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Objectives: Congruence between the preferred and actual place of death is recognised as an important quality indicator in end-of-life care. However, there may be complexities about preferences that are ignored in summary congruence measures. This article examined factors associated with preferred place of death, actual place of death, and congruence for a sample of patients who had received specialist palliative care in the last three months of life in Ireland. Methods: This article analysed merged data from two previously published mortality follow-back surveys: Economic Evaluation of Palliative Care in Ireland (EEPCI); Irish component of International Access, Rights and Empowerment (IARE I). Logistic regression models examined factors associated with (a) preferences for home death versus institutional setting, (b) home death versus hospital death, and (c) congruent versus non-congruent death. Setting: Four regions with differing levels of specialist palliative care development in Ireland. Participants: Mean age 77, 50% female/male, 19% living alone, 64% main diagnosis cancer. Data collected 2011-2015, regression model sample sizes: n = 342-351. Results: Congruence between preferred and actual place of death in the raw merged dataset was 51%. Patients living alone were significantly less likely to prefer home versus institution death (OR 0.389, 95%CI 0.157-0.961), less likely to die at home (OR 0.383, 95%CI 0.274-0.536), but had no significant association with congruence. Conclusions: The findings highlight the value in examining place of death preferences as well as congruence, because preferences may be influenced by what is feasible rather than what patients would like. The analyses also underline the importance of well-resourced community-based supports, including homecare, facilitating hospital discharge, and management of complex (eg, non-cancer) conditions, to facilitate patients to die in their preferred place.

Context: For patients with advanced cancer, high intensity treatment at the end of life is measured as a reflection of the quality of care. Use of specialist palliative care has been promoted to improve care quality, but whether its use is associated with decreased treatment intensity on a population-level is unknown., Objectives: To determine whether receipt of specialist palliative care use is associated with differences in end-of-life quality metrics in patients with metastatic cancer., Methods: Retrospective propensity-matched cohort of patients age ≥ 65 who died with metastatic cancer in U.S. hospitals with palliative care programs that participated in the National Palliative Care Registry in 2018-2019. Cox proportional hazards regression was used to assess the impact of specialist palliative care on use of chemotherapy in the last 14 days of life, use of intensive care unit (ICU) in the last 30 days of life, use of hospice, and hospice enrollment ≥ three days., Results: After 1:2 matching, our cohort consisted of 15,878 exposed and 31,756 unexposed patients. Receipt of specialist palliative care was associated with a decrease in use of chemotherapy (adjusted hazard ratio (aHR) 0.59 [0.50-0.70]) and ICU at the end of life (aHR 0.86 [0.80-0.92]), and an increase in hospice use (aHR 1.92 [1.85-1.99]) and hospice enrollment for ≥three days (aHR 2.00 [1.93-2.07])., Conclusion: On a population-level, use of specialist palliative care was associated with improved metrics for quality end-of-life care for patients dying with metastatic cancer, underscoring the importance of its integration into cancer care., (Copyright © 2024 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Background: According to the Grattan institute in 2014, 70% of Australians indicated a preference to die at home, however, only 14% of all deaths were at home., Aims: To identify how patients can be supported to die at home if that is their preference., Methods: A retrospective medical record audit of eligible Community Palliative Care (CPC) patients who indicated a wish to die at home was undertaken., Findings: Out of a total of 114 patients, 74% indicated a preference to die at home. Of these, 66% achieved a home death, and most lived with a carer. Enablers for home death included family support, regular nursing visits and equipment. People who attended an emergency department in their last month of life, lived alone or were undergoing oncological treatment were more likely to die elsewhere., Conclusion: A range of enablers and barriers to home death were found, with many of the enablers being factors that prevented hospital presentations.

Background: At the end of life, formal care costs are high. Informal care (IC) costs, and their effects on outcomes, are not known. This study aimed to determine the IC costs for older adults in the last 3 months of life, and their relationships with outcomes, adjusting for care quality., Methods: Mortality follow-back postal survey., Setting: Palliative care services in England (London), Ireland (Dublin) and the USA (New York, San Francisco)., Participants: Informal carers (ICrs) of decedents who had received palliative care., Data: ICrs reported hours and activities, care quality, positive aspects and burdens of caregiving, and completed the Texas Revised Inventory of Grief (TRIG)., Analysis: All costs (formal, informal) were calculated by multiplying reported hours of activities by country-specific costs for that activity. IC costs used country-specific shadow prices, e.g. average hourly wages and unit costs for nursing care. Multivariable logistic regression analysis explored the association of potential explanatory variables, including IC costs and care quality, on three outcomes: positive aspects and burdens of caregiving, and subsequent grief., Results: We received 767 completed surveys, 245 from London, 282 Dublin, 131 New York and 109 San Francisco. Most respondents were women (70%); average age was 60 years. On average, patients received 66-76 h per week from ICrs for 'being on call', 52-55 h for ICrs being with them, 19-21 h for personal care, 17-21 h for household tasks, 15-18 h for medical procedures and 7-10 h for appointments. Mean (SD) IC costs were as follows: USA $32,468 (28,578), England $36,170 (31,104) and Ireland $43,760 (36,930). IC costs accounted for 58% of total (formal plus informal) costs. Higher IC costs were associated with less grief and more positive perspectives of caregiving. Poor home care was associated with greater caregiver burden., Conclusions: Costs to informal carers are larger than those to formal care services for people in the last three months of life. If well supported ICrs can play a role in providing care, and this can be done without detriment to them, providing that they are helped. Improving community palliative care and informal carer support should be a focus for future investment.

Importance: Medicare Advantage (MA) insures an increasing proportion of Medicare beneficiaries, but evidence is lacking on patient or family perceptions of the quality of end-of-life care in MA vs traditional Medicare., Objective: To determine if there is a difference in quality of care reported by family and friends of individuals who died while insured by MA vs traditional Medicare at the end of life., Design, Setting, and Participants: This cross-sectional study used the 2011 to 2017 Medicare-linked National Health and Aging Trends Study to conduct population-based survey research representing 8 668 829 Medicare enrollees. Included individuals were 2119 enrollees who died when aged 65 years or older, with quality of care reported by a family member or close friend familiar with the individual's last month of life. Analysis was conducted in July 2020., Exposures: MA enrollment at the time of death or before hospice enrollment., Main Outcomes and Measures: Perception of end-of-life care was measured with 9 validated items, with the primary outcome variable being overall care rated not excellent. We conducted a propensity score-weighted multivariable model to examine the association of each item with MA vs traditional Medicare enrollment. The propensity score and multivariable model included covariates capturing demographic and socioeconomic factors, function and health, and relationship of the respondent to the individual who died. The sample was then stratified by hospice enrollment and setting of care in the last month., Results: Of 2119 people in the sample, 670 individuals were enrolled in MA at the time of death or prior to hospice (32.7%) and 1449 were enrolled in traditional Medicare (67.3%). In survey-weighted percentages, 53.6% (95% CI, 51.0% to 56.1%) were women and 43.4% (95% CI, 41.5% to 45.3%) were older than 85 years at the time of death. In the adjusted model, family and friends of individuals in MA were more likely to report that care was not excellent (odds ratio, 1.28; 95% CI, 1.01 to 1.61; P = .04) and that they were not kept informed (odds ratio, 1.48; 95% CI, 1.06 to 2.05; P = .02). For those in nursing homes, there was an estimated probability of 57.2% of respondents reporting that care was not excellent for individuals with traditional Medicare, compared with 77.9% of respondents for individuals with MA (marginal increase for those in MA, 0.21; 95% CI, 0.08 to 0.32; P = .001)., Conclusions and Relevance: In this cross-sectional study of people who died while enrolled in Medicare, friends and family of those in MA reported lower-quality end-of-life care compared with friends and family of those enrolled in traditional Medicare. These findings suggest that, given the rapid growth of MA, Medicare should take steps to ensure that MA plans are held accountable for quality of care at the end of life.

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.

Importance: The use of intensive care at the end of life continues to be common. Although the provision of palliative care has been advocated as a way to mitigate the use of high-intensity care, it is unknown whether implementation of hospital-based palliative care services is associated with reduced use of intensive care at the end of life., Objective: To determine whether implementation of hospital-based palliative care services is associated with decreased intensive care unit (ICU) use during terminal hospitalizations., Design, Setting, and Participants: This cohort study included 51 hospitals in New York State that either did or did not implement a palliative care program between 2008 and 2014. Hospitals that consistently had a palliative care program during the study period were excluded. Participants were adult patients who died during hospitalization. Data analysis was performed between January 2018 and July 2019., Exposure: Implementation of a palliative care program., Main Outcomes and Measures: The primary outcome was ICU use. A difference-in-differences analysis was performed using multilevel regression to assess the association between implementing a palliative care program and ICU use during terminal hospitalizations while adjusting for patient and hospital characteristics and time trends., Results: During the study period, 73 370 patients (mean [SD] age, 76.5 [14.1] years; 38 467 [52.4%] women) died during hospitalization, of whom 37 628 (51.3%) received care in hospitals that implemented palliative care services and 35 742 (48.7%) received care in a hospital without palliative care implementation. Patients who received care in hospitals after implementation of palliative care services were less likely to receive intensive care than patients admitted to the same hospitals before implementation (49.3% vs 52.8%; difference 3.5%; 95% CI, 2.5%-4.5%; P < .001). Compared with hospitals that never had a palliative care program, the implementation of palliative care was associated with a 10% reduction in ICU use during terminal hospitalizations (adjusted relative risk, 0.90; 95% CI, 0.85-0.95; P < .001)., Conclusions and Relevance: The implementation of hospital-based palliative care services in New York State was associated with a modest reduction in ICU use during terminal hospitalizations.

Background: Racial and ethnic disparities in the provision of end-of-life care are well described in the adult oncology literature. However, the impact of racial and ethnic disparities at end of life in the context of pediatric oncology remains poorly understood., Objective: To investigate associations between end-of-life experiences and race/ethnicity for pediatric patients with cancer., Methods: A retrospective cohort study was conducted on 321 children with cancer enrolled on a palliative care service at an urban pediatric cancer who died between 2011 and 2015., Results: Compared to white patients, black patients were more likely to receive cardiopulmonary resuscitation (CPR; odds ratio [OR]: 4.109, confidence interval [CI]: 1.432-11.790, P = .009) and underwent 3.136 (CI: 1.433-6.869, P = .004) CPR events for every 1 white patient CPR event. The remainder of variables related to treatment and end-of-life care were not significantly correlated with race. Hispanic patients were less likely to receive cancer-directed therapy within 28 days prior to death (OR: 0.493, CI: 0.247-0.982, P = .044) as compared to non-Hispanic patients, yet they were more likely to report a goal of cure over comfort as compared to non-Hispanic patients (OR: 3.094, CI: 1.043-9.174, P = .042). The remainder of variables were not found to be significantly correlated with ethnicity., Conclusions: Race and ethnicity influenced select end-of-life variables for pediatric palliative oncology patients treated at a large urban pediatric cancer center. Further multicenter investigation is needed to ascertain the impact of racial/ethnic disparities on end-of-life experiences of children with cancer.

Background: Achieving choice is proposed as a quality marker. But little is known about what influences preferences especially among older adults. We aimed to determine and compare, across three countries, factors associated with preferences for place of death and treatment, and actual site of death., Methods: We recruited adults aged ≥65-years from hospital-based multiprofessional palliative care services in London, Dublin, New York, and followed them for >17 months. All services offered consultation on hospital wards, support for existing clinical teams, outpatient services and received funding from their National Health Service and/or relevant Insurance reimbursements. The New York service additionally had 10 inpatient beds. All worked with and referred patients to local hospices. Face-to-face interviews recorded most and least preferred place of death, treatment goal priorities, demographic and clinical information using validated questionnaires. Multivariable and multilevel analyses assessed associated factors., Results: One hundred and thirty eight older adults (64 London, 59 Dublin, 15 New York) were recruited, 110 died during follow-up. Home was the most preferred place of death (77/138, 56%) followed by inpatient palliative care/hospice units (22%). Hospital was least preferred (35/138, 25%), followed by nursing home (20%) and home (16%); hospice/palliative care unit was rarely least preferred (4%). Most respondents prioritised improving quality of life, either alone (54%), or equal with life extension (39%); few (3%) chose only life extension. There were no significant differences between countries. Main associates with home preference were: cancer diagnosis (OR 3.72, 95% CI 1.40-9.90) and living with someone (OR 2.19, 1.33-3.62). Adults with non-cancer diagnoses were more likely to prefer palliative care units (OR 2.39, 1.14-5.03). Conversely, functional independence (OR 1.05, 1.04-1.06) and valuing quality of life (OR 3.11, 2.89-3.36) were associated with dying at home. There was a mismatch between preferences and achievements - of 85 people who preferred home or a palliative care unit, 19 (25%) achieved their first preference., Conclusion: Although home is the most common first preference, it is polarising and for 16% it is the least preferred. Inpatient palliative care unit emerges as the second most preferred place, is rarely least preferred, and yet was often not achieved for those who wanted to die there. Factors affecting stated preferences and met preferences differ. Available services, notably community support and palliative care units, require expansion. Contrasting actual place of death with capacity for meeting patient and family needs may be a better quality indicator than simply 'achieved preferences'.

Context: Family satisfaction is an important and commonly used research measure. Yet current measures of family satisfaction are lengthy and may be unnecessarily burdensome--particularly in the setting of serious illness., Objectives: To use an item bank to develop short forms of the Family Satisfaction with End-of-Life Care (FAMCARE) scale, which measures family satisfaction with care., Methods: To shorten the existing 20-item FAMCARE measure, item response theory parameters from an item bank were used to select the most informative items. The psychometric properties of the new short-form scales were examined. The item bank was based on data from family members from an ethnically diverse sample of 1983 patients with advanced cancer., Results: Evidence for the new short-form scales supported essential unidimensionality. Reliability estimates from several methods were relatively high, ranging from 0.84 for the five-item scale to 0.94 for the 10-item scale across different age, gender, education, ethnic, and relationship groups., Conclusion: The FAMCARE-10 and FAMCARE-5 short-form scales evidenced high reliability across sociodemographic subgroups and are potentially less burdensome and time-consuming scales for monitoring family satisfaction among seriously ill patients., (Copyright © 2015 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Background: Hospital use near the end of life is often undesirable to patients, represents considerable Medicare cost, and varies widely across regions., Objective: To concurrently examine regional and patient factors, including disability and functional decline, associated with end-of-life hospital use., Design/participants: We sampled decedents aged 65 and older (n = 2,493) from the Health and Retirement Study (2000-2006), and linked data from individual Medicare claims and the Dartmouth Atlas of Health Care. Two-part regression models estimated the relationship between total hospital days in the last 6 months and patient characteristics including physical function, while adjusting for regional resources and hospital care intensity (HCI)., Key Results: Median hospital days was 7 (range = 0-183). 53% of respondents had functional decline. Compared with decedents without functional decline, those with severe disability or decline had more regression-adjusted hospital days (range 3.47-9.05, depending on category). Dementia was associated with fewer days (-3.02); while chronic kidney disease (2.37), diabetes (2.40), stroke or transient ischemic attack (2.11), and congestive heart failure (1.74) were associated with more days. African Americans and Hispanics had more days (5.91 and 4.61, respectively). Those with family nearby had 1.62 fewer days and hospice enrollees had 1.88 fewer days. Additional hospital days were associated with urban residence (1.74) and residence in a region with more specialists (1.97) and higher HCI (2.27)., Conclusions: Functional decline is significantly associated with end-of-life hospital use among older adults. To improve care and reduce costs, health care programs and policies should address specific needs of patients with functional decline and disability.

Background: End-of-life medical expenditures exceed costs of care during other years, vary across regions, and are likely to be unsustainable. Identifying determinants of expenditure variation may reveal opportunities for reducing costs., Objective: To identify patient-level determinants of Medicare expenditures at the end of life and to determine the contributions of these factors to expenditure variation while accounting for regional characteristics. It was hypothesized that race or ethnicity, social support, and functional status are independently associated with treatment intensity and controlling for regional characteristics, and that individual characteristics account for a substantial proportion of expenditure variation., Design: Using data from the Health and Retirement Study, Medicare claims, and The Dartmouth Atlas of Health Care, relationships were modeled between expenditures and patient and regional characteristics., Setting: United States, 2000 to 2006., Participants: 2394 Health and Retirement Study decedents aged 65.5 years or older., Measurements: Medicare expenditures in the last 6 months of life were estimated in a series of 2-level multivariable regression models that included patient, regional, and patient and regional characteristics., Results: Decline in function (rate ratio [RR], 1.64 [95% CI, 1.46 to 1.83]); Hispanic ethnicity (RR, 1.50 [CI, 1.22 to 1.85]); black race (RR, 1.43 [CI, 1.25 to 1.64]); and certain chronic diseases, including diabetes (RR, 1.16 [CI, 1.06 to 1.27]), were associated with higher expenditures. Nearby family (RR, 0.90 [CI, 0.82 to 0.98]) and dementia (RR, 0.78 CI, 0.71 to 0.87]) were associated with lower expenditures, and advance care planning had no association. Regional characteristics, including end-of-life practice patterns (RR, 1.09 [CI, 1.06 to 1.14]) and hospital beds per capita (RR, 1.01 [CI, 1.00 to 1.02]), were associated with higher expenditures. Patient characteristics explained 10% of overall variance and retained statistically significant relationships with expenditures after regional characteristics were controlled for., Limitation: The study limitations include the decedent sample, proxy informants, and a large proportion of unexplained variation., Conclusion: Patient characteristics, such as functional decline, race or ethnicity, chronic disease, and nearby family, are important determinants of expenditures at the end of life, independent of regional characteristics., Primary Funding Source: The Brookdale Foundation.

Objective: To understand potential patient barriers to discussions about implantable cardioverter defibrillator (ICD) deactivation in patients with advanced illness., Design: Qualitative focus groups., Participants: Fifteen community-dwelling, ambulatory patients with ICDs assigned to focus groups based on duration of time since implantation and whether they had ever received a shock from their device., Approach: A physician and a social worker used a predetermined discussion guide to moderate the groups, and each session was audiotaped and subsequently transcribed. Transcripts were analyzed using the method of constant comparison., Results: No participant had ever discussed deactivation with their physician nor knew that deactivation was an option. Patients expressed a great deal of anxiety about receiving shocks from their device. Participants discussed why they needed the device and expressed desire for more information about the device; however, they would not engage in conversations about deactivating the ICD. One patient described deactivation "like an act of suicide" and all patients believed that the device was exclusively beneficial. Patients also expressed a desire to have their physician make the decision about deactivation., Conclusions: None of the patients in our study knew that they might need to deactivate their ICD as their health worsens. These community-dwelling outpatients were not willing to discuss the issue of ICD deactivation and their attitudes about deactivation might impede patients from engaging in these conversations. These findings are in contrast to findings in other advance care planning research and may be related to the unique nature of the ICD.

The field of palliative care in the United States developed in response to a public health crisis--namely, poor quality of life for patients with serious illness and their families--and most palliative care research to date has been appropriately focused on identifying patient and family needs and identifying gaps in the current health care system and in the education of our health care professionals. Research has also begun to develop and evaluate new interventions and systems to address these care gaps. Preliminary studies suggest modest benefits of an array of programs designed to deliver palliative care services. These benefits include improved pain and other symptoms, increased family satisfaction, and lower hospital costs. Unfortunately, the validity and reliability of these findings are limited by important methodological weaknesses including small sample sizes, poorly described and nongeneralizable interventions, diverse and nonstandardized outcome measures, and poor study designs (i.e., lack of appropriate control groups, nonblinded designs). Comprehensive and rigorous research is needed to evaluate the effect of well-delineated and generalizable palliative care structures and processes on important clinical and use outcomes. Large multisite studies that have adequate power to detect meaningful differences in clinical and use outcomes, and that use well-defined and generalizable structures and evidence-based care processes, well-defined uniform outcome measures, and analyses that link the outcomes of interest to individual components of the interventions, are needed to guide further development of the field.

Background: Advance directives have not been uniformly used by different segments of the US population and studies have consistently shown a lower prevalence of advance directives among African Americans and Hispanics compared with non-Hispanic whites., Objective: To examine barriers to completion of health care proxies for different ethnic groups., Methods: One hundred ninety-seven subjects aged 65 years or older self-identified as African American (n = 65), Hispanic (n = 65), or non-Hispanic white (n = 67) attending a geriatrics and internal medicine outpatient clinic of a large New York City teaching hospital were administered a questionnaire. Questionnaires were developed to examine potential barriers to completion of health care proxies. Barriers were drawn from the literature and from focus groups., Results: Significant predictors of proxy completion using logistic regression analysis included knowledge of health care proxies, availability of a health care agent, exposure to mechanical ventilation, age, and self-reported health status as fair to poor. Subjects who believed that a health care agent was irrelevant in the setting of involved family were significantly less likely to have completed a health care proxy. Although there were significant differences in the baseline completion rates of health care proxies for the 3 ethnic groups, ethnicity did not predict prior appointment of a health care agent in multivariate analysis., Conclusions: Differences in health care proxy completion rates across white, African American, and Hispanic elderly individuals in this New York City population seem to be related to potentially reversible barriers such as lack of knowledge and the perceived irrelevance of advance directives in the setting of involved family. Enhanced educational efforts of both health care personnel and patients could increase the rate of formal health care proxy appointment.

Background: Most Americans die in the acute care hospital, where aggressive, life-prolonging interventions are readily performed. Although patients with incurable illness might prefer palliative care, perceived differences in prognosis by physicians may influence the type of care provided. Patients with advanced cancer and advanced dementia represent 2 extremes in the use of hospice services and may also be treated differently in the acute care hospital. We tested this hypothesis and quantitated the use of nonpalliative interventions in hospitalized, incurably ill patients., Methods: Charts of elderly patients with advanced dementia or metastatic solid tumor malignancy who died during a 13-month period in a tertiary care acute teaching hospital were reviewed. Main outcome measures included the number of patients receiving invasive of noninvasive (but complex) diagnostic tests, invasive nonpalliative treatments, cardiopulmonary resuscitation, systemic antibiotics, and do-not-resuscitate orders., Results: Charts of 164 patients (80 with dementia and 84 with cancer) were reviewed. Overall, 47% received invasive nonpalliative treatments. Controlling for age, sex, length of stay, and insurance status, the groups were equally likely to receive nonpalliative treatments (P = .75), but patients with dementia were more likely to receive new feeding tubes (P = .02). Cardiopulmonary resuscitation was attempted for 24% of each group. Patients with cancer more often received invasive (41% vs 13%; P = .002) and complex noninvasive diagnostic tests (49% vs 23%; P = .02). Overall, 88% received antibiotics, often empirically, but, controlling for neutropenia and invasive tests and treatments, patients with dementia were significantly more likely to receive antibiotics for an identifiable infection (P = .004)., Conclusions: Incurably ill patients often receive nonpalliative interventions at the end of life. Patients with cancer receive more diagnostic tests, but patients with dementia receive more enteral tube feeding. Patients commonly receive systemic antibiotics, often empirically. Cardiopulmonary resuscitation is equally applied, but is out of proportion to expected survival.

Palliative medicine describes the care of patients with advanced disease. When cure is no longer possible, the goal becomes control of pain, other symptoms, and psychological distress. In the United States, palliation has been pioneered by the hospice movement for patients with disseminated cancer and AIDS. Palliative care is also appropriate for patients with many of the chronic diseases of aging. For medical, humanitarian, financial, and legal reasons, physicians are being called on to provide palliative care when they make the diagnosis of all illness that is unresponsive to curative treatment.

Background: Hospice care frequently includes hands-on care from hospice aides, but the need for hospice aide care may vary in residential settings (e.g., assisted livings and nursing homes). Objectives: The objective of this study is to compare hospice aide use and factors associated with use across residential settings. Design: This longitudinal cohort study used data from Medicare beneficiaries in the United States enrolled in the Medicare Current Beneficiary Survey (MCBS) who died between 2010 and 2019 and had hospice claims and available residential setting data in MCBS (n = 1,915). Analysis: Decedent hospice aide use was compared by residential settings; multivariable models controlling for sociodemographic, clinical/functional, and hospice characteristics examined factors associated with hospice aide care in different residential settings. Results: Hospice aide visits were least common in the community setting (64.4% vs. 76.6% vs. 72.6% with any hospice aide visits in community, assisted living, and nursing home, respectively, p = 0.001). In adjusted models, factors associated with hospice aide visits did not significantly differ by residential settings. Conclusions: Despite staff providing hands-on support in assisted livings and nursing homes, hospice aide visits were more common in residential as opposed to community settings, and factors associated with hospice aide visits were similar among settings. To maximize the potentially positive impact of hospice aides on overall care, additional work is needed to understand when hospice aides are used and how hospice aides collaborate with families and care teams. This will help to ensure that hospice care is appropriately tailored to individual care needs in all residential settings. [ABSTRACT FROM AUTHOR]

This Viewpoint summarizes some of the concerns and outlines the possible implications of the Medicare Advantage hospice carve-in for end-of-life care if existing trends continue. [ABSTRACT FROM AUTHOR]

The article focuses on the palliative care designed for the seriously ill patients. Topics discussed include the core concepts of palliative care, its core components, the differences between palliative care and hospice care, and the recent developments in palliative care in terms of psychological and physical symptoms.

Background: Research during the past few decades has greatly advanced our understanding of the cost, quality, and variability of medical care at the end of life. The current health-care policy debate has focused considerable attention on the unsustainable rate of spending and wide regional variation associated with medical treatments in the last year of life. New initiatives aim to standardize quality and reduce over-utilization at the end of life. We argue, however, that focusing exclusively on medical treatment at the end of life is not likely to lead to effective health-care policy reform or reduce costs. Specifically, end-of-life policy initiatives face the challenges of political feasibility, inaccurate prognostication, and gaps in the existing literature. Objectives: With the ultimate aim of improving the quality and efficiency of care, we propose a research and policy agenda guided by a new conceptual framework of factors associated with treatment intensity for patients with serious and complicated medical illness. This model not only expands the population of interest to include all adults with serious illness, but also provides a blueprint for the thorough investigation of the diverse and interconnected determinants of treatment intensity. Conclusions: The new conceptual framework presented in this paper can be used to develop future research and policy initiatives designed to improve the quality and efficiency of care for adults with serious illness. [ABSTRACT FROM AUTHOR]

Objective: To understand potential barriers to physician-initiated discussions about Implantable Cardioverter Defibrillator (ICD) deactivation in patients with advanced illness.Design: Qualitative one-on-one interviews.Participants: Four electrophysiologists, 4 cardiologists, and 4 generalists (internists and geriatricians) from 3 states.Approach: Clinicians were interviewed using open-ended questions to elicit their past experiences with discussing deactivating ICDs and to determine what barriers might impede these discussions. Transcripts of these interviews were analyzed using the qualitative method of constant comparison.Results: Although many physicians believed that conversations about deactivating ICDs should be included in advance care planning discussions, they acknowledged that they rarely did this. Physicians indicated that there was something intrinsic to the nature of these devices that makes it inherently difficult to think of them in the same context as other management decisions at the end of a patient's life. Other explanations physicians gave as to why they did not engage in conversations included: the small internal nature of these devices and hence absence of a physical reminder to discuss the ICD, the absence of an established relationship with the patient, and their own general concerns relating to withdrawing care.Conclusion: Whereas some of the barriers to discussing ICD deactivation are common to all forms of advance care planning, ICDs have unique characteristics that make these conversations more difficult. Future educational interventions will need to be designed to teach physicians how to improve communication with patients about the management of ICDs at the end of life. [ABSTRACT FROM AUTHOR]

Objective: To understand potential patient barriers to discussions about implantable cardioverter defibrillator (ICD) deactivation in patients with advanced illness.Design: Qualitative focus groups.Participants: Fifteen community-dwelling, ambulatory patients with ICDs assigned to focus groups based on duration of time since implantation and whether they had ever received a shock from their device.Approach: A physician and a social worker used a predetermined discussion guide to moderate the groups, and each session was audiotaped and subsequently transcribed. Transcripts were analyzed using the method of constant comparison.Results: No participant had ever discussed deactivation with their physician nor knew that deactivation was an option. Patients expressed a great deal of anxiety about receiving shocks from their device. Participants discussed why they needed the device and expressed desire for more information about the device; however, they would not engage in conversations about deactivating the ICD. One patient described deactivation "like an act of suicide" and all patients believed that the device was exclusively beneficial. Patients also expressed a desire to have their physician make the decision about deactivation.Conclusions: None of the patients in our study knew that they might need to deactivate their ICD as their health worsens. These community-dwelling outpatients were not willing to discuss the issue of ICD deactivation and their attitudes about deactivation might impede patients from engaging in these conversations. These findings are in contrast to findings in other advance care planning research and may be related to the unique nature of the ICD. [ABSTRACT FROM AUTHOR]

Reviews several journal articles which investigated various aspects of hospice and palliative care. "Sedative Use in the Last Week of Life and the Implications for End-of-Life Decision-Making," by N. Sykes and A. Thorns; "Hospice Enrollment and Pain Assessment and Management in Nursing Homes," by S. C. Miller, V. Mor and J. Teno; "Meta-Analysis of the Effect of Psychoeducational Interventions on Pain in Adults With Cancer," by E.C. Devine.

Most seriously ill Americans live at home under the care of their primary physician and with the support of family caregivers. To reduce costs while simultaneously improving the quality of patient care, insurers have increasingly turned to the concept of case management. While case management is targeted to individuals with life-threatening illnesses, palliative care assessment and interventions are typically not included in the management protocols. An academic/care management/health plan partnership between Mount Sinai School of Medicine, Franklin Health, a care management organization, and South Carolina Blue Cross Blue Shield, was formed in 1998 to test the utility of integration of case management with formal palliative care assessment, feedback and recommendations to treating physicians, and ongoing support for implementation of a palliative care plan. The goal of the project was to ensure identification and optimal care of seriously ill patients' complex needs, while facilitating doctor-patient continuity, improving patient/family/physician communication,providing assistance withdecision-making, ensuringquality care at home, and promoting efficient use of health care resources. Care management nurses were randomly assigned to a control (usual care) group or to the intervention (palliative care) group. Intervention nurses were trained in formal palliative care assessment and interventions, supported by treatment protocols and communication strategies with treating physicians. Measurements included symptom burden, prescribing practices, advance care planning status, satisfaction, and health care utilization. These results are pending completion of study run-out and analysis. Preliminary programmatic results indicate that combining palliative care with the case management approach is a logical, feasible, and effective strategy to improve the care of seriously ill patients living in the community. Franklin Health has offered the program to their entire client base because they feel that the integration of palliative care into their case management program improved the standard of patient care. Blue Cross Blue Shield of South Carolina has also chosen to sustain this enhanced model of care management for seriously ill patients. [ABSTRACT FROM AUTHOR]

In the United States, the majority of deaths occur in the hospital but the dying process there is at best unsatisfactory and more likely inadequate for both patients and caregivers. The development of hospital-based palliative care programs (HBPCPs) can vastly improve inpatient end-of-life care. This study is the first to examine the prevalence and characteristics of HBPCPs in the United States, thus providing a snapshot of the characteristics of these HBPCPs. It also serves as a baseline and benchmark against which future development and patterns of HBPCPs can be compared. Phase 1: Data were obtained from the American Hospital Association (AHA) 1998 Annual Survey, on the existence of end-of-life care (EOLC) and pain management (PM) services in U.S. hospitals. Phase 2: A focused survey further assessed programs in Phase 1 and was sent to all registered hospitals that responded affirmatively to the AHA survey questions as having either a PM service, an EOLC service, or both. In phase 1, 1,751 (36%) hospitals reported having a PM service and 719 (15%) had an EOLC service, for a total of 2,015 unique hospitals that had one or both. For Phase 2, 1,120 of 2,015 responded (56%). Of these, 337 (30%) hospitals reported having an HBPCP, and another 228 (20.4%) had plans to establish one. HBPCPs are most commonly structured as inpatient consultation service and hospital-based hospice. They tend to be based in oncology, general medicine, and geriatrics. We also assessed reasons for consultation, patient characteristics, and future development needs. These findings can help guide future funding, educational, and programming efforts in hospital-based palliative care. [ABSTRACT FROM AUTHOR]

Highlights the type of palliative care received by dying patients in acute care hospitals in the United States. Unfamiliarity with concepts of palliative care by health professionals; Discussion of principles involved in palliative care; Provision of sustenance and comfort for dying patients. INSET: The dying patient: Artificial feeding and hydration..

Presents the clinical practice article of the week. Case of an 85-year-old man with class IV heart failure, hypertension and moderate Alzheimer's disease admitted to the hospital with a hip fracture; Complications of his postoperative period; Patient's wife who is overwhelmed by his needs; Questions what can the doctor do to address the patient's needs, alleviate his suffering and facilitate his discharge from the hospital and help with setting up care at home. Presentation of the clinical problem; Strategies and evidence; Physician and patient communication; Assessment and treatment of symptoms; Support for his wife; Coordination of care; Guidelines which are available from the National Comprehensive Cancer Network; Conclusions and recommendations.

1. Understand challenges in measuring specialist palliative care use in population-level data. 2. Understand evidence for specialist palliative care in improving quality metrics for end-of-life care in cancer care. In this propensity-matched cohort study of decedents with metastatic cancer, specialist palliative care was associated with significant decreased use of intensive care and chemotherapy at the end of life, and increased overall and earlier hospice use. Specialist palliative care may improve the quality of end-of-life care for patients with cancer. For patients with advanced cancer, high intensity burdensome treatment at the end of life continues to be prevalent. While specialist palliative care has been advocated to improve the quality of care, it is unknown whether its use is associated with decreased treatment intensity at the end of life on a population-level. To determine whether receipt of specialist palliative care is associated with differences in end-of-life quality metrics in patients with metastatic cancer. Retrospective cohort study of U.S. hospitals with palliative care programs that participated in the National Palliative Care Registry for the years 2018-2019. Patients age ≥ 65 who died with metastatic cancer, matched in a 1:2 ratio on the propensity to receive specialist palliative care. Outcomes included binary variables measuring use of chemotherapy in the last 14 days of life, use of intensive care unit (ICU) in the last 30 days of life, use of hospice, and hospice enrollment ≥ 3 days. Cox proportional hazards regression was used to assess the impact of specialist palliative care on outcomes. After matching, our cohort consisted of 15,878 exposed and 31,756 unexposed patients. Patients exposed to palliative care had lower rates of chemotherapy (1.5% vs. 3.0%) and ICU use (12.2% vs. 14.9%), and higher rates of hospice use (78.2% vs. 61.5%) and hospice enrollment for ≥3 days (72.2% vs. 51.0%). Receipt of specialist palliative care was associated with a decrease in use of chemotherapy in the last 14 days of life (adjusted hazard ratio (aHR) 0.59 [0.50-0.70]) and ICU within the last 30 days of life (aHR 0.86 [0.80-0.92], as well as an increase in hospice use (aHR 1.92 [1.85-1.99]) and hospice enrollment for ≥3 days (aHR 2.00 [1.93-2.07]). On a population-level, use of specialist palliative care was associated with improved metrics for quality end-of-life care for patients dying with metastatic cancer. These findings underscore the importance of integrating specialist palliative care into the care of patients with cancer. Palliative care in oncology/Hospice [ABSTRACT FROM AUTHOR]