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Hospice social workers face many challenges in attempts to replicate or supplement the holistic support and unique services hospice provides for individuals discharged alive. This discontinuity in care can impact the types of supports needed by individuals and caregivers, which may or may not be accessible within their community. Patients and families who have access to community-based palliative care programs following a discharge generally tend to navigate the process with fewer challenges. This qualitative study (N = 24) explored both the challenges of the live discharge process and the opportunities within social work practice in the US. Results from this study emphasize the need for a framework to better approach a live discharge to ensure appropriate supports are accessible for all patients and caregivers. Specifically, results highlight both the concrete and psychosocial challenges in live discharges as a result of tension between current eligibility requirements and individual feelings and needs. Social workers also provided suggestions to improve the live discharge process, including attention to communication and preparation. This paper outlines specific challenges of live discharge from hospice, a framework for understanding presented challenges, and implications for policy and practice. [ABSTRACT FROM AUTHOR]

Greater attention is being paid to issues surrounding end-of-life care for aging adults with developmental disabilities. The purpose of this qualitative study was to explore the end-of-life experiences of two aging adults with developmental disabilities and life-limiting serious illnesses who received care in settings in the United States. Using a comparative case study design, data from three sources (records, staff, surrogates) were collected sequentially and triangulated via within and cross-case analyses. Although the setting and design limit the generalizability of these findings, the feasibility of delivering high quality care to adults with developmental disabilities as they age and experience terminal illnesses is supported. Insights are presented regarding how nurses can address barriers by adapting policies and practices to accommodate the distinct needs that arise as people with developmental disabilities age, become seriously ill, and reach life's end. [ABSTRACT FROM AUTHOR]

Given two million deaths annually in the U. S., social work education and training have been cited as woefully inadequate in end-of-life care. In response, two of the authors developed two post-Masters programs in end-of-life care for social work. This paper describes their curricula and the methods used to evaluate both programs, including measurements of the participants' self-efficacy before and after the programs. The analysis of evaluative data from the classroom and first-year field experiences of each program shows that participants increased their levels of skill, knowledge, values, and self-efficacy. [ABSTRACT FROM AUTHOR]

Medicare does not pay for beneficiaries to undergo advance care planning (ACP). In this paper, I argue why this failure is economically unsound and unethical. I begin with an analysis of the data regarding current Medicare end-of-life expenditures. Research on these data demonstrates a failure of high-intensity spending to improve end-of-life outcomes. These data further show that ACP can effectively control end-of-life care costs since most persons who undergo ACP opt for palliative-based treatment at the end of life, as opposed to high-intensity medical treatment. I then discuss how current regional variations in Medicare spending on end-of-life care and the failure of Medicare to offer an ACP benefit to its beneficiaries is both economically unjust and appears to violate several tenets of medical ethics. Reliance on the Patient Self-Determination Act of 1990 is also refuted as an ethical solution to the raised concerns about Medicare's failure to fund an ACP benefit. I conclude by noting that the ethical force behind why Medicare should fund an ACP benefit is rooted in its conceptual goals as a means to align patient treatment preferences with the medical care they receive, and not simply the ability of ACP to help control end-of-life care costs. [ABSTRACT FROM AUTHOR]

Persons with intellectual and developmental disabilities (I/DD) face barriers and disparities at end of life. Among these barriers are limited educational opportunities and a paucity of targeted training materials on palliative care for staff who provide their day-to-day care. This paper reports on a three-phase project undertaken to develop, implement, and evaluate a palliative care curriculum and educational program that is responsive to the unique learning needs of staff providing services and supports for individuals with I/DD living in long-term care settings. Participants' ratings of their levels of preparation and confidence to provide palliative care improved from pretraining to posttraining. Posttraining use of materials and practice changes in palliative care occurred. When training is developed in partnership with the staff who will use these training resources, it has the potential to sustain its use and to alter the care practices to address the palliative care needs of persons with I/DD. [ABSTRACT FROM AUTHOR]

This study examined cultural differences in advance care planning (ACP) and various strategies that social workers use to initiate conversations on ACP. We conducted qualitative interviews with 12 social workers in South Korea and the US and a thematic content analysis of the transcribed data. Our findings show that different cultural norms and generational viewpoints surrounding death and health-related decision-making influence how people prepare for end-of-life care (EOLC). Whereas principles of self-determination and autonomy guide ACP practices in the US, decisions regarding EOLC are more often made in consultation with family members in Korean and Korean-American communities. Nevertheless, social workers in both countries identified relationship-building, empowerment, and individualized approaches as common strategies in initiating discussions on ACP. [ABSTRACT FROM AUTHOR]

Introduction: Hospital chaplains aid patients confronting challenges related to palliative and end-of-life care, but relatively little is known about how chaplains view and respond to such needs among Muslim patients, and how well. Methods: Telephone qualitative interviews of ~ 1 h each were conducted with 23 chaplains and analyzed. Results: Both Muslim and non-Muslim chaplains raised issues concerning Islam among chaplains, doctors and patients, particularly challenges and misunderstandings between non-Muslim providers and Muslim patients, especially at the end-of-life, often due to a lack of knowledge of Islam, and misunderstanding and differences in perspectives. Due to broader societal Islamophobia, Muslim patients may fear or face discrimination, and thus not disclose their religion in the hospital. Confusion can arise among Muslim patients and families about what their faith permits regarding end-of-life care and pain management, and how to interpret and apply their religious beliefs in hospitals. Muslims hail from different countries, but providers may not fully grasp how these patients' cultural practices may also vary. Chaplains can help address these challenges, playing key roles in mediating tensions and working to counteract Muslim patients' fears, and express support. Yet many Muslim immigrants don't know what "chaplaincy" is and/or prefer a chaplain of their own faith. Muslim chaplains can play vital roles, having expertise that can heighten trust, and educating non-Muslim colleagues, providing in-depth understanding of Islam (e.g., highlighting how Islam is related to Judaism and Christianity) and correcting misconceptions among colleagues. Hospitals without a Muslim chaplain can draw on local community imams. Conclusions: These data highlight how mutual sets of misunderstandings, especially concerning patients' and families' decisions about end-of-life care and pain management, can emerge among Muslim patients and non-Muslim staff that chaplains can help mediate. Non-Muslim chaplains and providers should seek to learn more about Islam. Muslim patients and families may also benefit from enhanced education and awareness of chaplains' availability and scope, and of pain management and end-of-life options. These data thus have several critical implications for future practice, education, and research. [ABSTRACT FROM AUTHOR]

At the end of life, individuals may re-engage with earlier life trauma as they reflect on life experiences and confront their mortality. As such, posttraumatic stress disorder (PTSD) symptoms at the end of life may worsen the quality of death experience. This is a concern for military veterans, who tend to have more trauma exposures and higher rates of PTSD, and particularly for veterans receiving care in rural areas where access to PTSD specialty services is limited. To better understand this issue, we conducted 10 focus groups with clinicians serving veterans in rural communities across five U.S. states. The aims of this project were to evaluate: (1) do hospice and palliative care providers/staff observe PTSD symptoms in veterans at the end of life? (2) if so, how are symptoms similar to and different from existing DSM-5 criteria for PTSD? We used qualitative content analysis with mixed deductive and inductive approaches to code 151 anonymized statements. Analyses found descriptions of PTSD symptoms aligned broadly with existing diagnostic nomenclature, but descriptions revealed specific presentations relevant to the end of life setting such as resistance to care, agitation, restlessness, and effects of delirium. In addition, some veterans expressed pride in service and openness to discussing military experiences. Further, clinicians noted that PTSD symptoms were relevant to family dynamics. Future research should further characterize these symptom differences through direct patient assessment and develop resources to improve quality of death experience for veterans with PTSD symptoms. [ABSTRACT FROM AUTHOR]

Background: Indigenous peoples in developed countries have reduced life expectancies, particularly from chronic diseases. The lack of access to and take up of palliative care services of Indigenous peoples is an ongoing concern. Objectives: To examine and learn from published studies on provision of culturally safe palliative care service delivery to Indigenous people in Australia, New Zealand (NZ), Canada and the United States of America (USA); and to compare Indigenous peoples' preferences, needs, opportunities and barriers to palliative care. Methods: A comprehensive search of multiple databases was undertaken. Articles were included if they were published in English from 2000 onwards and related to palliative care service delivery for Indigenous populations; papers could use quantitative or qualitative approaches. Common themes were identified using thematic synthesis. Studies were evaluated using Daly's hierarchy of evidence-for-practice in qualitative research. Results: Of 522 articles screened, 39 were eligible for inclusion. Despite diversity in Indigenous peoples' experiences across countries, some commonalities were noted in the preferences for palliative care of Indigenous people: to die close to or at home; involvement of family; and the integration of cultural practices. Barriers identified included inaccessibility, affordability, lack of awareness of services, perceptions of palliative care, and inappropriate services. Identified models attempted to address these gaps by adopting the following strategies: community engagement and ownership; flexibility in approach; continuing education and training; a whole-of-service approach; and local partnerships among multiple agencies. Better engagement with Indigenous clients, an increase in number of palliative care patients, improved outcomes, and understanding about palliative care by patients and their families were identified as positive achievements. Conclusions: The results provide a comprehensive overview of identified effective practices with regards to palliative care delivered to Indigenous populations to guide future program developments in this field. Further research is required to explore the palliative care needs and experiences of Indigenous people living in urban areas. [ABSTRACT FROM AUTHOR]

Because of the severity of illness, the intensive care unit (ICU) is a setting where death is common. Approximately 20% of all deaths in the United States occur in ICUs. Although optimal palliative care of out-patients may prevent many ICU admissions, the ICU will always remain an important setting for end-of-life care because of the severity of illness of patients in the ICU. This review provides an overview of the principles and practice of integrating palliative and critical care, with a focus on 4 specific areas: the role of palliative care in the ICU; symptom assessment and management; communication with patients and family members; and interdisciplinary communication and collaboration. This review also describes the development and evaluation of a new intervention for hospitals and individual ICUs: Integrating Palliative and Critical Care (IPACC). The goal of the IPACC intervention and this paper is to teach ICU clinicians basic palliative care skills and the language of palliative care, and to encourage all ICU clinicians to prioritize palliative care as one of the important things that we do in the ICU. [ABSTRACT FROM AUTHOR]

This article describes leadership efforts within social work to promote, enhance, and shape the future of social work practice, education, and research in end-of-life and palliative care. The background and outcomes of the Project on Death in America, Open Society Institute's Social Work Leadership Development Award Program, and the 2002 Social Work Leadership Summit on End-of-Life and Palliative Care are reviewed. [ABSTRACT FROM AUTHOR]

Background: Children, adolescents, and young adults with hematologic malignancies tend to receive high‐intensity end‐of‐life care (HI‐EOLC), but sociodemographic and hospital‐based predictors of HI‐EOLC remain unclear. Methods: The authors conducted a population‐based, retrospective cohort study with the Premier Healthcare Database. They identified individuals with hematologic malignancies who were 0 to 39 years old at death and died between 2010 and 2017. HI‐EOLC was defined as experiencing 2 or more of the following: cardiopulmonary resuscitation, intravenous chemotherapy, hemodialysis, mechanical ventilation, tracheostomy placement, or an emergency department visit within the last 30 days of life and death in the intensive care unit. Multivariable logistic regression models were constructed to identify patient sociodemographic and hospital characteristics associated with HI‐EOLC. Results: Among 1454 decedents, more than half (55%) experienced HI‐EOLC. In multivariable models, patients treated in medium (adjusted odds ratio [aOR], 1.63; 95% confidence interval [CI], 1.07‐2.50) or large hospitals (aOR, 2.21; 95% CI, 1.45‐3.39), insured by Medicaid (aOR, 1.40 ; 95% CI, 1.09‐2.06), or receiving cancer‐directed treatment in the Northeast (aOR, 1.50; 95% CI, 1.05‐2.15) were more likely to receive HI‐EOLC. Conclusions: A majority of children, adolescents, and young adults with hematologic malignancies experienced HI‐EOLC, and the likelihood of HI‐EOLC was influenced by the hospital size, type of insurance, and geographic region. Further research is needed to determine how to mitigate these risks. Many children, adolescents, and young adults with hematologic malignancies experience intense end‐of‐life care across the United States. Predictors for more intense care may include 1) receiving care in larger hospitals, 2) having Medicaid insurance, and 3) receiving care in the Northeast. [ABSTRACT FROM AUTHOR]

Mexican Americans (MAs), 1 of 10 subgroups of Latinos, are the largest and fastest growing Latino subgroup in the United States; yet, their access to end-of-life (EOL) care using hospice services is low. An investigation was needed into extant research-based knowledge about factors influencing EOL care decisions among MAs to guide health-care professionals in assisting MAs to make timely, acceptable, and satisfactory EOL care decisions. To determine whether gender was an influence on EOL decision-making among older MAs, CINAHL and PubMed were searched for articles published between 1994 and 2018. Relevant sources were also identified through the reference lists of review articles. Reports were included if they were written in English, involved participants aged 50 years and older who identified themselves as MA, and data derived directly from participants. Reports in which MAs were not equally represented in the sample, large databases, and instrumentation development and testing articles were excluded. Of the 345 unduplicated articles identified in our electronic search and the 47 identified through review articles, 22 met the inclusion criteria. Content analysis was conducted using a priori codes from the Ethno-Cultural Gerontological Nursing Model (ECGNM). Only 8 (36%) of the 22 articles reported on MA older adults' gendered experiences related to EOL decision-making. Results indicate an association between gender and EOL decision-making. As the older MA population grows, tackling disparities in EOL services use requires attention to how culture and gender influence EOL decision-making and care. [ABSTRACT FROM AUTHOR]

It is important for health-care providers to be comfortable in providing end-of-life (EOL) care to critically ill patients and realizing when continuing aggressive measures would be futile. Therefore, there is a need to understand health-care providers' selfperceived skills and barriers to providing optimum EOL care. A total of 660 health-care providers from medicine and surgery departments were asked via e-mail to complete an anonymous survey assessing their self-reported EOL care competencies, of which 238 responses were received. Our study identified several deficiencies in the self-reported EOL care competencies among health-care providers. Around 34% of the participants either disagreed (strongly disagree or disagree) or were neutral when asked whether they feel well prepared for delivering EOL care. Around 30% of the participants did not agree (agree and strongly agree) that they were well prepared to determine when to refer patients to hospice. 51% of the participants, did not agree (agree and strongly agree) that clear and accurate information is delivered by team members to patients/family. The most common barrier to providing EOL care in the intensive care unit was family not accepting the patient's poor prognosis. Nursing staff (registered nurse) had higher knowledge and attitudes mean competency scores than the medical staff. Attending physicians reported stronger knowledge competencies when compared to residents and fellows. More than half of the participants denied having received any previous training in EOL care. 82% of the participants agreed that training should be mandatory in this field. Most of the participants reported that the palliative care team is involved in EOL care when the patient is believed to be terminally ill. Apart from a need for a stronger training in the field of EOL care for health-care providers, the overall policies surrounding EOL and palliative care delivery require further evaluation and improvement to promote better outcomes in caring patients at the EOL. [ABSTRACT FROM AUTHOR]

Racial disparities in the end-of-life treatment of patients are a well observed fact of the U.S. healthcare system. Less is known about how the physicians treating patients at the end-of-life influence the care received. Social networks have been widely used to study interactions with the healthcare system using physician patient-sharing networks. In this paper, we propose an extension of the dissimilarity index (DI), classically used to study geographic racial segregation, to study differences in patient care patterns in the healthcare system. Using the proposed measure, we quantify the unevenness of referrals (sharing) by physicians in a given region by their patients' race and how this relates to the treatments they receive at the end-of-life in a cohort of Medicare fee-for-service patients with Alzheimer's disease and related dementias. We apply the measure nationwide to physician patient-sharing networks, and in a sub-study comparing four regions with similar racial distribution, Washington, DC, Greenville, NC, Columbus, GA, and Meridian, MS. We show that among regions with similar racial distribution, a large dissimilarity index in a region (Washington, DC DI = 0.86 vs. Meridian, MS DI = 0.55), which corresponds to more distinct referral networks for black and white patients by the same physician, is correlated with black patients with Alzheimer's disease and related dementias receiving more aggressive care at the end-of-life (including ICU and ventilator use), and less aggressive quality care (early hospice care). • Novel application of the dissimilarity index to social network analysis. • Considered a cohort of patients with Alzheimer's disease and related dementias. • Analyzed racial disparities in end-of-life treatment intensity. • Large dissimilarity index is associated with more intensive end-of-life treatments. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Background: Care costs rise towards the end of life. International comparison of service use, costs and care experiences can inform quality and improve access. Aim: The aim of this study was to compare health and social care costs, quality and their drivers in the last 3 months of life for older adults across countries. Null hypothesis: no difference between countries. Design: Mortality follow-back survey. Costs were calculated from carers' reported service use and unit costs. Setting: Palliative care services in England (London), Ireland (Dublin) and the United States (New York, San Francisco). Participants: Informal carers of decedents who had received palliative care participated in the study. Results: A total of 767 questionnaires were returned: 245 in England, 282 in Ireland and 240 in the United States. Mean care costs per person with cancer/non-cancer were US$37,250/US$37,376 (the United States), US$29,065/US$29,411 (Ireland), US$15,347/US$16,631 (England) and differed significantly (F = 25.79/14.27, p < 0.000). Cost distributions differed and were most homogeneous in England. In all countries, hospital care accounted for > 80% of total care costs; community care 6%–16%, palliative care 1%–15%; 10% of decedents used ~30% of total care costs. Being a high-cost user was associated with older age (>80 years), facing financial difficulties and poor experiences of home care, but not with having cancer or multimorbidity. Palliative care services consistently had the highest satisfaction. Conclusion: Poverty and poor home care drove high costs, suggesting that improving community palliative care may improve care value, especially as palliative care expenditure was low. Major diagnostic variables were not cost drivers. Care costs in the United States were high and highly variable, suggesting that high-cost low-value care may be prevalent. [ABSTRACT FROM AUTHOR]

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 (χ2(9) = 17.42, p <.042) and communications (χ2(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. [ABSTRACT FROM AUTHOR]

Background: Demographic characteristics play a role in influencing the decision to make end‐of‐life (EOL) directives among older adults living in the United States. Aims: To examine the associations between older adults' demographic characteristics (age, sex, marital status, residential site, and educational level) and their perceived importance of four self‐care actions for EOL planning, as well as their desire and ability to perform these actions. Settings: A cross‐sectional survey study of community‐dwelling adults living in the southern United States from 2015 to 2016. Participants: Community‐dwelling adults aged 65 years and older (N = 123). Methods: A self‐administered tool, the Patient Action Inventory for Self‐Care and a demographic questionnaire were used. Multiple logistic regression was performed. Results: Forty‐seven of (38.2%) participants lived in an urban community and 76 (61.8%) in a rural community. Demographic variables that were significant across the predictive models were older adults' residence, education levels, age, and marital status. Four demographic characteristics of living in rural areas, without a high school education, being 75 years or older, and married could be social determinants of EOL planning. Conclusions: Older adults may need community‐based support to address their end‐of‐life needs, especially those elders who want to remain independent in their home environment. [ABSTRACT FROM AUTHOR]

OBJECTIVES: The current evidence base regarding the effectiveness of home‐based palliative care (HomePal) on outcomes of importance to multiple stakeholders remains limited. The purpose of this study was to compare end‐of‐life care in decedents who received HomePal with two cohorts that either received hospice only (HO) or did not receive HomePal or hospice (No HomePal‐HO). DESIGN: Retrospective cohorts from an ongoing study of care transition from hospital to home. Data were collected from 2011 to 2016. SETTING: Kaiser Permanente Southern California. PARTICIPANTS: Decedents 65 and older who received HomePal (n = 7177) after a hospitalization and two comparison cohorts (HO only = 25 102; No HomePal‐HO = 22 472). MEASUREMENTS: Utilization data were extracted from administrative, clinical, and claims databases, and death data were obtained from state and national indices. Days at home was calculated as days not spent in the hospital or in a skilled nursing facility (SNF). RESULTS: Patients who received HomePal were enrolled for a median of 43 days and had comparable length of stay on hospice as patients who enrolled only in hospice (median days = 13 vs 12). Deaths at home were comparable between HomePal and HO (59% vs 60%) and were higher compared with No HomePal‐HO (16%). For patients who survived at least 6 months after HomePal admission (n = 2289), the mean number of days at home in the last 6 months of life was 163 ± 30 vs 161 ± 30 (HO) vs 149 ± 40 (No HomePal‐HO). Similar trends were also noted for the last 30 days of life, 25 ± 8 (HomePal, n = 5516), 24 ± 8 (HO), and 18 ± 11 (No HomePal‐HO); HomePal patients had a significantly lower risk of hospitalizations (relative risk [RR] = .58‐.87) and SNF stays (RR = .32‐.77) compared with both HO and No HomePal‐HO patients. CONCLUSION: Earlier comprehensive palliative care in patients' home in place of or preceding hospice is associated with fewer hospitalizations and SNF stays and more time at home in the final 6 months of life. J Am Geriatr Soc, 2019. See related editorial by Calton et al. in this issue. [ABSTRACT FROM AUTHOR]

Background: The evolving legal landscape for medical aid-in-dying (AID) in the USA raises clinical and public health challenges and concerns regarding how health care providers will accommodate AID while expanding access to high-quality end-of-life care.Objective: To describe Vermont health care providers' experiences practicing under the "Patient Choice and Control at End of Life" Act.Design: Qualitative semi-structured interviews analyzed using grounded theory.Participants: The larger study included 144 health care providers, terminally ill patients, caregivers, policy stakeholders, and other Vermont residents working in 10 out of Vermont's 14 counties. This article reports on a subset of 37 providers who had clinical experience with the law.Main Measures: Themes from interviews.Key Results: Physicians were roughly split between hospital and community-based practices. Most were women (68%) and the largest subgroup specialized in internal or family medicine (53%). Most of the nurses and social workers were women (89%) and most worked for hospice and home health agencies (61%). We identified five domains in which participants engaged with AID: (1) clinical communication and counseling; (2) the Act 39 protocol; (3) prescribing medication; (4) planning for death; and (5) professional education. How providers experienced these five domains of clinical practice depended on their practice setting and the supportive resources available.Conclusion: Health care providers' participation in AID involves clinical tasks outside of responding to patients' requests and writing prescriptions. Research to identify best practices should focus on all domains of clinical practice in order to best prepare providers. [ABSTRACT FROM AUTHOR]

Objectives: To examine associations between healthcare transitions at the end of life (EOL; late transitions) and bereaved family members' and friends' assessment of EOL quality of care (QOC). Design: National Health and Aging Trends Study (NHATS), a prospective cohort of Medicare enrollees aged 65 and older. Setting: United States, all sites of death. Participants: Family members and close friends of decedents from NHATS Rounds 2 through 6 (N=1,653; weighted 6.0 million Medicare deaths). Measurements: Multivariable logistic regression with survey weights was used to examine the association between having a late transition and reports of perceived unmet needs for symptom management, spiritual support, concerns with communication, and overall QOC. Results: Seventeen percent of decedents had a late transition. Bereaved respondents for decedents experiencing late transitions were more likely to report that the decedent was treated without respect (21.3% vs 15.6%; adjusted odds ratio (AOR)=1.59, 95% confidence interval (CI)=1.09–2.33), had more unmet needs for spiritual support (67.4% v 55.2%; AOR=1.48, 95% CI=1.03–2.13), and were more likely to report they were not kept informed about the person's condition (31.0% vs 20.9%; AOR=1.54, 95% CI=1.07–2.23). Bereaved respondents were less likely to rate QOC as excellent when there was a late transition (43.6% vs 48.2%; AOR=0.79, 95% CI=0.58–1.06). Subgroup analyses of those experiencing a transition between a nursing home and hospital (13% of all late transitions) revealed such transitions to be associated with even worse QOC. Conclusion: Transitions in the last 3 days of life are associated with more unmet needs, higher rate of concerns, and lower rating of QOC than when such late transitions are absent, especially when that transition is between a nursing home and hospital. [ABSTRACT FROM AUTHOR]

Objective: To determine between-hospital variation in interventions provided to patients with do not resuscitate (DNR) orders.Data Sources/setting: United States Agency of Healthcare Research and Quality, Healthcare Cost and Utilization Project, California State Inpatient Database.Study Design: Retrospective cohort study including hospitalized patients aged 40 and older with potential indications for invasive treatments: in-hospital cardiac arrest (indication for CPR), acute respiratory failure (mechanical ventilation), acute renal failure (hemodialysis), septic shock (central venous catheterization), and palliative care. Hierarchical logistic regression to determine associations of hospital "early" DNR rates (DNR order placed within 24 hours of admission) with utilization of invasive interventions.Data Collection/extraction Methods: California State Inpatient Database, year 2011.Principal Findings: Patients with DNR orders at high-DNR-rate hospitals were less likely to receive invasive mechanical ventilation for acute respiratory failure or hemodialysis for acute renal failure, but more likely to receive palliative care than DNR patients at low-DNR-rate hospitals. Patients without DNR orders experienced similar rates of invasive interventions regardless of hospital DNR rates.Conclusions: Hospitals vary widely in the scope of invasive or organ-supporting treatments provided to patients with DNR orders. [ABSTRACT FROM AUTHOR]

The purpose of this article is to assess current and future trends in hospice and palliative care with the objective of informing culturally appropriate best practice for social work. Concern for the intersectionality of racial, ethnic, social, and other differences in end-of-life (EOL) care is imperative given the ever growing range of diversity characteristics among the increasing aging populations in the United States. A review of literature from the current decade that is pertinent to the profession contributes to the ability of social work to consider evidence and build agreement germane to EOL practice settings. Administrative reports, government data, academic literature, professional standards, and assessment tools contribute to the profession's ability to work toward cultural competence and develop practice strategies for EOL care. The varied roles held by social workers across health care arenas provide a unique opportunity to promote cultural competence and advance best practice on all levels of work. [ABSTRACT FROM AUTHOR]

Background: Despite its importance, little is known about the prevalence of, and factors associated with, end-of-life care that is consistent with patients' wishes. Objective: To document the proportion of bereaved respondents who reported care inconsistent with patients' wishes and characterize the predictors of end-of-life care associated with inconsistent care. Design: Retrospective analysis of nationally representative survey data of persons aged >65 years. Settings/Subjects: Bereaved family members responding to the last month of life component of the National Health and Aging Trends Study. Methods/Measurements: Bereaved family members assessed treatment decisions and their consistency with patients' wishes, unmet needs, and quality of care. We examined differences between patients receiving inconsistent versus consistent care. Results: A total of 1212 family members were interviewed, representing (when weighted) 4.8 million decedents. Thirteen percent stated that care was inconsistent with decedent's wishes. Consistent care was unassociated with patient's sex, age, or race/ethnicity. Death at home was more likely to represent consistent care, and death in the hospital or nursing home was more likely to represent inconsistent care ( p = 0.052). Respondents reporting inconsistent care were more likely to rate the quality of care as fair or poor (19.1% vs. 4.8%, p < 0.001), reported more unmet needs for pain management (30.5% vs. 19.4%, p = 0.037), and reported more concerns with communication (29.8% vs. 17.0%, p = 0.003). Conclusions: One in eight respondents stated care in the last months of life was inconsistent with patients' wishes; such care was associated with worse ratings of care, pain management, and communication with clinicians. [ABSTRACT FROM AUTHOR]

Background: Music therapists in palliative and cancer care settings often use singing and vocal interventions. Although benefits for these interventions are emerging, more information is needed on what type of singing interventions are being used by credentialed music therapists, and what goal areas are being addressed.Objective: To assess music therapists' perceptions on how they use singing and vocal interventions in palliative and cancer care environments.Method: Eighty credentialed music therapists from Canada and the United States participated in this two-part convergent mixed-methods study that began with an online survey, followed by individual interviews with 50% (n = 40) of the survey participants.Results: In both palliative and cancer care, singing client-preferred music and singing for relaxation were the most frequently used interventions. In palliative care, the most commonly addressed goals were to increase self-expression, improve mood, and create a feeling of togetherness between individuals receiving palliative care and their family. In cancer care, the most commonly addressed goals were to support breathing, improve mood, and support reminiscence. Seven themes emerged from therapist interviews: containing the space, connection, soothing, identity, freeing the voice within, letting go, and honoring.Conclusions: Music therapists use singing to address the physical, emotional, social, and spiritual goals of patients, and described singing interventions as accessible and effective. Further research is recommended to examine intervention efficacy and identify factors responsible that contribute to clinical benefit. [ABSTRACT FROM AUTHOR]

Objectives To investigate factors associated with place of death of individuals in the Mount Sinai Visiting Doctors Program ( MSVD). Design A retrospective chart review was performed of all MSVD participants who died in 2012 to assess predictors of place of death in the last month of life. Setting MSVD, a home-based primary and palliative care program in New York. Participants MSVD participants who were discharged from the program because of death between January 2012 and December 2012 and died at home, in inpatient hospice, or in the hospital (N = 183). Measurements Electronic medical records were reviewed to collect information on demographic characteristics, physician visits, and end-of-life conversations. Results Of 183 participants, 103 (56%) died at home, approximately twice the national average; 28 (15%) died in inpatient hospice; and 52 (28%) died in the hospital. Bivariate analyses showed that participants who were white, aged 90 and older, non-Medicaid, or had a recorded preference for place of death were more likely to die outside the hospital. Diagnoses and living situation were not significantly associated with place of death. Multivariate logistic regression analysis showed no statistical association between place of death and home visits in the last month of life (odds ratio = 1.21, 95% confidence interval = 0.52-2.77). Conclusion Home-based primary and palliative care results in a high likelihood of nonhospital death, although certain demographic characteristics are strong predictors of death in the hospital. For MSVD participants, home visits in the last month of life were not associated with death outside the hospital. [ABSTRACT FROM AUTHOR]

If much has been written of the forms of bodiliness reinforced by hospitals, less attention has been paid to the medicalization of the soul. The medical management of death institutionalizes divisions between body and soul, and matter and spirit, infusing end-of-life care with latent Christian theological presumptions. The invisibility of these presumptions is partly sustained by projecting religiosity on those who endorse other cosmologies, while retaining for medicine a mask of secular science. Stories of conflict with non-Christian patients force these presumptions into visibility, suggesting alternative ethics of care and mourning rooted in other understandings. In this article, I explore one such story. Considering the story as an allegory for how matter and spirit figure in contemporary postmortem disciplines, I suggest that it exposes both the operation of a taboo against mixing material and spiritual agendas, and an assumption that appropriate mourning is oriented toward symbolic homage, rather than concern for the material welfare of the dead. [ABSTRACT FROM AUTHOR]

Objectives To examine the characteristics of hospice enrollees with dementia who were discharged alive because their condition stabilized or improved and predictors of death in the year after discharge. Design Cross-sectional analysis of clinical and administrative data. Setting For-profit hospice provider. Participants Hospice enrollees aged 65 and older with an admission diagnosis of dementia who died or were discharged alive because their condition stabilized or improved between January 1, 1999, and December 31, 2003. Measurements Demographic variables and hospice length of stay; data did not include functional status or comorbidities. Results Of 24,111 enrollees with dementia, 1,204 (5.0%) were discharged alive because their condition stabilized or improved; the remainder died while receiving hospice. The median length of stay for those who died was 12 versus 236 days for those discharged alive. Those discharged alive were more likely to be female or have a length of stay exceeding 180 days and less likely to be in the oldest age group (≥85), be African American, or reside in a nursing home. In a subgroup of 303 patients discharged alive, 75.5% were still alive at 1 year; none of the demographic variables were associated with death after hospice discharge. Conclusion A small proportion of hospice enrollees with dementia was discharged alive. Most died shortly after enrollment. Future research should examine other factors that may predict which hospice enrollees with dementia are likely to be discharged alive and their subsequent trajectory, such as functional status, comorbidities, and preferences for care. [ABSTRACT FROM AUTHOR]

BACKGROUND: Although end-of-life care preferences vary across racial/ethnic groups, little is known about how cultural values affect end-of-life care preferences among South Asian immigrants and their offspring in the US. OBJECTIVE: To examine the perspectives of first- and second-generation South Asians living in the US regarding end-of-life care. DESIGN: Focus group study. Discussions explored participant preferences and experiences with family members facing the end of life. PARTICIPANTS: Twelve first-generation and 11 second-generation self-identified Asian Indians living in the mid-Atlantic region. APPROACH: Content analysis of focus group transcripts. RESULTS: First-generation participants ranged in age from 41 to 76 years and were evenly split by gender. Second-generation participants ranged in age from 23 to 36 years and included seven women and four men. All participants were highly educated, and two thirds were either studying or working in a health care field. All but two subjects were Hindu. Several themes emerged that highlighted cultural differences and challenges for this population in the context of end-of-life care: attitudes toward death and suffering; family duty; and preferences for information disclosure and decision making. Participants described cultural challenges due to the evolution of traditional roles, lack of explicit discussion between patients and family members about preferences and care expectations, and a tension between wanting to meet traditional expectations and the challenges in doing so given US social realities. CONCLUSIONS: Traditional cultural values, such as duty to family, greatly influenced end-of-life care preferences and retained importance across generations. Clinicians caring for Asian Indian patients at the end of life may be better able to assess care preferences after exploring the complex interplay between traditional expectations and specific social realities for each patient. Particular attention should be given to attitudes toward death and suffering, family duty, and preferences for information disclosure and decision making. [ABSTRACT FROM AUTHOR]

Nearly half of Americans who die in hospitals spend time in the intensive care unit (ICU) in the last 3 days of life. Minority patients who die in the ICU are less likely to formalize advance directives and surviving family members report lower satisfaction with the provision of information and sensitivity to their cultural traditions at the end-of-life. This is a descriptive report of a convenience sample of 157 consecutive patients served by a palliative care team which was integrated into the operations of an ICU at Montefiore Medical Center in the Bronx, New York, from August 2005 until August 2007. The team included an advance practice nurse (APN) and social worker. A separate case-control study was conducted comparing the length of hospital stay for persons who died in the ICU during the final 6 months of the project, prior to and post-palliative care consultation for 22 patients at the hospital campus where the project team was located versus 24 patients at the other campus. Pharmaco-economic data were evaluated for 22 persons who died with and 43 who died without a palliative care consultation at the intervention campus ICU to evaluate whether the project intervention was associated with an increase in the use of pain medications or alterations in the use of potentially non-beneficial life-prolonging treatments in persons dying in the ICU. Data was abstracted from the medical record with a standardized chart abstraction instrument by an unblinded research assistant. Interviews were conducted with a sample of family members and ICU nurses rating the quality of end-of-life care in the ICU with the Quality of Dying and Death in the ICU instrument (ICUQODD), and a family focus group was also conducted. Forty percent of patients were Caucasian, 35% were African American or Afro-Caribbean, 22% Hispanic and 3% were Asian or other. Exploration of the patients' and families' needs identified significant spiritual needs in 62.4% of cases. Education on the death process was provided to 85% of families by the project team. Twenty-nine percent of patients were disconnected from mechanical ventilators following consultation with the Palliative Care Service (PCS), 15.9% of patients discontinued the use of inotropic support, 15.3% stopped artificial nutrition, 6.4% stopped dialysis and 2.5% discontinued artificial hydration. Recommendations on pain management were made for 51% of the project's patients and symptom management for 52% of patients. The project was associated with an increase in the rate of the formalization of advance directives. Thirty-three percent of the patients who received PCS consultations had 'do not resuscitate' orders in place prior to consultation and 83.4% had 'do not resuscitate' orders after the intervention. The project team referred 80 (51%) of the project patients to hospice and 55 (35%) patients were enrolled on hospice, primarily at the medical center. The mean time from admission to palliative care consultation at the project site was 2.8 days versus 15.5 days at the other campus (p=0.0184). Median survival times from admission to the medical center were not significantly different when stratified by palliative care consultation status: 12 days for the control group (95% CI 8-18) and 13.5 days for the intervention group (95% CI 8-20). Median charges for the use of opioid medications were higher (p=0.01) for the intervention group but lower for use of laboratory (p=0.004) and radiology tests (p=0.027).We conclude that the integration of palliative care experts into the operation of critical care units is of benefit to patients, families and critical care clinicians. Preliminary evidence suggest that such models may be associated with improved quality of life, higher rates of formalization of advance directives and utilization of hospices, as well as lower use of certain non-beneficial life-prolonging treatments for critically ill patients who are at the end of life. [ABSTRACT FROM AUTHOR]

Information about several issues discussed at a symposium sponsored by the Agency for Health Care Research and Quality, and the National Cancer Institute on quality indicators relevant to cancer. Topics include the eight key domains in end-of-life cancer care such as pain, dyspnea and depression. The symposium featured representatives from stakeholder groups such as health maintenance organizations.

To describe the contributions to care that family members perform while their loved one is at high risk of dying in the intensive care unit. Exploratory, descriptive analysis. Two intensive care units at a tertiary medical center in the western United States. Through purposive sampling, 25 family members of 24 ICU patients at high risk of dying participated in the study. None. A qualitative, descriptive technique was used for data analysis. Three independent raters coded transcripts of audiotaped interviews with family members about their experiences in the ICU. Recurring themes were categorized into roles that family members take on while their loved one is in the ICU. These work roles consisted of active presence, patient protector, facilitator, historian, coach, and voluntary caregiver. Family members are important to patient care in the ICU. They perform multiple roles that are often not valued or go unrecognized by ICU health care providers. More support and appreciation of family members' contributions to care may provide families opportunities for intimacy and promote a sense of belonging in the highly technical environment of an ICU. [ABSTRACT FROM AUTHOR]

Although technological advancements have provided the means to sustain life and provide care regardless of whether the treatment is appropriate and compassionate given the condition of the patient, bioethical, legal, and moral concerns related to disparities in care still arise in the United States. These concerns call into question the necessity to continue life-sustaining or palliative care treatments when patients and/or families are faced with end-of-life decisions. This study will focus on various historical, clinical cultural, and ethical issues that have placed this dilemma into a controversial public spectrum, by using case studies retrieved from referenced literature, which illustrate disparities in care at the end of life [ABSTRACT FROM AUTHOR]

Roman Catholic healthcare institutions in the United States face a number of threats to the integrity of their missions, including the increasing religious and moral pluralism of society and the financial crisis many organizations face. These organizations in the United States often have fought fervently to avoid being obligated to provide interventions they deem intrinsically immoral, such as abortion. Such institutions no doubt have made numerous accommodations and changes in how they operate in response to the growing pluralism of our society, but they have resisted crossing certain lines and providing particular interventions deemed objectively wrong. Catholic hospitals in Belgium have responded differently to pluralism. In response to a growing diversity of moral views and to the Belgian Act of Euthanasia of 2002, Catholic hospitals in Belgium now engage in euthanasia. This essay examines a defense that has been offered of this practice of euthanasia in Catholic hospitals and argues that it is misguided. [ABSTRACT FROM AUTHOR]

Aim:To assess the impact of three educational presentations as an intervention for increasing knowledge of end-of-life care for rural nurses in assisted living and nursing home environments. Design: A repeated measures design (quantitative component) evaluated the effects of the educational intervention. Two open ended questions yielded qualitative data. Sample and Setting: A convenience sample (n = 9) of Registered Nurses and Licensed Practical Nurses employed in an assisted living facility or nursing home in the rural, southeastern region of the USA. Level of nursing experience ranged from 6 to 28 years. Analysis: Frequency distributions, difference of means test for paired samples. Results: Post test scores were significantly higher (t = 6.999; p < 0.001) than pretest scores regarding overall knowledge on end- of-life care. Attitudes and perceptions of participants changed in defining what constitutes a 'good death'. Conclusions: Classroom educational presentations are an effective means of changing attitudes and improving end-of- life care knowledge. Additional education and support for rural nursing personnel involved with residents of long term care may enhance end-of-life care. [ABSTRACT FROM AUTHOR]

Care of patients at the end of life is contingent on adequate preparation of health care providers. Nursing, as the predominant caring profession in end-of-life (EOL) care, must achieve competence in physical and psychosocial care of patients and families facing terminal illness. Previous research has demonstrated that nursing education has not prepared nurses to provide optimum EOL care. To date, there has not been a unified or organized effort to broadly address the preparation of nurses in EOL care. This article describes one national project, the End-of- Life Nursing Education Consortium (ELNEC), which was developed as a comprehensive effort to improve EOL care by nurses in the United States. The ELNEC project consists of EOL education for various nursing audiences: the undergraduate faculty; continuing education providers; pediatrics; oncology; and the graduate faculty. This organized effort is a major step towards strengthening nursing knowledge in EOL care to improve care of the dying. [ABSTRACT FROM AUTHOR]

To assess the status of geriatric medicine (GM) fellows' training experiences in end-of-life care via self-report.Anonymous surveys completed by mail, Web access, and telephone.U.S. accredited GM fellowship training programs.Two hundred ninety-six surveys were sent to graduating GM fellows in 1- and 2-year programs across the Unites States.Measurements assessed self-reported attitudes, quantity and quality of end-of-life care education, preparation to provide care, and perceived value of caring for dying patients.Response rate was 74%. Ninety-five percent or more of respondents held positive views about physicians' responsibility and ability to help dying patients. Seventy percent of fellows had completed a rotation focused on end-of-life care. Fellows who had done such rotations rated their end-of-life care education as highly as their overall geriatrics training. Fellows frequently received teaching in many end-of-life care topics, with lower rates of teaching how to say goodbye and responding to requests for assisted suicide. Overall, fellows felt well prepared to care for dying patients. Four factors independently predicted such preparedness: having had a palliative or end-of-life care rotation, being female, having been taught how to say goodbye to patients, and perceiving that it is important to attending physicians that fellows learn to care for dying patients.GM fellows feel their end-of-life care education is excellent and feel prepared to take care of dying patients. It is critical that geriatricians in training have access to and take advantage of palliative and end-of-life care rotations. [ABSTRACT FROM AUTHOR]

The jurors identified numerous problems with end of life in the ICU including variability in practice, inadequate predictive models for death, elusive knowledge of patient preferences, poor communication between staff and surrogates, insufficient or absent training of health-care providers, the use of imprecise and insensitive terminology, and incomplete documentation in the medical records. The jury strongly recommends that research be conducted to improve end-of-life care. The jury advocates a "shared" approach to end-of-life decision-making involving the caregiver team and patient surrogates. Respect for patient autonomy and the intention to honour decisions to decline unwanted treatments should be conveyed to the family. The process is one of negotiation, and the outcome will be determined by the personalities and beliefs of the participants. Ultimately, it is the attending physician's responsibility, as leader of the health-care team, to decide on the reasonableness of the planned action. In the event of conflict, the ICU team may agree to continue support for a predetermined time. Most conflicts can be resolved. If the conflict persists, however, an ethics consultation may be helpful. Nurses must be involved in the process. The patient must be assured of a pain-free death. The jury of the Consensus Conference subscribes to the moral and legal principles that prohibit administering treatments specifically designed to hasten death. The patient must be given sufficient analgesia to alleviate pain and distress; if such analgesia hastens death, this "double effect" should not detract from the primary aim to ensure comfort. [ABSTRACT FROM AUTHOR]

Palliative care is emerging as an important new field. Although programs are developing in hospital environments, little is known about development of programs in outpatient practices or those serving large managed care populations. This article provides a framework for the development of a comprehensive palliative care program in a large multispecialty group practice that serves managed care patients. The article addresses guiding principles, the need for obtaining baseline data, how the clinical consultation service was established, development of outcomes measures, and information on current program status. Five themes emerged as key to successful program development, most importantly the close collaboration between administrative and clinical staff in all aspects of program development. [ABSTRACT FROM AUTHOR]