Limited engagement in, yet clear preferences for advance care planning in young-onset dementia: An exploratory interview-study with family caregivers.

BACKGROUND: The significance of advance care planning in dementia is widely acknowledged. Despite the suggestion that younger people with dementia and their family might have distinct needs and preferences in this area, studies on advance care planning in young-onset dementia are absent. AIM: We aim to explore (1) whether family caregivers had already engaged in advance care planning with patients and/ or professionals and the accompanying reasons and (2) family caregivers' preferences for how to ideally engage in the process with patients, family and professionals. DESIGN: A qualitative study was conducted: we analysed semi-structured interviews (n = 15) through the method of constant comparative analysis. SETTING/PARTICIPANTS: We included Flemish family caregivers of persons with young-onset dementia. RESULTS: Plans for the future typically concerned non-medical affairs. Participants' limited engagement in advance care planning was clarified through several reasons: not considering it useful, hindering patient behaviour, adopting a day-to-day attitude, caregivers emotionally protecting themselves and uncertainty about patients' cognitive competence. However, endorsement for advance care planning showed from respondents' preferences that it should be initiated timely, by a third party, and emphasize patients' remaining capacities. Finally, the need for information and high-quality care emerged. CONCLUSION: A gap of knowledge, of information and in care intertwiningly hinder advance care planning. In young-onset dementia, engaging in advance care planning is not an option equally accessible as not doing so. Policy makers, institutions and professionals could reflect on their responsibility in providing these patients and caregivers an actual choice to engage in advance care planning or not.

Medicare Expenditures and Health Care Utilization in a Multiethnic Community-based Population With Dementia From Incidence to Death.

INTRODUCTION: While individuals live with dementia for many years, utilization and expenditures from disease onset through the end-of-life period have not been examined in ethnically diverse samples. METHODS: We used a multiethnic, population-based, prospective study of cognitive aging (Washington Heights-Inwood Columbia Aging Project) linked to Medicare claims to examine total Medicare expenditures and health care utilization among individuals with clinically diagnosed incident dementia from disease onset to death. RESULTS: High-intensity treatment (hospitalizations, life-sustaining procedures) was common and mean Medicare expenditures per year after diagnosis was $69,000. Non-Hispanic blacks exhibited higher spending relative to Hispanics and non-Hispanic whites 1 year after diagnosis. Non-Hispanic blacks had higher total (mean=$205,000) Medicare expenditures from diagnosis to death compared with non-Hispanic whites (mean=$118,000). Hispanics' total expenditures and utilization after diagnosis was similar to non-Hispanic whites despite living longer with dementia. DISCUSSION: Health care spending for patients with dementia after diagnosis through the end-of-life is high and varies by ethnicity.

Associations of Hospice Disenrollment and Hospitalization With Continuous Home Care Provision.

OBJECTIVES: To examine rates of hospice disenrollment and posthospice hospitalization among patients who are enrolled in hospices that provide continuous home care (CHC) (CHC hospices) compared with patients who are enrolled in hospices that do not offer CHC (non-CHC hospices). METHODS: We performed a retrospective cohort study among Medicare fee-for-service decedents between July and December 2011, who were 66 years and older and had used hospice in their last 6 months of life. We used propensity score matching to account for potential confounding characteristics of hospices. Generalized estimating equation models were applied to estimate between CHC hospices and non-CHC hospices the associations of hospice disenrollment/hospitalization, adjusted for patient characteristics. We also conducted subgroup analyses to examine how the association might have differed by hospice size, and by the percentage of enrollees who received CHC. RESULTS: After matching, we identified 936 pairs of CHC and non-CHC hospices, well balanced in terms of organizational characteristics. In fully adjusted models, compared with non-CHC hospices, CHC hospices had significantly lower disenrollment rates (adjusted rate ratio, 0.73; 95% confidence interval, 0.60-0.87), and lower hospitalization rates (adjusted rate ratio, 0.79; 95% confidence interval, 0.66-0.95). These associations were significantly more pronounced among larger hospices (those with >175 enrollees during study period), and among hospices in which at least 7.3% of enrollees used CHC. CONCLUSIONS: CHC hospices had significantly lower rates of hospice disenrollment and posthospice hospitalization, suggesting CHC service available may enable higher quality of end-of-life care.

The Impact of Reported Hospice Preferred Practices on Hospital Utilization at the End of Life.

BACKGROUND: The Affordable Care Act requires hospices to report quality measures across a range of processes and practices. Yet uncertainties exist regarding the impact of hospice preferred practices on patient outcomes. OBJECTIVE: Assess the impact of 6 hospice preferred practices and hospice organizational characteristics on hospital utilization and death using the first national data on hospice preferred practices. DESIGN: Longitudinal cohort study (2008-2011) of Medicare beneficiaries (N=149,814) newly enrolled in a national random sample of hospices (N=577) from the National Hospice Survey (84% response rate) and followed until death. OUTCOME MEASURES: The proportion of patients at each hospice admitted to the hospital, emergency department (ED), and intensive care unit (ICU), and who died in the hospital after hospice enrollment. RESULTS: Hospices that reported assessing patient preferences for site of death at admission had lower odds of being in the highest quartile for hospital death (AOR=0.36; 95% CI, 0.14-0.93) and ED visits (AOR=0.27; 95% CI, 0.10-0.76). Hospices that reported more frequently monitoring symptoms had lower odds of being in the highest quartile for ICU stays (AOR=0.48; 95% CI, 0.24-0.94). In adjusted analyses, a higher proportion of patients at for-profit compared with nonprofit hospices experienced a hospital admission (15.3% vs. 10.9%, P<0.001), ED visit (21.8% vs. 15.6%, P<0.001), and ICU stay (5.1% vs. 3.0%, P<0.001). CONCLUSIONS: Hospitalization of patients following hospice enrollment varies substantially across hospices. Two of the 6 preferred practices examined were associated with hospitalization rates and for-profit hospices had persistently high hospitalization rates regardless of preferred practice implementation.

End-of-Life Care Intensity and Hospice Use: A Regional-level Analysis.

OBJECTIVES: Despite increased hospice use over the last decade, end-of-life care intensity continues to increase. To understand this puzzle, we sought to examine regional variation in intensive end-of-life care and determine its associations with hospice use patterns. METHODS: Using Medicare claims for decedents aged 66 years and above in 2011, we assessed end-of-life care intensity in the last 6 months of life across hospital referral regions (HRRs) as measured by proportion of decedents per HRR experiencing hospitalization, emergency department use, intensive care unit (ICU) admission, and number of days spent in hospital (hospital-days) and ICU (ICU-days). Using hierarchical generalized linear models and adjusting for patient characteristics, we examined whether these measures were associated with overall hospice use, very short (≤7 d), medium (8-179 d), or very long (≥180 d) hospice enrollment, focusing on very short stay. RESULTS: End-of-life care intensity and hospice use patterns varied substantially across HRRs. Regional-level end-of-life care intensity was positively correlated with very short hospice enrollment. Comparing HRRs in the highest versus the lowest quintiles of intensity in end-of-life care, regions with more intensive care had higher rates of very short hospice enrollment, with adjusted odds ratios (AOR) 1.14 [99% confidence interval (CI), 1.04-1.25] for hospitalization; AOR, 1.23 (CI, 1.12-1.36) for emergency department use; AOR, 1.25 (CI, 1.14-1.38) for ICU admission; AOR, 1.10 (CI, 1.00-1.21) for hospital-days; and AOR, 1.20 (CI, 1.08-1.32) for ICU-days. CONCLUSIONS: At the regional level, increased end-of-life care intensity was consistently associated with very short hospice use.

Education, implementation, and policy barriers to greater integration of palliative care: A literature review.

BACKGROUND: Early integration of palliative care into the management of patients with serious disease has the potential to both improve quality of life of patients and families and reduce healthcare costs. Despite these benefits, significant barriers exist in the United States to the early integration of palliative care in the disease trajectory of individuals with serious illness. AIM: To provide an overview of the barriers to more widespread palliative care integration in the United States. DESIGN AND DATA SOURCES: A literature review using PubMed from 2005 to March 2015 augmented by primary data collected from 405 hospitals included in the Center to Advance Palliative Care's National Palliative Care Registry for years 2012 and 2013. We use the World Health Organization's Public Health Strategy for Palliative Care as a framework for analyzing barriers to palliative care integration. RESULTS: We identified key barriers to palliative care integration across three World Health Organization domains: (1) education domain: lack of adequate education/training and perception of palliative care as end-of-life care; (2) implementation domain: inadequate size of palliative medicine-trained workforce, challenge of identifying patients appropriate for palliative care referral, and need for culture change across settings; (3) policy domain: fragmented healthcare system, need for greater funding for research, lack of adequate reimbursement for palliative care, and regulatory barriers. CONCLUSION: We describe the key policy and educational opportunities in the United States to address and potentially overcome the barriers to greater integration of palliative care into the healthcare of Americans with serious illness.

Has Hospice Use Changed? 2000-2010 Utilization Patterns.

BACKGROUND: Hospice use has increased substantially during the past decade by an increasingly diverse patient population; however, little is known about patterns of hospice use and how these patterns have changed during the past decade. OBJECTIVE: To characterize Medicare hospice users in 2000 and 2010 and estimate the prevalence of (1) very short (≤1 wk) hospice enrollment; (2) very long (>6 mo) hospice enrollment; and (3) hospice disenrollment and how these utilization patterns have varied over time and by patient and hospice characteristics. RESEARCH DESIGN: Cross-sectional analysis of Medicare hospice claims data from 2000 and 2010. SUBJECTS: All US Medicare Hospice Benefit enrollees in 2000 (N=529,573) and 2010 (N=1,150,194). RESULTS: As of 2010, more than half (53.4%) of all Medicare decedents who used hospice had either very short (≤1 wk, 32.4%) or very long (>6 mo, 13.9%) hospice enrollment or disenrolled from hospice before death (10.6%). This represents an increase of 4.9 percentage points from 2000. In multivariable analysis, patients with noncancer diagnoses, the fastest growing group of hospice users, were approximately twice as likely as those with cancer to have very short or long enrollment periods and to disenroll from hospice. CONCLUSION: The substantial proportion of hospice users with very short or long enrollment, or enrollments that end before death, underscores the potential for interventions to improve the timing and appropriateness of hospice referral so that the full benefits of hospice are received by patients and families.

The Myth Regarding the High Cost of End-of-Life Care.

Health care reform debate in the United States is largely focused on the highly concentrated health care costs among a small proportion of the population and policy proposals to identify and target this "high-cost" group. To better understand this population, we conducted an analysis for the Institute of Medicine Committee on Approaching Death using existing national data sets, peer-reviewed literature, and published reports. We estimated that in 2011, among those with the highest costs, only 11% were in their last year of life, and approximately 13% of the $1.6 trillion spent on personal health care costs in the United States was devoted to care of individuals in their last year of life. Public health interventions to reduce health care costs should target those with long-term chronic conditions and functional limitations.

Perspectives on Transfusions for Hospice Patients With Blood Cancers: A Survey of Hospice Providers.

CONTEXT: Patients with blood cancers have low rates of hospice use. While lack of transfusion access in hospice is posited to substantially contribute to these low rates, little is known about the perspectives of hospice providers regarding transfusion access in hospice. OBJECTIVES: To characterize hospice providers' perspectives regarding care for patients with blood cancers and transfusions in the hospice setting. METHODS: In 2022, we conducted a cross-sectional survey of a sample of hospices in the United States regarding their experience caring for patients with blood cancers, perceived barriers to hospice use, and interventions to increase enrollment. RESULTS: We received 113 completed surveys (response rate = 23.5%). Of the cohort, 2.7% reported that their agency always offers transfusions, 40.7% reported sometimes offering transfusions, and 54.9% reported never offering transfusions. In multivariable analyses, factors associated with offering transfusions included nonprofit ownership (OR 5.93, 95% CI, 2.2-15.2) and daily census >50 patients (OR 3.06, 95% CI, 1.19-7.87). Most respondents (76.6%) identified lack of transfusion access in hospice as a barrier to hospice enrollment for blood cancer patients. The top intervention considered as "very helpful" for increasing enrollment was additional reimbursement for transfusions (72.1%). CONCLUSION: In this national sample of hospices, access to palliative transfusions was severely limited and was considered a significant barrier to hospice use for blood cancer patients. Moreover, hospices felt increased reimbursement for transfusions would be an important intervention. These data suggest that hospice providers are supportive of increasing transfusion access and highlight the critical need for innovative hospice payment models to improve end-of-life care for patients with blood cancers.

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.

Examining annual transitions in healthcare spending among U.S. medicare beneficiaries using multistate Markov models: Analysis of medicare current beneficiary survey data, 2003-2019.

Many studies have examined factors associated with individuals of high or low healthcare spending in a given year. However, few have studied how healthcare spending changes over multiple years and which factors are associated with the changes. In this study, we examined the dynamic patterns of healthcare spending over a three-year period, among a nationally representative cohort of Medicare beneficiaries in the U.S. and identified factors associated with these patterns. We extracted data for 30,729 participants from the national Medicare Current Beneficiary Survey (MCBS), for the period 2003-2019. Using multistate Markov (MSM) models, we estimated the probabilities of year-to-year transitions in healthcare spending categorized as three states (low (L), medium (M) and high (H)), or to the terminal state, death. The participants, 13,554 (44.1%), 13,715 (44.6%) and 3,460 (11.3%) were in the low, medium and high spending states at baseline, respectively. The majority of participants remained in the same spending category from one year to the next (L-to-L: 76.8%; M-to-M: 71.7%; H-to-H: 56.6 %). Transitions from the low to high spending state were significantly associated with older age (75-84, ≥85 years), residing in a long-term care facility, greater assistance with activities of daily living, enrollment in fee-for-service Medicare, not receiving a flu shot, and presence of specific medical conditions, including cancer, dementia, and heart disease. Using data from a large population-based longitudinal survey, we have demonstrated that MSM modelling is a flexible framework and useful tool for examining changes in healthcare spending over time.

Care Disruptions and End-Of-Life Care Experiences Among Home-Based Primary Care Patients During the COVID-19 Pandemic in New York City: A Retrospective Chart Review.

Background: Research on deaths during COVID-19 has largely focused on hospitals and nursing homes. Less is known about medically complex patients receiving care in the community. We examined care disruptions and end-of-life experiences of homebound patients receiving home-based primary care (HBPC) in New York City during the initial 2020 COVID-19 surge. Methods: We conducted a retrospective chart review of patients enrolled in Mount Sinai Visiting Doctors who died between March 1-June 30, 2020. We collected patient sociodemographic and clinical data and analyzed care disruptions and end-of-life experiences using clinical notes, informed by thematic and narrative analysis. Results: Among 1300 homebound patients, 112 (9%) died during the study period. Patients who died were more likely to be older, non-Hispanic white, and have dementia than those who survived. Thirty percent of decedents had confirmed or probable COVID-19. Fifty-eight (52%) were referred to hospice and 50 enrolled. Seventy-three percent died at home. We identified multiple intersecting disruptions in family caregiving, paid caregiving, medical supplies and services, and hospice care, as well as hospital avoidance, complicating EOL experiences. The HBPC team responded by providing clinical, logistical and emotional support to patients and families. Conclusion: Despite substantial care disruptions, the majority of patients in our study died at home with support from their HBPC team as the practice worked to manage care disruptions. Our findings suggest HBPC's multi-disciplinary, team-based model may be uniquely suited to meet the needs of the most medically and socially vulnerable older adults at end of life during public health emergencies.

The devil's in the details: Variation in estimates of late-life activity limitations across national cohort studies.

BACKGROUND: Assessing activity limitations is central to aging research. However, assessments of activity limitations vary, and this may have implications for the populations identified. We aim to compare measures of activities of daily living (ADLs) and their resulting prevalence and mortality across three nationally-representative cohort studies: the National Health and Aging Trends Study (NHATS), the Health and Retirement Survey (HRS), and the Medicare Current Beneficiary Survey (MCBS). METHODS: We compared the phrasing and context of questions around help and difficulty with six self-care activities: eating, bathing, toileting, dressing, walking inside, and transferring. We then compared the prevalence and 1-year mortality for difficulty and help with eating and dressing. RESULTS: NHATS, HRS, and MCBS varied widely in phrasing and framing of questions around activity limitations, impacting the proportion of the population found to experience difficulty or receive help. For example, in NHATS 12.4% [95% confidence interval (CI) 11.5%-13.4%] of the cohort received help with dressing, while in HRS this figure was 6.4% [95% CI 5.7%-7.2%] and MCBS 5.3% [95% CI 4.7%-5.8%]. When combined with variation in sampling frame and survey approach of each survey, such differences resulted in large variation in estimates of the older population of older adults with ADL disability. CONCLUSIONS: In order to take late-life activity limitations seriously, we must clearly define the measures we use. Further, researchers and clinicians seeking to understand the experience of older adults with activity limitations should be careful to interpret findings in light of the framing of the question asked.

Functional and clinical needs of older hospice enrollees with coexisting dementia.

BACKGROUND: The Medicare Hospice Benefit increasingly serves people dying with dementia. We sought to understand characteristics, hospice use patterns, and last-month-of-life care quality ratings among hospice enrollees with dementia coexisting with another terminal illness as compared to enrollees with a principal hospice diagnosis of dementia, and enrollees with no dementia. METHODS: We conducted a pooled cross-sectional study among decedent Medicare beneficiaries age 70+ using longitudinal data from the National Health and Aging Trends Study (NHATS) (last interview before death; after-death proxy interview) linked to Medicare hospice claims (2011-2017). We used unadjusted and adjusted regression analyses to compare characteristics of hospice enrollees with coexisting dementia to two groups: (1) enrollees with a principal dementia diagnosis, and (2) enrollees with no dementia. RESULTS: Among 1105 decedent hospice enrollees age 70+, 40% had coexisting dementia, 16% had a principal diagnosis of dementia, and 44% had no dementia. In adjusted analyses, enrollees with coexisting dementia had high rates of needing help with 3-6 activities of daily living, similar to enrollees with principal dementia (62% vs. 67%). Enrollees with coexisting dementia had high clinical needs, similar to those with no dementia, for example, 63% versus 61% had bothersome pain. Care quality was worse for enrollees with coexisting dementia versus principal dementia (e.g., 61% vs. 79% had anxiety/sadness managed) and similar to those with no dementia. Enrollees with coexisting dementia had similar hospice use patterns as those with principal diagnoses and higher rates of problematic use patterns compared to those with no dementia (e.g., 16% vs. 10% live disenrollment, p = 0.004). CONCLUSIONS: People with coexisting dementia have functional needs comparable to enrollees with principal diagnoses of dementia, and clinical needs comparable to enrollees with no dementia. Changes to hospice care models and policy may be needed to ensure appropriate dementia care.

Disruptions in Home Hospice Care due to the COVID-19 Pandemic.

Background: There is limited evidence regarding the challenges of providing hospice care to those dying at home during the COVID-19 pandemic. Objective: To describe the challenges of home hospice care and the specific types of disruptions in care processes experienced by patients and families. Design: Qualitative study of the electronic medical record notes of a large New York City (NYC) home-based primary care program. Setting/Subjects: Subjects were 58 patients referred to hospice who died during the initial NYC COVID-19 surge from March to June 2020. Results: We identified six domains of disruptions in home hospice care: delayed hospice enrollment, inability to conduct home visits, lack of needed supplies, communication failures, strained caregivers, and limitations of telehealth. Conclusions: This study provides a critical first analysis of disruptions in home hospice care that can feasibly be addressed and must be prioritized by hospices throughout the ongoing pandemic and in advance of future emergencies.

Hospice Quality, Race, and Disenrollment in Hospice Enrollees With Dementia.

Background: Racial and ethnic minoritized people with dementia (PWD) are at high risk of disenrollment from hospice, yet little is known about the relationship between hospice quality and racial disparities in disenrollment among PWD. Objective: To assess the association between race and disenrollment between and within hospice quality categories in PWD. Design/Setting/Subjects: Retrospective cohort study of 100% Medicare beneficiaries 65+ enrolled in hospice with a principal diagnosis of dementia, July 2012-December 2017. Race and ethnicity (White/Black/Hispanic/Asian and Pacific Islander [AAPI]) was assessed with the Research Triangle Institute (RTI) algorithm. Hospice quality was assessed with the publicly-available Consumer Assessment of Healthcare Providers and Systems (CAHPS) survey item on overall hospice rating, including a category for hospices exempt from public reporting (unrated). Results: The sample included 673,102 PWD (mean age 86, 66% female, 85% White, 7.3% Black, 6.3% Hispanic, 1.6% AAPI) enrolled in 4371 hospices nationwide. Likelihood of disenrollment was higher in hospices in the lowest quartile of quality ratings (vs. highest quartile) for both White (adjusted odds ratio [AOR] 1.12 [95% confidence interval 1.06-1.19]) and minoritized PWD (AOR range 1.2-1.3) and was substantially higher in unrated hospices (AOR range 1.8-2.0). Within both low- and high-quality hospices, minoritized PWD were more likely to be disenrolled compared with White PWD (AOR range 1.18-1.45). Conclusions: Hospice quality predicts disenrollment, but does not fully explain disparities in disenrollment for minoritized PWD. Efforts to improve racial equity in hospice should focus both on increasing equity in access to high-quality hospices and improving care for racial minoritized PWD in all hospices.

Transitions from Home Health to Hospice: The Role of Agency Affiliation.

Background: Home health agencies (HHAs) are often affiliated with hospice agencies and commonly care for patients with serious illness within the Medicare program. HHAs may therefore provide a potential opportunity to facilitate timely referral to hospice when appropriate. Objectives: To determine if patients cared for by HHAs affiliated with hospice agencies experience differential hospice use and care patterns. Design: Nationally representative cohort study. Setting/Subjects: 1431 decedents in the 2002 to 2017 Medicare Current Beneficiary Survey who received home health in the last year of life in the United States. Measurements: Primary independent variable was HHA hospice affiliation. Primary dependent variable was hospice enrollment; secondary dependent variables were hospice live discharge and length of stay. Results: The 27.3% of decedents cared for by a HHA affiliated with a hospice had greater education levels and wealth and were more likely to live in the Midwest and Northeast. In adjusted models, HHA-hospice affiliated decedents had greater odds of enrolling in hospice compared to those cared for by HHAs not affiliated with a hospice, corresponding to a hospice enrollment rate of 51.0% for those cared for by HHAs affiliated with hospices versus 39.7% for HHAs not affiliated (p = 0.004). There were no differences in hospice length of stay or live discharge rate by hospice affiliation. Conclusion: Medicare beneficiaries cared for by HHAs affiliated with hospices are more likely to enroll in hospice at the end of life. This has implications for improving hospice access through home health incentives and models of care.