Place of Death for Adults Receiving Specialist Palliative Care in Their Last 3 Months of Life: Factors Associated With Preferred Place, Actual Place, and Place of Death Congruence.

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.

Health Care Costs Associated With Hospice Use For People With Dementia In The US.

Policy makers in the US are increasingly concerned that greater use of the Medicare hospice benefit by people with dementia is driving up costs. Yet this perspective fails to incorporate potential cost savings associated with hospice. We estimated the association between hospice use by people with dementia and health care costs, using Medicare Current Beneficiary Survey data from the period 2002-19. For community-dwelling people with dementia, Medicare costs were lower for those who used hospice than for those who did not, whether hospice enrollment was in the last three days ($2,200) or last three months ($7,200) of life, primarily through lower inpatient care costs in the last days of life. In nursing homes, total and Medicare costs were lower for hospice users with dementia who enrolled within a month of death than for those who did not use hospice. Total costs for the entire last year of life for those who used any days of hospice in the last year compared with no hospice did not differ, although Medicare costs were higher and Medicaid costs lower for those in nursing homes. Medicare policies that reduce hospice access and incentivize hospice disenrollment may actually increase Medicare costs, given that hospice cost savings generally derive from a person's last days or weeks of life.

Paid Care for People with Functional Impairment and Serious Illness: Results from the Health and Retirement Study.

BACKGROUND: Paid caregivers (e.g., home health aides) care for individuals living at home with functional impairment and serious illnesses (health conditions with high risk of mortality that impact function and quality of life). OBJECTIVE: To characterize those who receive paid care and identify factors associated with receipt of paid care in the context of serious illness and socioeconomic status. DESIGN: Retrospective cohort study. PARTICIPANTS: Community-dwelling participants ≥ 65 years enrolled in the Health and Retirement Study (HRS) between 1998 and 2018 with new-onset functional impairment (e.g., bathing, dressing) and linked fee-for-service Medicare claims (n = 2521). MAIN MEASURES: Dementia was identified using HRS responses and non-dementia serious illness (e.g., advanced cancer, end-stage renal disease) was identified using Medicare claims. Paid care support was identified using HRS survey report of paid help with functional tasks. KEY RESULTS: While about 27% of the sample received paid care, those with both dementia and non-dementia serious illnesses in addition to functional impairment received the most paid care (41.7% received ≥ 40 h of paid care per week). In multivariable models, those with Medicaid were more likely to receive any paid care (p < 0.001), but those in the highest income quartile received more hours of paid care (p = 0.05) when paid care was present. Those with non-dementia serious illness were more likely to receive any paid care (p < 0.001), but those with dementia received more hours of care (p < 0.001) when paid care was present. CONCLUSIONS: Paid caregivers play a significant role in meeting the care needs of those with functional impairment and serious illness and high paid care hours are common among those with dementia in particular. Future work should explore how paid caregivers can collaborate with families and healthcare teams to improve the health and well-being of the seriously ill throughout the income spectrum.

An Update: National Institutes of Health Research Funding for Palliative Medicine 2016-2020.

Background: The evidence base to support palliative care clinical practice is inadequate and opportunities to improve the evidence base remain despite the field's rapid growth. Objective: The aim of this study was to examine current National Institutes of Health (NIH) funding of palliative medicine research and trends over time. Design: We sought to identify NIH funding of palliative medicine (2016-2020) in two stages: (1) we searched the NIH grant database, RePORTER, for grants with the keywords, "palliative care," "end-of-life care," "hospice," and "end of life," and (2) identified palliative care researchers likely to have secured NIH funding using three strategies. Methods: We abstracted (1) the first and last authors' names from original investigations published in major palliative medicine journals from 2016 to 2018; (2) names from a PubMed-generated list of original articles published in major medicine, nursing, and subspecialty journals using the above keywords; and (3) palliative medicine journal editorial board members and members of key palliative medicine initiatives. We cross-matched the pooled names against NIH grants funded from 2016 to 2021. Results: A crosswalk analysis of the author search and NIH RePORTER search identified 1658 grants. Of those, 541 were categorized as relevant to palliative medicine, which represented 419 unique principal investigators (mean of 1.34 grants per investigator). Compared with 2011-2015, the number of NIH-funded grants increased by 25%, NIH dollars increased by 35%, and the distribution of grant types remained stable. Conclusions: Despite the challenging NIH funding climate, the number of NIH grants and funding to palliative care have increased. Given the increased funding allocation toward Alzheimer's dementia and related dementia research at the congressional level, this increase in funding reflects this funding allocation and does not represent overall growth. Dedicated federal funding for palliative care research remains critical to grow the evidence base for persons living with serious illnesses and their families.

Receipt of Hospice Aide Visits Among Medicare Beneficiaries Receiving Home Hospice Care.

CONTEXT: Hospice aides provide essential direct care to hospice patients, yet there is minimal research examining hospice aide visits. OBJECTIVES: describe the prevalence and frequency of hospice aide visits, and 2) evaluate patient, community, and hospice characteristics associated with these visits. METHODS: Longitudinal cohort study of Medicare Current Beneficiary Survey (MCBS) participants who died between 2010-2018 and received routine hospice care in the 6 months prior to death (n = 674). We characterized prevalence and frequency of hospice aide visits over time and used generalized linear modelling to identify factors associated with visits. RESULTS: 64% of hospice enrollees received hospice aide visits and average visit frequency (1.3 per week) remained stable throughout enrollment. The only patient characteristic associated with receipt of hospice aide visits was primary hospice diagnosis (respiratory diagnosis vs. dementia: OR 0.372, P = 0.040). Those living in community-based residential housing and those cared for by hospices with aides employed as staff were more likely to receive any hospice aide visits (OR 2.331, P = 0.047 and OR 4.612, P = 0.002, respectively.) CONCLUSION: Hospice aide visits are a common component of hospice care, but visit frequency does not increase as death approaches. Receipt of hospice aide visits was primarily associated with community and hospice agency (rather than patient) characteristics. Future work is needed to ensure that hospice aides are integrated in the hospice interdisciplinary team and that access to hospice aide visits is meaningfully driven by patient and family needs, rather than the practice norms and business models of individual hospice agencies.

Expanding the Palliative Care Workforce during the COVID-19 Pandemic: An Evaluation of Core Palliative Care Skills in Health Social Workers.

Background: Meeting the needs of seriously ill SARS-CoV-2 (COVID-19) patients requires novel models of deploying health social workers (SWs) to expand the palliative care workforce. To inform such expansion, understanding the current state of health SWs' core palliative care skills is necessary. Methods: Following minimal training, health SWs in one New York City hospital were surveyed about their frequency, competence, and confidence in using core palliative care skills. Results: Of the 170 health SWs surveyed, 46 (27%) responded, of whom 21 (46%) and 24 (52%) had palliative care training before and during the COVID-19 surge, respectively. Health SWs reported a "moderate improvement" in the use of three skills: "identify a medical decision maker," "assess prognostic understanding," and "coordinate care." There was "minimal decrease" to "no improvement" to "minimal improvement" in competence and confidence of skill use. Conclusion: Our findings suggest that educational initiatives can improve health SWs' use of core palliative care skills.

Associations between informal care costs, care quality, carer rewards, burden and subsequent grief: the international, access, rights and empowerment mortality follow-back study of the last 3 months of life (IARE I study).

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.

Family and Friend Perceptions of Quality of End-of-Life Care in Medicare Advantage vs Traditional Medicare.

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.

QALY-time: experts' view on the use of the quality-adjusted LIFE year in COST-effectiveness analysis in palliative care.

BACKGROUND: The Quality-Adjusted Life Year (QALY) is internationally recognized as standard metric of health outcomes in cost-effectiveness analyses (CEAs) in healthcare. The ongoing debate concerning the appropriateness of its use for decision-making in palliative care has been recently mapped in a review. The aim was to report on and draw conclusions from two expert meetings that reflected on earlier mapped issues in order to reach consensus, and to advise on the QALY's future use in palliative care. METHODS: A nominal group approach was used. In order to facilitate group decision making, three statements regarding the use of the QALY in palliative care were discussed in a structured way. Two groups of international policymakers, healthcare professionals and researchers participated. Data were analysed qualitatively using inductive coding. RESULTS: 1) Most experts agreed that the recommended measurement tool for the QALYs 'Q' component, the EuroQol-5D (EQ-5D), is inappropriate for palliative care. A more sensitive tool, which might be based on the capabilities approach, could be used or developed. 2) Valuation of time should be incorporated in the 'Q' part, leaving the linear clock time in the 'LY' component. 3) Most experts agreed that the QALY, in its current shape, is not suitable for palliative care. CONCLUSIONS: 1) Although the EQ-5D does not suffice, a generic tool is needed for the QALY. As long as no suitable alternative is available, other tools can be used besides or serve as basis for the EQ-5D because of issues in conceptual overlap. 2) Future research should further investigate the valuation of time issue, and how best to integrate it in the 'Q' component. 3) A generic outcome measure of effectiveness is essential to justly allocate healthcare resources. However, experts emphasized, the QALY is and should be one of multiple criteria for choices in the healthcare insurance package.

Economics of Palliative Care for Cancer: Interpreting Current Evidence, Mapping Future Priorities for Research.

The National Cancer Institute estimates that $154 billion will be spent on care for people with cancer in 2019, distributed across the year after diagnosis (31%), the final year of life (31%), and continuing care between those two (38%). Projections of future costs estimate persistent growth in care expenditures. Early research studies on the economics of palliative care have reported a general pattern of cost savings during inpatient hospital admissions and the end-of-life phase. Recent research has demonstrated more complex dynamics, but expanding palliative care capacity to meet clinical guidelines and population health needs seems to save costs. Quantifying these cost savings requires additional research, because there is significant variance in estimates of the effects of treatment on costs, depending on the timing of intervention, the primary diagnosis, and the overall illness burden. Because ASCO guidelines state that palliative care should be provided concurrently with other treatment from the point of diagnosis onward for all metastatic cancer, new and ambitious research is required to evaluate the cost effects of palliative care across the entire disease trajectory. We propose a series of ways to reach the guideline goals.

Drivers of care costs and quality in the last 3 months of life among older people receiving palliative care: A multinational mortality follow-back survey across England, Ireland and the United States.

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.

Homebound Status and the Critical Role of Caregiving Support.

The homebound population relies on both paid and family caregivers to meet their complex care needs. In order to examine the association between intensity of caregiving support and leaving the home, we identified a population of community-dwelling, homebound Medicare beneficiaries age ≥65 (n = 1,852) enrolled in the 2015 National Health and Aging Trends Study and measured the support they received from paid and family caregivers. Those who had ≥20 h of caregiving support per week had 50% less odds of being "exclusively homebound" (rarely or never leave home) (OR 0.56, p < .01). Policies that facilitate increased support for family caregivers and better access to paid caregivers may allow homebound individuals who would otherwise be isolated at home to utilize existing community-based long-term care services and supports.

Living in the Community With Dementia: Who Receives Paid Care?

OBJECTIVES: Paid caregivers (eg, home health aides and personal care attendants) provide hands-on care that helps individuals with dementia live in the community. This study (a) characterizes paid caregiving among community-dwelling individuals with dementia and (b) identifies factors associated with receipt of paid care. DESIGN: Cross-sectional analysis. SETTING: The 2015 National Health and Aging Trends Study (NHATS), a nationally representative study of Medicare recipients aged 65 years and older. PARTICIPANTS: Community-dwelling individuals with dementia (n = 899). MEASUREMENTS: Paid and family caregiving support was determined by participant or proxy report of help received with functional tasks. Multivariable logistic regression was used to examine factors associated with receipt of paid care. NHATS population sampling weights were used to produce national paid caregiving prevalence estimates. RESULTS: Only 25.5% of community-dwelling individuals with dementia received paid care, and 10.8% received 20 hours or more of paid care per week. For those who received it, paid care accounted for approximately half of the 83 total caregiving hours (paid and family) that they received each week. Among the subgroup of individuals with advanced dementia (those with impairment in dressing, bathing, toileting, and managing medications and finances), nearly half (48.3%) received paid care. Multivariable analysis, adjusting for sociodemographic, family caregiving support, functional, and clinical characteristics, found that the odds of receiving paid care were higher among men (odds ratio [OR] = 1.91; 95% confidence interval [CI] = 1.24-2.95), the unmarried (OR = 2.20; 95% CI = 1.31-3.70), those with Medicaid (OR = 2.16; 95% CI = 1.27-3.66), and those requiring more help with activities of daily living (ADLs) (OR = 1.32; 95% CI = 1.18-1.48) and instrumental ADLs (OR = 1.29; 95% CI = 1.14-1.46). CONCLUSIONS: New ways of making paid caregiving more accessible throughout the income spectrum are required to support family caregivers and respect the preferences of individuals with dementia to remain living in the community. J Am Geriatr Soc 68:186-191, 2019.

Economic Analysis of Hospital Palliative Care: Investigating Heterogeneity by Noncancer Diagnoses.

Background. Single-disease-focused treatment and hospital-centric care are poorly suited to meet complex needs in an era of multimorbidity. Understanding variation in palliative care's association with treatment choices is essential to optimizing interdisciplinary decision making in care of complex patients. Aim. To estimate the association between palliative care and hospital costs by primary diagnosis and multimorbidity for adults with one of six life-limiting conditions: heart failure, chronic obstructive pulmonary disease (COPD), liver failure, kidney failure, neurodegenerative conditions including dementia, and HIV/AIDS. Methods. Data from four studies (2002-2015) were pooled to provide an analytic dataset of 73,304 participants with mean costs $10,483, of whom 5,348 (7%) received palliative care. We estimated average effect of palliative care on direct hospital costs among the treated, using propensity scores to control for observed confounding. Results. Palliative care was associated with a statistically significant reduction in total direct costs for heart failure (estimated treatment effect: -$2666; 95% confidence interval [CI]: -$3440 to -$1892), neurodegenerative conditions (-$3523; -$4394 to -$2651), COPD (-$1613; -$2217 to -$1009), kidney failure (-$3589; -$5132 to -$2045), and liver failure (-$7574; -$9232 to -$5916). The association for liver failure patients was statistically significantly larger than for any other disease group. Cost-saving associations were also statistically larger for patients with multimorbidity than single disease for two of the six groups: neurodegenerative and liver failure. Conclusions. Heterogeneity in treatment effect estimates was observable in assessing association between palliative care and hospital costs for adults with serious life-limiting illnesses other than cancer. The results illustrate the importance of careful definition of palliative care populations in research and practice, and raise further questions about the role of interdisciplinary decision making in treatment of complex medical illness.

Beyond Functional Support: The Range Of Health-Related Tasks Performed In The Home By Paid Caregivers In New York.

Paid caregivers (for example, home health aides and personal care attendants) are formally tasked with helping older adults with functional impairment meet their basic needs at home. This study used thirty semistructured interviews with dyads of patients or their proxies and their paid caregivers in New York City to understand the range of health-related tasks that paid caregivers perform in the home and determine whether these tasks are taught in the New York State Department of Health's curriculum. We found that patients, proxies, and paid caregivers all reported that paid caregivers performed a wide range of health-related tasks that were often not part of their formal training. Creating clear competencies for paid caregivers that reflect the full breadth of health-related tasks they may perform in the home could help maximize the positive impact of the paid caregiver workforce on the lives of patients living at home with functional impairment.

Association between the Availability of Hospital-based Palliative Care and Treatment Intensity for Critically Ill Patients.

RATIONALE: In the intensive care unit (ICU), studies involving specialized palliative care services have shown decreases in the use of nonbeneficial life-sustaining therapies and ICU length of stay for patients. However, whether widespread availability of hospital-based palliative care is associated with less frequent use of high intensity care is unknown. OBJECTIVES: To determine whether availability of hospital-based palliative care is associated with decreased markers of treatment intensity for ICU patients. METHODS: Retrospective cohort study of adult ICU patients in New York State hospitals, 2008-2014. Multilevel regression was used to assess the relationship between availability of hospital-based palliative care during the year of admission and hospital length of stay, use of mechanical ventilation, dialysis and artificial nutrition, placement of a tracheostomy or gastrostomy tube, days in ICU and discharge to hospice. RESULTS: Of 1,025,503 ICU patients in 151 hospitals, 814,794 (79.5%) received care in a hospital with a palliative care program. Hospital length of stay was similar for patients in hospitals with and without palliative care programs (6 d [interquartile range, 3-12] vs. 6 d [interquartile range, 3-11]; adjusted rate ratio, 1.04 [95% confidence interval 1.03-1.05]; P < 0.001), as were other healthcare use outcomes. However, patients in hospitals with palliative care programs were 46% more likely to be discharged to hospice than those in hospitals without palliative care programs (1.7% vs. 1.4%; adjusted odds ratio, 1.46 [95% confidence interval 1.30-1.64]; P < 0.001). CONCLUSIONS: The availability of hospital-based palliative care was not associated with differences in in-hospital treatment intensity, but it was associated with significantly increased hospice use for ICU patients. Currently, the measurable benefit of palliative care programs for critically ill patients may be the increased use of hospice facilities, as opposed to decreased healthcare use during an ICU-associated hospitalization.