research methodology in the field of home care in Austria, a deeper understanding of (end-of-life-) care trajectories will be enhanced, which is of major relevance for future care planning. With investment in additional reflexivity and communication procedures innovative results and robust knowledge are expected outcomes.

Background: Despite the perceived ethical, personal and health service benefits of advance care planning (ACP), the extent to which older and seriously ill Australian inpatients have considered future health decisions remains uncertain. This study aimed to determine in a sample of older and seriously ill inpatients, the proportion who had: 1) engaged in four advance care planning (ACP) activities; 2) not engaged in ACP activities but wanted to; and 3) reasons why they had not engaged., Methods: Cross-sectional face-to-face standardised interview survey with inpatients in a tertiary referral centre who were either: aged 80+ years; aged 55+ years with progressive chronic disease(s); or judged by treating clinicians as having a life expectancy of less than 12 months. Patients indicated whether they had engaged in four ACP activities: (1) appointed medical substitute-decision-maker(s), (2) recorded end-of-life wishes in an advance directive or care plan; and talked about their end-of-life wishes with their: (3) support persons and/or (4) doctors. Patients who had not engaged in activities were asked whether they wished this to occur and reasons why., Results: One hundred eighty-six inpatients consented to the study (80% of approached). Of these, 9% (n = 16) had engaged in four ACP activities; 27% (n = 50) had not engaged in any. Half (n = 94, 52%) had appointed a medical substitute-decision-maker, 27% (n = 50) had recorded wishes in an advance directive or care plan, 51% (n = 90) had talked about their end-of-life wishes with support persons and 27% (n = 48) had talked with their doctor. Patients who wanted to, but had not, engaged in the four ACP activities were unaware they could record wishes or appoint decision-makers, or indicated providers had not initiated conversations., Conclusion: Relatively few inpatients had engaged in all four ACP activities. More inpatients had discussed end of life issues with family and appointed substitute decision makers, than completed written documents or talked with doctors. Community education and a more active role for community and hospital-based providers in supporting patients and families to collaboratively resolve end-of-life decisions may increase the probability wishes are known and followed.

This study developed an end-of-life (EOL) care nursing knowledge scale for Japanese geriatric nurses (ELNKS-JG) to measure nurse knowledge of EOL care for older adults. It also was used to evaluate the quality of The End-of-Life Nursing Education Consortium-Japan Geriatric. Participants were 1168 nurses employed in 32 institutions across Japan. The items of our measure were developed to cover 8 important topics: principles of EOL care for older adults; pain management; symptom management; ethics of care; cultural and spiritual considerations; communication; loss, grief, and bereavement; and caring for final days. The measure included 51 items with an overall Cronbach α coefficient of 0.87 and an intraclass correlation coefficient of 0.81. Our measure, the ELNKS-JG, was confirmed to have good internal consistency, test-retest reliability, content validity, and known-groups validity. This scale's items included knowledge about noncancerous diseases, physical changes due to aging, family care, and multidisciplinary collaboration. The ELNKS-JG comprehensively measures a nurse's knowledge of EOL care for older adults in any EOL setting. Furthermore, this scale can evaluate educational programs aimed at improving care quality and encouraging related activities in facilities that provide EOL care.

Purpose: End-of-life (EOL) chemotherapy has been described as the most widespread, wasteful, and unnecessary practice in oncology, with benchmarking aimed to reduce physician use of chemotherapy within 14 days of EOL. We evaluated the recent transformation of EOL chemotherapy and targeted therapy practices nationally., Methods: In patients older than 65 years of age who died as a result of breast (n = 19,887), lung (n = 79,613), colorectal (n = 29,844), or prostate (n = 17,910) cancer between 2007 and 2013, we evaluated the guideline-benchmarked measure of chemotherapy use within 14 days of EOL in SEER-Medicare. Comparison outcomes were nonbenchmarked measures of chemotherapy and targeted therapy across time points within 6 months of EOL. Cochran-Armitage test was used to evaluate temporal trends. Multilevel logistic models and intraclass correlation coefficient was used to evaluate variation in EOL chemotherapy use at the physician level., Results: From 2007 to 2013, chemotherapy within 14 days of EOL declined from 6.7% to 4.9% of patients ( P trend < .001; ∆ = -1.8%). Similar declines occurred for chemotherapy within 1 month ( P trend < .001; ∆ = -1.8%) and 2 months ( P trend < .001; ∆ = -1.3%) of EOL. In contrast, chemotherapy within 4 to 6 months of EOL rose ( P trend ≤ .04; ∆ = 0.7% to 1.7%), and 43.0% of all patients received chemotherapy within 6 months of EOL. Frequency of targeted therapy use across all time points within 6 months of EOL was stable to marginally rising from 2007 to 2013 ( P trend = .09 to .82; ∆ = -0.2% to 1.8%); overall, 1.2% received targeted therapy within 14 days and 3.6% within 1 month of EOL. By 2013, 13.2% of patients received any targeted therapy within 6 months of EOL. In a multilevel model, 5.19% (intraclass correlation coefficient) of variation in 14-day EOL chemotherapy was attributed to the physician level., Conclusion: With national benchmarking, chemotherapy within 14 days of EOL successfully declined to less than 5%, with comprehensive benchmark uptake by physicians. Results may inform current strategies to help to achieve high-value EOL oncology practice.

Background: Few studies have specifically assessed the scope, nature and challenges of palliative and end-of-life care in rural general practice. These knowledge gaps limit the development of evidence-based policies and services for patients in the last months of life. This study aimed to explore the perspectives of general practitioners (GPs) and other stakeholders on rural GPs' involvement and challenges in providing palliative and end-of-life care in regional Australia., Methods: A qualitative study involving five focus groups with 26 GPs based in rural/regional Western Australia together with 15 individual telephone interviews with four GPs and 11 other stakeholders involved in end-of-life care across Australia., Results: The rural GPs' central role in end-of-life care was recognized by the majority of participants but multiple challenges were also identified. Some challenges were comparable to those found in urban settings but others were more pronounced, including resource limitations and lack of training. Inappropriate payment models discouraged GPs' involvement in some aspects of end-of-life care, such as case conferences and home visits. Compared to GPs in urban settings, those in rural/regional communities often reported closer doctor-patient relationships and better care integration and collaboration. These positive aspects of care could be further developed to enhance service provision. Our study highlighted the importance of regular interactions with other professionals and patients in providing end-of-life care, but many GPs and other stakeholders found such interactions more challenging than the more "technical" aspects of care., Conclusions: Rural/regional GPs appear to be disproportionately affected by inappropriate payment models and limited resources, but may benefit from closer doctor-patient relationships and better care integration and collaboration relative to urban GPs. Systematic collection of empirical data on GP management at end-of-life is required to build on these strengths and address the challenges.

Several immune checkpoint inhibitor therapies (CPIs) have been approved to treat metastatic urothelial cell carcinoma (mUC). Because of the favorable toxicity profile of CPI compared with chemotherapy, oncologists may have a low threshold to prescribe CPI to patients near the end of life. We evaluated trends in initiation of end-of-life systemic therapy in 1,637 individuals in the Flatiron Health Database who were diagnosed with mUC between 2015 and 2017 and who died. Rates of systemic therapy initiation in the last 30 and 60 days of life were 17.0% and 29.8%, respectively. The quarterly proportion of patients who initiated CPI within 60 days of death increased from 1.0% to 23% during the study period ( p trend < .001). After CPI approval, end-of-life CPI initiation significantly increased among patients with poor performance status ( p trend = .020) and did not significantly change among individuals with good performance status. The quarterly proportion of patients who initiated any systemic therapy at the end of life doubled (17.4% to 34.8%) during the study period, largely explained by increased CPI use. These findings suggest a dramatic rise in CPI use at the end of life in patients with mUC, a finding that may have important guideline and policy implications., Competing Interests: Disclosures of potential conflicts of interest may be found at the end of this article., (© AlphaMed Press 2019.)

Purpose: The aim of this study is to illuminate how nurses working in an intensive care unit perceive their professional duties regarding end-of-life care based on their end-of-life care experience., Design and Methods: A qualitative research design utilising focus-group interviews was employed. Two focus groups with twelve nurses were recruited, one consisting of nurses with less than five years of clinical experience in intensive care units and the other with more than five years of experience., Findings: An analysis of the nurses' explorations of end-of-life care in an intensive care unit for patients facing impending death revealed three main themes: (1) facing an extreme change in human existence, (2) being in the presence of the patient's transition and (3) being prepared as an intensive care unit nurse. These three themes covered a total of 16 subthemes., Conclusion: The findings of this study outline how intensive care unit nurses perceive dying patients and how they manage end-of-life care. It also illustrates how patients and their families can be included in the process, and this should be a component of nurses' education regarding end-of-life care., (Copyright © 2018 Elsevier Ltd. All rights reserved.)

Purpose: It is imperative to provide quality end-of-life (EOL) care for patients with cancer. Although rates of hospice use within the Veterans Health Administration have improved, antineoplastic administration and intensive care unit (ICU) admission at the EOL, indicators of aggressive care, have not clearly declined over recent years., Methods: We identified 32,665 veterans diagnosed with stage IV lung, colorectal, or pancreatic cancer who died between 2009 and 2016 using a novel EOL Dashboard Tool created from Veterans Administration Cancer Registry data. This EOL tool reports the incidence of antineoplastic drug use in the last 14 days of life, ICU admission in the last 30 days of life, and hospice admission or consult. Change from 2009 to 2016 was assessed using a repeated measures one-way analysis of variance with post hoc test for linear trend of time for individual cancers and two-way analysis of variance for all cancers combined., Results: Antineoplastic use in the last 14 days of life declined from 6.8% in 2009 to 4.4% in 2016 ( P = .03). ICU admission in the last 30 days did not change significantly, from 13.3% in 2009 to 14.7% in 2016. The exception was patients with stage IV lung cancer, in whom ICU admissions increased from 12.9% to 16.2% ( P = .01). Patients using hospice services increased from 32.4% to 52.6% ( P < .01)., Conclusion: Although antineoplastic administration at the EOL is declining for veterans with stage IV cancer, ICU admissions are unchanged and becoming more common in stage IV lung cancer despite increasing hospice use.

Advance care planning is being increasingly recognized as a component of quality in end-of-life care, but standardized documentation in the electronic health record has not yet been achieved, undermining interdisciplinary communication about care needs and limiting research opportunities.We examined the electronic health records of nine adolescent and young adults with cancer who died after participation in an advance care planning clinical trial (N = 30). In this secondary analysis of this subgroup, disease trajectory and end-of-life information were abstracted from the electronic health record, and treatment preferences from the original study were obtained.All deceased participants older than 18 years had a surrogate decision maker identified in the electronic health record, and all deceased participants had limitations placed on their care, varying from 1.5 hours up to 2 months before death. However, assessment of relations between treatment preferences and end-of-life care was difficult and revealed the presence of circumstances that advance care planning is designed to avoid, such as family conflict. Lack of an integrated health care record regarding advance care planning and end-of-life care makes both care coordination and examination of the association between planning and goal concordant care more difficult.

Background/aim: Because aggressive oncological management just prior to death constitutes a substantial proportion of end-of-life (EOL) costs, we investigated patterns of EOL oncologic care for stage IV non-small cell lung cancer (NSCLC) in USA to better determine at which point in the patient's management new treatments were being initiated., Materials and Methods: The National Cancer Database was queried for stage IV NSCLC patients who received any cancer-directed therapy with known timing thereof., Results: A total of 281,990 stage IV NSCLC patients were analyzed. Of all patients, 10.8% commenced any first-course cancer therapy within four weeks of death, and 24.5% within eight weeks of death., Conclusion: 10-15% of stage IV NSCLC patients start cancer therapy within four weeks of death, and 25-30% within eight weeks. This represents a population for whom cancer therapy may not be required, which has implications on reducing EOL healthcare costs., (Copyright© 2019, International Institute of Anticancer Research (Dr. George J. Delinasios), All rights reserved.)

Latinos are less likely to have an advance care plan, use hospice or palliative care services, and have conversations about end of life than the general population. This article describes processes and outcomes of a Latino lay health advisor advance care planning training program in eastern North Carolina. An exploratory case study was used to understand the perspectives of Latino leaders. Two Latino leaders completed an advance care planning training in 2016. Data were generated from field notes, interviews, and observations. A description of the social and contextual conditions in the study setting facilitated data analysis. The primary finding, "planting the seeds," was the strategy that began the conversation of advance care planning. "Planting the seeds" meant introducing the topic carefully to ensure the person is ready to listen, the information will be accepted, and capacity will be gained to make informed decisions. Training Latino lay health advisors in advance care planning has the potential to eliminate health disparities.

Background: Little is known about the role of geographic access to inpatient palliative and end of life care (PEoLC) facilities in place of death and how geographic access varies by settlement (urban and rural). This study aims to fill this evidence gap., Methods: Individual-level death data in 2014 (N = 430,467, aged 25 +) were extracted from the Office for National Statistics (ONS) death registry and linked to the ONS postcode directory file to derive settlement of the deceased. Drive times from patients' place of residence to nearest inpatient PEoLC facilities were used as a proxy estimate of geographic access. A modified Poisson regression was used to examine the association between geographic access to PEoLC facilities and place of death, adjusting for patients' socio-demographic and clinical characteristics. Two models were developed to evaluate the association between geographic access to inpatient PEoLC facilities and place of death. Model 1 compared access to hospice, for hospice deaths versus home deaths, and Model 2 compared access to hospitals, for hospital deaths versus home deaths. The magnitude of association was measured using adjusted prevalence ratios (APRs)., Results: We found an inverse association between drive time to hospice and hospice deaths (Model 1), with a dose-response relationship. Patients who lived more than 10 min away from inpatient PEoLC facilities in rural areas (Model 1: APR range 0.49-0.80; Model 2: APR range 0.79-0.98) and urban areas (Model 1: APR range 0.50-0.83; Model 2: APR range 0.98-0.99) were less likely to die there, compared to those who lived closer (i.e. ≤ 10 min drive time). The effects were larger in rural areas compared to urban areas., Conclusion: Geographic access to inpatient PEoLC facilities is associated with where people die, with a stronger association seen for patients who lived in rural areas. The findings highlight the need for the formulation of end of life care policies/strategies that consider differences in settlements types. Findings should feed into local end of life policies and strategies of both developed and developing countries to improve equity in health care delivery for those approaching the end of life.

In An NHS Trust and others v Y and another, the Supreme Court was asked to address the question of whether a court order must always be obtained before clinically assisted nutrition and hydration (CANH), which is keeping alive a person with a prolonged disorder of consciousness (PDOC). This case note explores the Court's decision to dispense with the need for such a court order and analyses that important change in approach from the perspective of the right to life protected in Article 2 European Convention on Human Rights (ECHR) as well as in the broader context of end of life decision-making., (© The Author(s) 2019. Published by Oxford University Press; All rights reserved. For permissions, please email: journals.permissions@oup.com.)

Background: Children with complex chronic conditions (CCCs) require a disproportionate share of health care services and have high mortality rates, but little is known about their end-of-life care., Methods: We performed a retrospective population-based analysis using a California State administrative database of children aged 1 to 21 years with a CCC who died of disease-related causes between 2000 and 2013. Rates of and sociodemographic and clinical factors associated with previously defined inpatient end-of-life intensity indicators were determined. The intensity indicators included: (1) hospital death, (2) receipt of a medically intense intervention within 30 days of death (ICU admission, cardiopulmonary resuscitation, hemodialysis, and/or intubation), and (3) having ≥2 intensity markers (including hospital death)., Results: There were 8654 children in the study population with a mean death age of 11.8 years (SD 6.8). The 3 most common CCC categories were neuromuscular (47%), malignancy (43%), and cardiovascular (42%). Sixty-six percent of the children died in the hospital, 36% had a medically intense intervention in the last 30 days of life, and 35% had ≥2 intensity markers. Living in a low-income neighborhood was associated with increased odds of hospital death, a medically intense intervention, and ≥2 intensity markers. Hispanic and "other" race and/or ethnicity were associated with hospital death and ≥2 intensity markers. Age 15 to 21 years was associated with hospital death, a medically intense intervention, and ≥2 intensity markers., Conclusions: Sociodemographic disparities in the intensity of end-of-life care for children with CCCs raise concerns about whether all children are receiving high-quality and goal-concordant end-of-life care., Competing Interests: POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose., (Copyright © 2019 by the American Academy of Pediatrics.)

Background and Objectives: The development of advance care plans (Plans) in general practice can be time consuming. End-of-life care should reflect an individual’s documented preferences. The aim of this study was to examine the content and implementation of Plans in hospital during end-of-life care., Methods: A retrospective cohort study of the hospital medical records of decedents aged ≥75 years was performed to assess Plan content and implementation., Results: Of the 536 decedents, 52 had a Plan. There were 17 cases where life-prolonging treatment was given and contradicted preferences listed in the Plan. This included instances of intubation, surgery and curative medication., Discussion: General practice staff investment in advance care planning should be reflected in the utilisation of Plans and, where medically indicated, respect for patients’ preferences.

Background: As the population ages, the prevalence of various chronic diseases increases. Palliative care for patients at the end of life with a noncancer diagnosis is currently limited because of the difficulties of demarcating the boundaries of the end-of-life care period and of determining the various care needs of patients at the end of life., Purpose: This study aimed to investigate the levels of importance and difficulty of the multidimensional care needs for patients with a noncancer diagnosis during various end-of-life stages., Methods: This study is a retrospective survey. Home healthcarenurse specialists (HHNS) reviewed medical and nursing records and responded to a structured questionnaire. The caring experiences of HHNS with 115 patients, who were 40 years or older, had received home care nursing throughout the stable (between the onset of the end-of-life stage and 1 week before death) and near-death (1 week before death) stages at Seoul St. Mary's Hospital in Korea, and had died between September 1, 2014, and December 31, 2015, were analyzed., Results: The care needs of "coordination among family or relatives" and "support for fundamental needs" were more important in the stable stage than in the near-death stage. The care need of "loss, grief care" was more important in the near-death stage than in the stable stage. The care need of "physical symptoms management" was the most difficult to meet in both stages. Lower Palliative Performance Scale score was associated with a higher level of care need, particularly in the "management of physical symptoms" and "psychological support" realms in the stable stage and in the "coordination among family or relatives" realm in both stages., Conclusions: End-of-life stage and initial score on the Palliative Performance Scale were found to have a significant influence on the multidimensional care needs of patients with a noncancer diagnosis. Thus, healthcare professionals should assess patient care needs according to disease trajectory to provide continuous and holistic care.

The practice whereby terminally ill patients choose to end their own lives painlessly by ingesting a drug prescribed by a physician has commonly been referred to as physician-assisted suicide. There is, however, a strong trend forming that seeks to deny that this act should properly be termed suicide. The purpose of this paper is to examine and reject the view that the term suicide should be abandoned in reference to what has been called physician-assisted suicide. I argue that there are no good conceptual or philosophical reasons to avoid the suicide label. I contend that intending one's death is essential to the nature of suicide, and this intention is normally required on the part of the terminally ill patient when she knowingly takes a life-ending drug. Additionally, the analysis shows that any plausible strategy that avoids the term suicide is counteracted by the way in which advocates of the practice want to make it legal.

As a result of advances in pediatric care, the majority of patients born with congenital heart disease (CHD) survive into adulthood [1]. Effective transfer and transition programs assure that patients with CHD remain in follow-up and receive continuous holistic care. Unfortunately, adult patients with CHD carry residual lesions and sequelae putting them at risk for premature death related to re-interventions or complications; most commonly heart failure and arrhythmia [2]. The scientific adult CHD (ACHD) community has been working hard to identify variables related to worse outcomes, modifying those where possible in order to improve survival. Indeed, survival in adults with CHD has increased, but consequently, on top of CHD-related complications, patients are increasingly exposed to the standard cardiovascular risk factors. Therefore, a program for lifelong coaching on health behavior and life style management becomes indispensable. More emerging is that a substantial number of patients, in particular those with complex heart defects, will eventually end up in a stage with hardly any medical or interventional options left. Our healthcare provision has to be prepared to organize care for this specific group of patients who will die prematurely and require the timely development and establishment of advanced care planning. Advanced care planning should preferentially be set-up in expert CHD centers. The long-lasting relationship in ACHD care with healthcare providers offers an excellent basis with regards to prognosis, advanced care planning and end-of-life issues., (Copyright © 2018 Elsevier B.V. All rights reserved.)

Background: Previous research has focussed on individual-level determinants of nursing home admission (NHA), although substantial variation in the prevalence of NHA between European countries suggests a substantial impact of country of residence. The aim of this analysis was to assess individual-level determinants and the role of country of residence and specifically a country`s public institutional long-term care infrastructure on proxy-reported NHA in the last year of life., Methods: We analysed data from 7,018 deceased respondents (65+) of the Survey of Health, Ageing and Retirement in Europe (2004-2015, 16 countries) using Bayesian hierarchical logistic regression analysis in order to model proxy-reported NHA., Results: In total, 14% of the general older population utilised nursing home care in the last year of life but there was substantial variation across countries (range = 2-30%). On the individual-level, need factors such as functional and cognitive impairment were the strongest predictors of NHA. In total, 18% of the variance of NHA was located at the country-level; public expenditure on institutional care strongly affected the chance of NHA in the last year of life., Conclusion: On the individual-level, the strong impact of need factors indicated equitable access to NHA, whereas differences in public spending for institutional care indicated inequitable access across European countries., Competing Interests: The authors have declared that no competing interests exist.

Background: Critically ill patients may die despite invasive intervention. In this study, we examine trends in the application of two such treatments over a decade, namely, endotracheal ventilation and vasopressors and inotropes administration, as well as the impact of these trends on survival durations in patients who die within a month of ICU admission., Methods: We considered observational data available from the MIMIC-III open-access ICU database and collected within a study period between year 2002 up to 2011. If a patient had multiple admissions to the ICU during the 30 days before death, only the first stay was analyzed, leading to a final set of 6,436 unique ICU admissions during the study period. We tested two hypotheses: (i) administration of invasive intervention during the ICU stay immediately preceding end-of-life would decrease over the study time period and (ii) time-to-death from ICU admission would also decrease, due to the decrease in invasive intervention administration. To investigate the latter hypothesis, we performed a subgroups analysis by considering patients with lowest and highest severity. To do so, we stratified the patients based on their SAPS I scores, and we considered patients within the first and the third tertiles of the score. We then assessed differences in trends within these groups between years 2002-05 vs. 2008-11., Results: Comparing the period 2002-2005 vs. 2008-2011, we found a reduction in endotracheal ventilation among patients who died within 30 days of ICU admission (120.8 vs. 68.5 hours for the lowest severity patients, p<0.001; 47.7 vs. 46.0 hours for the highest severity patients, p = 0.004). This is explained in part by an increase in the use of non-invasive ventilation. Comparing the period 2002-2005 vs. 2008-2011, we found a reduction in the use of vasopressors and inotropes among patients with the lowest severity who died within 30 days of ICU admission (41.8 vs. 36.2 hours, p<0.001) but not among those with the highest severity. Despite a reduction in the use of invasive interventions, we did not find a reduction in the time to death between 2002-2005 vs. 2008-2011 (7.8 days vs. 8.2 days for the lowest severity patients, p = 0.32; 2.1 days vs. 2.0 days for the highest severity patients, p = 0.74)., Conclusion: We found that the reduction in the use of invasive treatments over time in patients with very poor prognosis did not shorten the time-to-death. These findings may be useful for goals of care discussions., Competing Interests: The authors have declared that no competing interests exist.

Background and Objectives: Little is known about the pharmacokinetics of phenobarbital in terminally ill cancer patients. We investigated whether phenobarbital clearance alters depending on the length of survival., Methods: We retrospectively reviewed the clinical, laboratory, and therapeutic drug monitoring (TDM) records of patients who received parenteral or oral phenobarbital for 21 consecutive days or longer between 2000 and 2016. Patients were divided into non-cancer and cancer groups. Cancer patients were further stratified according to the survival interval after TDM: those who survived > 3 months were classified as long-surviving and the remainders short-surviving cancer patients. Phenobarbital clearance (CL PB ) was calculated at steady state. Multiple comparisons of median CL PB were conducted among the three groups., Results: Data were collected from 44 non-cancer patients and 34 cancer patients comprising 24 long-surviving and 10 short-surviving cancer patients. Among 10 short-surviving cancer patients, 4 had hepatic metastasis. Median CL PB (range) in short-surviving cancer patients [0.076 (0.057‒0.114) L/kg/day] was significantly (p < 0.05) lower than that in non-cancer patients [0.105 (0.060‒0.226) L/kg/day] and in long-surviving cancer patients [0.100 (0.082‒0.149) L/kg/day]., Conclusion: Terminally ill patients with advanced cancer may have reduced CL PB , thereby TDM is recommended for these patients particularly near the end of life.

Patient-centered care is valued by health care professionals working in palliative care settings. However, studies have revealed the difficulty of adopting patient-centered care in daily practice and of sharing its meaning within the interdisciplinary team. The aim of this study was to report the process of transforming end-of-life care by implementing a patient-centered model of care in an Italian hospice. An action research process was conducted between June 2012 and June 2014. The following phases were performed: (a) "looking" phase: the diagnosis was established by collecting data through semistructured interviews in the field study and through the administration of the Frommelt Attitude Toward the Care of the Dying Scale Form B-Italian Version; (b) "thinking" phase: staff members, guided by a research team, redesigned practice by identifying priorities in improvements and actions through multiprofessional focus groups; (c) "acting" phase: actions identified in the previous phase were implemented; and (d) "relooking" phase: the same data collection processes used in the looking phase were applied to evaluate the outcomes achieved. Three areas of improvement have been established: (1) symptoms were intensively audited through patient self-reports by using validated tools; (2) patients' family needs were also regularly collected, documented in clinical records, and addressed; (3) patients' family members were involved in the plan of care through support and education. Inpatient hospice health carers in this study were aware of the concept of patient-centered care. However, its actual implementation was lacking. An action research approach helped them to implement expected changes.

Background: making informed decisions about cancer care provision for older cancer patients can be challenging and complex. Evidence suggests cancer care varies by age, however the relationship between age and care experiences from diagnosis to death for cancer patients within the UK has not previously been examined in detail., Patients and Methods: retrospective cohort linking cancer registry and secondary care data for 13,499 adult cancer patients who died between January 2005 and December 2011. Cancer therapies (chemotherapy, radiotherapy, surgery), hospital palliative care referrals, hospital admissions and place of death were compared between age groups using multivariable regression models. Trends in cancer care over time, overall and within age groups were also assessed., Results: compared with adult patients under 60 years, patients aged 80 years and over were less likely to receive chemotherapy, radiotherapy, a hospital palliative care referral; or be admitted to hospital but were more likely to die in a care home. Overall, the percentage of patients receiving chemotherapy, surgery, hospital palliative care referrals and hospital admissions have increased while deaths in hospital have decreased. Deaths at home have increased for patients aged 80 years and over., Conclusion: older patients are less likely to receive cancer therapies or hospital palliative care before death. Further research is needed to identify the extent to which these results reflect unmet need.

Background: Elderly individuals are increasingly represented among patients with implantable cardioverter defibrillators (ICD), but data describing life with an ICD are scarse among octo- and nonagenarians. Moreover, few studies have reported those elderly patients' perspective on timly discussions concerning what shock deactivation involves, preferences on battery replacement, and their attitudes about turning off the ICD nearing end-of-life. Consequently, the aim of the study was to describe outlooks on life and death in octo- and nonagenarian ICD-recipients., Methods: Participants were identified via the Swedish Pacemaker- and ICD-registry, with 229 octo- and nonagenarians (82.0 ± 2.2 years, 12% female) completing the survey on one occasion. The survey involved questions on health and psychological measures, as well as on experiences, attitudes and knowledge of end-of-life issues in relation to the ICD., Results: The majority (53%) reported their existing health as being good/very good and rated their health status as 67 ± 18 on the EuroQol Visual Analog Scale. A total of 34% had experienced shock(s), 11% suffered from symptoms of depression, 15% had anxiety, and 26% reported concerns related to their ICD. About one third (34%) had discussed their illness trajectory with their physician, with those octo- and nonagenarians being more decisive about a future deactivation (67% vs. 43%, p < .01). A minority (13%) had discussed what turning off shocks would involve with their physician, and just 7% had told their family their wishes about a possible deactivation in the future. The majority desired battery replacement even if they had reached a very advanced age when one was needed (69%), or were seriously ill with a life-threatening disease (55%). When asked about deactivation in an anticipated terminal illness, about one third (34%) stated that they wanted to keep the shocks in the ICD during these circumstances. About one-fourth of the octo- and nonagenarians had insufficient knowledge regarding the ethical aspects, function of the ICD, and practical consequences of withdrawing the ICD treatment in the end-of-life., Conclusions: Increasing numbers of elderly persons receive an ICD and geriatric care must involve assessments of life expectancy as well as the patient's knowledge and attitudes in relation to generator changes and deactivation.

Background: the last year of life for many older people is associated with high symptom burden and frequent hospitalizations. Hospital physicians have an opportunity to prioritize essential medications and deprescribe potentially futile medications., Objective: to measure medication consumption during hospitalization in the last year of life and the prevalence of potentially inappropriate medications (PIMs) at hospital discharge., Design: retrospective chart review., Setting: acute hospital., Subjects: ≥65 years, hospitalized in the last year of life., Methods: medication consumption was determined by examining hospital Medication Administration Records. PIMs were defined using STOPPFrail deprescribing criteria., Results: the study included 410 patients. The mean age of participants was 80.8, 49.3% were female, and 63.7% were severely frail. The median number of days spent in hospital in the last year of life was 32 (interquartile range 15-59). During all hospitalizations, the mean number of individual medications consumed was 23.8 (standard deviation 10.1). One-in-six patients consumed 35 or more medications in their last year. Over 80% of patients were prescribed at least one PIM at discharge and 33% had ≥3 PIMs. Lipid-lowering medications, proton pump inhibitors, anti-psychotics and calcium supplements accounted for 59% of all PIMs. Full implementation of STOPPFrail recommendations would have resulted in one-in-four long-term medications being discontinued., Conclusion: high levels of medication consumption in the last year of life not only reflect high symptom burden experienced by patients but also continued prescribing of futile medications. Physicians assisted by the STOPPFrail tool can reduce medication burden for older people approaching end of life.

Background: Close to half of all deaths in Norway occur in nursing homes, which signals a need for good communication on end-of-life care. Advance care planning (ACP) is one means to that end, but in Norwegian nursing homes, ACP is not common. This paper describes the protocol of a project evaluating an ACP-intervention in Norwegian nursing homes. The aims of this research project were to promote the possibility for conversations about the end of life with patients and relatives; promote patient autonomy; create a better foundation for important decisions in the case of medical emergencies and at the end of life; and gain experiences in order to find out what characterizes good ACP and good implementation strategies., Methods/design: This study was a mixed method study including a cluster-randomized clinical trial. Eight nursing home wards or "clusters" were pair-matched, and one ward from each pair was randomly selected for a 12-month intervention. The intervention consisted of implementing an ACP-guideline. Implementation strategies were training and supervision of project teams and staff in using the guideline, written information to patients and next of kin, and information meetings with nursing home staff. The project was evaluated using both quantitative and qualitative data, and both outcome and process evaluation. Quantitative data included patient chart reviews of ACP, diagnoses, patient preferences for decision-making and treatment, values and wishes that are more general, documented life-prolonging treatment and hospitalizations, and concordance between patient wishes and treatment. The primary outcome was documented ACP. Qualitative data included observations of conversations, interviews with patients, next of kin and health care personnel, logs from project coordinators and conversations, and transcripts from meetings with project teams in the intervention group., Discussion: This project attempted to increase the quality and use of ACP in Norwegian nursing homes (NH). A mixed methods approach, inclusion of patients with dementia, attempts to involve, as many patients as possible, and a sustainable implementation plan adapted to real life in nursing homes were strengths of the project.

Background: Palliative chemotherapy should be used with caution when attempting to alleviate symptoms in patients with end-stage cancer. However, palliative chemotherapy continues to be utilized in cancer patients during their last stages of life. In this study, we analyzed the pattern of chemotherapy administered during the last 6 months of life in patients with end-stage gynecologic cancer who were treated with active palliative chemotherapy for the past 10 years., Method: We retrospectively analyzed the data for patients with gynecologic cancer who died after undergoing active palliative chemotherapy without receiving hospice management at Asan Medical Center from 2006 to 2015. Patients were divided into two groups: those who died between 2006 and 2010, and those who died between 2011 and 2015. Based on the electronic medical records, the demographic and baseline characteristics of the patients, hospital admission during the last 6 months, invasive procedures, palliative chemotherapy patterns, and the time of the last chemotherapy session were confirmed., Results: A total of 193 patients with gynecologic cancer were eligible for this study. 92 patients died during 2006 to 2010, and 101 patients died during 2011 to 2015. The mean frequency of admission during the last 6 months was 5.12 for those who died in 2006-2010 and 6.06 for those who died during 2011-2015 (p = 0.003); similarly, the mean frequency of palliative chemotherapy during the last 6 months was 3.84 (2006-2010) vs. 4.93 times (2011-2015; p < 0.001). The proportion of patients undergoing invasive procedures during the last 3 months was 41.3% (2005-2010) vs. 56.4% (2011-2015; p = 0.044)., Conclusions: The frequency of palliative chemotherapy and the rate of invasive procedures have increased in patients with end-stage gynecologic cancer who were treated aggressively without hospice management over 2011-2015 when compared to 2006-2010, along with an increase in the mean frequency of admission during the last 6 months at our institution. Gynecologic oncologists need to evaluate whether active palliative chemotherapy is beneficial to patients at the end-of-life stage, and if not helpful, should communicate with the patients and caregivers about when the palliative chemotherapy should be discontinued.

Patients with advanced myeloma experience a high symptom burden particularly near the end of life, making timely hospice use crucial. Little is known about the quality and determinants of end-of-life care for this population, including whether potential increases in hospice use are also accompanied by "late" enrollment (≤ 3 days before death). Using the Surveillance, Epidemiology, and End-Results-Medicare database, we identified patients ≥ 65 years diagnosed with myeloma between 2000 and 2013 who died by December 31, 2013. We assessed prevalence and trends in hospice use, including late enrollment. We also examined six established measures of potentially aggressive medical care at the end of life. Independent predictors of late hospice enrollment and aggressive end-of-life care were assessed using multivariable logistic regression analyses. Of 12,686 myeloma decedents, 48.2% enrolled in hospice. Among the 6111 who enrolled, 17.2% spent ≤ 3 days there. There was a significant trend in increasing hospice use, from 28.5% in 2000 to 56.5% by 2013 ( P trend <0.001), no significant rise in late enrollment (12.2% in 2000 to 16.3% in 2013, P trend =0.19), and a slight decrease in aggressive end-of-life care (59.2% in 2000 to 56.7% in 2013, P trend =0.01). Patients who were transfusion-dependent, on dialysis, or survived for less than one year were more likely to enroll late in hospice and experience aggressive medical care at the end of life. Gains in hospice use for myeloma decedents were not accompanied by increases in late enrollment or aggressive medical care. These findings suggest meaningful improvements in end-of-life care for this population., (Copyright© 2018 Ferrata Storti Foundation.)

Give the due value to the end of life: the systematic underfunding of specialised palliative care in the Swiss DRG system Abstract. Palliative care is an integral part of modern medicine, improving quality of life, treatment satisfaction, and reducing the costs of care in severe disease. Patients' access should be early, regardless of age, diagnosis and setting, when incurable or advanced disease has been diagnosed. The public expenditure for specialised palliative care units in hospitals can be seen as yardstick for an appropriate palliative care supply, but in Switzerland only a mere fraction of revenues is dedicated to the palliative care units. Every year, 66'000 patients die in Switzerland, 38 % of them in a hospital. Health care costs for the last year of life account for 1.9 billion Swiss francs, but palliative care units receive only estimated 51 million Swiss francs per year. Reasons are a too little number of palliative care units, a systemic underfunding of their services and a fragmentary supply chain for severely ill or dying patients. This leads to ethically conflicting situations for clinicians. They have to deal with shortage of supply and, due to economic reasons, are forced to transfer severely ill or dying patients into inadequate settings. Based on international recommendations, Switzerland is in need of further 500 beds for specialised palliative care (actually 335), and at least 11'000 patients per year need access to a specialised palliative care service (actually about 3'500). Under the actual tariffing system, units for palliative care in hospitals are endangered in their existence. Corrections of the remuneration system are urgently warranted. On the long run, a national legal basis should be elaborated to safeguard adequate palliative care supply for all patients in need and as a base for monitoring, formation and research in palliative care.

Background: In the last decade, the number of patients continuously deeply sedated until death increased up to fourfold. The reasons for this increase remain unclear., Objective: To identify socio-demographic and clinical characteristics of sedated patients, and concurrent possibly life-shortening medical end-of-life decisions., Design: Cross-sectional death certificate study in German-speaking Switzerland in 2001 and 2013., Participants: Non-sudden and expected deaths (2001: N = 2281, 2013: N = 2256) based on a random sample of death certificates and followed by an anonymous survey on end-of-life practices among attending physicians., Main Measures: Physicians' reported proportion of patients continuously deeply sedated until death, socio-demographic and clinical characteristics, and possibly life-shortening medical end-of life decisions., Key Results: In 2013, physicians sedated four times more patients continuously until death (6.7% in 2001; 24.5.5% in 2013). Four out of five sedated patients died in hospitals, outside specialized palliative care units, or in nursing homes. Sedation was more likely among patients younger than 65 (odds ratio 2.24, 95% CI 1.6 to 3.2) and those dying in specialized palliative care (OR 2.2, 95% CI 1.3 to 3.8) or in hospitals (1.7, 95% CI 1.3 to 2.3). Forgoing life-prolonging treatment with the explicit intention to hasten or not to postpone death combined with intensified alleviation of symptoms was very strongly associated with continuous deep sedation (OR 6.8, 95% CI 4.7 to 9.8)., Conclusions: In Swiss clinical practice, continuously deeply sedated patients predominantly died outside specialized palliative care. The increasing trend over time appears to be related to changes in medical end-of-life practice rather than to patient's clinical characteristics.

Aim: Little is known regarding the extent to which dying patients with chronic obstructive pulmonary disease (COPD) receive life-sustaining procedures and palliative care in US hospitals. We examined temporal trends and the impact of palliative care on the use of life-sustaining procedures in this population., Materials and Methods: A retrospective nationwide cohort analysis was performed using weighted National Inpatient Sample (NIS) data obtained from 2010 to 2014. Decedents ≥18 years of age at the time of death and with a principal diagnosis of COPD were included. We examined the receipt of life-sustaining procedures, defined as1 ventilation (intubation, mechanical ventilation, and noninvasive ventilation),2 vasopressor use (infusion and intravascular monitoring),3 nutrition (enteral and parenteral infusion of concentrated nutrition),4 dialysis, and5 cardiopulmonary resuscitation as well as palliative care consultation and do not resuscitate (DNR). We used compound annual growth rates (CAGRs) and the Rao-Scott correction of the χ2 statistic to determine the statistical significance of temporal trends of life-sustaining procedures, palliative care utilization, and DNR status., Results: Among 37 312 324 hospitalizations, 38 425 patients were examined. The CAGRs of life-sustaining procedures were 6.61% and -9.73% among patients who underwent multiple procedures and patients who did not undergo any procedure, respectively (both P < .001). The CAGRs of palliative consultation and DNR were 5.25% and 36.62%, respectively (both P < .001)., Conclusions: Among adults with COPD dying in US hospitals between 2010 and 2014, the utilization of life-sustaining procedures, palliative care, and DNR status increased.

Background: Little is known about patterns of end-of-life care for patients with advanced kidney disease not treated with maintenance dialysis., Study Design: Case series., Setting & Participants: A sample of 14,071 patients with sustained estimated glomerular filtration rates < 15mL/min/1.73m 2 treated in the US Veterans Affairs health care system who died during 2000 to 2011. Before death, 12,756 of these patients had been treated with dialysis, 503 had been discussing and/or preparing for dialysis therapy, and for 812, there had been a decision not to pursue dialysis therapy., Outcomes: Hospitalization and receipt of an intensive procedure during the final month of life, in-hospital death, and palliative care consultation and hospice enrollment before death., Results: Compared with decedents treated with dialysis, those for whom a decision not to pursue dialysis therapy had been made were less often hospitalized (57.3% vs 76.8%; OR, 0.40 [95% CI, 0.34-0.46]), less often the recipient of an intensive procedure (3.5% vs 24.6%; OR, 0.15 [95% CI, 0.10-0.22]), more often the recipient of a palliative care consultation (52.6% vs 21.6%; OR, 4.19 [95% CI, 3.58-4.90]), more often used hospice services (38.7% vs 18.2%; OR, 3.32 [95% CI, 2.83-3.89]), and died less frequently in a hospital (41.4% vs 57.3%; OR, 0.78 [95% CI, 0.74-0.82]). Hospitalization (55.5%; OR, 0.39 [95% CI, 0.32-0.46]), receipt of an intensive procedure (13.7%; OR, 0.60 [95% CI, 0.46-0.77]), and in-hospital death (39.0%; OR, 0.47 [95% CI, 0.39-0.56]) were also less common among decedents who had been discussing and/or preparing for dialysis therapy, but their use of palliative care and hospice services was similar., Limitations: Findings may not be generalizable to groups not well represented in the Veterans Affairs health care system., Conclusions: Among decedents, patients not treated with dialysis before death received less intensive patterns of end-of-life care than those treated with dialysis. Decedents for whom there had been a decision not to pursue dialysis therapy before death were more likely to receive palliative care and hospice., (Published by Elsevier Inc.)

The aim of this study was to explore the experiences of nurses providing end-of-life care to patients with hematologic malignancies, in a hematology oncology setting, in an acute general hospital. A qualitative hermeneutic phenomenological design was used, and 2 sets of semistructured interviews were conducted with 5 female nurses. The transcribed texts were analyzed using Interpretative Phenomenological Analysis. Two main themes emerged: "battling against medical futility" and "struggling with the emotional burden of care." Nurses perceived that the transfer of these patients at end of life to intensive critical care settings, coupled with the particularly aggressive treatments and corresponding symptom burden, prevented them from experiencing a dignified death. Consequently, nurses struggled with a gamut of emotions that included feelings of helplessness, distress, and compassion fatigue. Providing nursing care at end of life was perceived to be particularly challenging with the younger patients or with those who reminded them of family members. The findings highlight the unique challenges experienced by these nurses and the need to support them in their work with patients having hematologic malignancies at end of life within a well-resourced setting.

Background: There is little research on number of planned home deaths. We need information about factors associated with home deaths, but also differences between planned and unplanned home deaths to improve end-of-life-care at home and make home deaths a feasible alternative. Our aim was to investigate factors associated with home deaths, estimate number of potentially planned home deaths, and differences in individual characteristics between people with and without a potentially planned home death., Methods: A cross-sectional study of all decedents in Norway in 2012 and 2013, using data from the Norwegian Cause of Death Registry and National registry for statistics on municipal health and care services. We defined planned home death by an indirect algorithm-based method using domiciliary care and diagnosis. We used logistic regressions models to evaluate factors associated with home death compared with nursing home and hospital; and to compare unplanned home deaths and potentially planned home deaths., Results: Among 80,908 deaths, 12,156 (15.0%) were home deaths. A home death was most frequent in 'Circulatory diseases' and 'Cancer', and associated with male sex, younger age, receiving domiciliary care and living alone. Only 2.3% of home deaths were from 'Dementia'. In total, 41.9% of home deaths and 6.3% of all deaths were potentially planned home deaths. Potentially planned home deaths were associated with higher age, but declined in ages above 80 years for people who had municipal care. Living together with someone was associated with more potentially planned home deaths for people with municipal care., Conclusion: There are few home deaths in Norway. Our estimations indicate that even fewer people than anticipated have a potentially planned home death.

Context: Stroke is the second leading cause of death and the primary cause of disability worldwide. It is uncertain what care patients with stroke receive in their end of life and what trends in care are in recent years., Objectives: The objective of this study was to investigate the changes in the use of intensive and supportive procedures for Taiwanese patients with stroke in their last month of life during 2000-2010., Methods: Analysis of claims data of 55,930 patients with stroke obtained from the National Health Insurance Research Database was performed to investigate the changes in the use of intensive and supportive procedures for Taiwanese patients with stroke in their last month of life during 2000-2010., Results: Over the whole study period, 25.4% of patients with stroke were admitted to intensive care units in their last month of life. The percentages of patients receiving mechanical ventilation (77.4%-67.9%), cardiopulmonary resuscitation (53.8%-35.8%), and inotropic agents (73.5%-64.3%) decreased over time. The percentages of patients receiving artificial hydration and nutrition (65.9%-73.3%) and sedative or analgesic agents (34.7%-38.6%) increased over time. Patients under 85 years old were more likely to be admitted to intensive care units. Men were more likely to receive mechanical ventilation and cardiopulmonary resuscitation than women., Conclusion: Over time, the use of supportive procedures increased, and the use of intensive procedures decreased in patients with stroke in the last month of life. This study highlights a need for research, guidelines, and training in how to provide palliative care for end-stage patients with stroke., (Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)