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.

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.

In 2015 an estimated 2.7 million people in the United States (1 percent of the population) died. Although decedents' illness experience varies substantially, important trends in care at the end of life are evident. To identify the most pressing health care policy issues related to end-of-life care, we present a comprehensive picture of the epidemiology and care patterns of people in the last stage of life. We identify three key trends in end-of-life care: increasing diversity in the primary diagnoses of decedents, increases in multimorbidity and illness complexity among people with terminal illnesses, and shifts in patterns of care at the end of life and in sites of death. This changing epidemiology of those in the last phase of life puts new pressures on the Medicare hospice benefit to ensure the availability of high-quality end-of-life care. In addition, health care policy makers must grapple with the fact that even with increasing use of hospice care, care intensity increases at the end of life. We highlight and discuss tensions that must be managed to ensure that high-quality care is accessible for people at the end of life.

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 (one week or less) hospice enrollment, 2) very long (more than 6 months) 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 U.S. 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 (one week or less, 32.4%) or very long (more than 6 months, 13.9%) hospice enrollment or disenrolled from hospice prior to death (10.6%). This represents an increase of 4.9 percentage points from 2000. In multivariable analysis, patients with non-cancer 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 prior to 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.

Background Patients with dementia form an increasing proportion of those entering hospice care. Little is known about the types of hospices serving patients with dementia and the patterns of hospice use, including timing of hospice disenrollment between patients with and without dementia. Objectives To characterize the hospices that serve patients with dementia, to compare patterns of hospice disenrollment for patients with dementia and without dementia, and to evaluate patient-level and hospice-level characteristics associated with hospice disenrollment. Methods We used data from a 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 and followed until death (84% response rate). Results A total of 7328 patients (4.9%) had a primary diagnosis of dementia. Hospices caring for patients with dementia were more likely to be for-profit, larger sized, provide care for more than 5 years, and serve a large (>30%) percentage of nursing home patients. Patients with dementia were less likely to disenroll from hospice in conjunction with an acute hospitalization or emergency department visit and more likely to disenroll from hospice after long enrollment periods (more than 165 days) as compared with patients without dementia. No significant difference was found between patients with and without dementia for disenrollment after shorter enrollment periods (less than 165 days). In the multivariable analyses, patients were more likely to be disenrolled after 165 days if they were served by smaller hospices and hospices that served a small percentage of nursing home patients. Conclusion Patients with dementia are significantly more likely to be disenrolled from hospice following a long enrollment period compared with patients without dementia. As the number of individuals with dementia choosing hospice care continues to grow, it is critical to address potential barriers to the provision of quality palliative care for this population near the end of life.

Objectives We sought to characterize the number and types of care transitions in the last 6 months of life made by patients who used hospice and examined factors associated with having multiple transitions in care. Design, Setting, and Participants We performed a retrospective cohort study of fee-for-service Medicare beneficiaries, aged 66 years or older who died between July 1, 2011 and December 31, 2011, and were enrolled in hospice at some time during the last 6 months of life. We used hierarchical generalized linear modeling to identify patient, hospice, and regional factors associated with transitions. We also described the sequence of transitions across healthcare settings. Measures Healthcare transitions after hospice enrollment included from/to hospital, skilled nursing facility, home health agency program, hospice, or home without receiving any service above. Results Among 311,090 hospice decedents, 31,675 (10.2%) had at least one transition after hospice enrollment and this varied substantially across the United States. A total of 6.6% of all decedents had more than one transition in care after hospice enrollment, with a range from 2–19 transitions. Among hospice users with transitions, 53.4% were admitted to hospitals, 17.7% were admitted to skilled nursing facilities, 9.6% used home health agencies, and 25.8% had transitions to home without receiving services we examined. In adjusted analyses, decedents who were younger, nonwhite, enrolled in a for-profit or small hospice program, or had less access to hospital-based palliative care had significantly higher odds of having at least one transition. Conclusion A notable proportion of hospice users experience at least one transition in care in the last 6 months of life, suggesting further research on their impact on patients and families is warranted.

A set of barriers and opportunities to PC integration has been identified across Europe, by national associations, offering a barometer against which to check the challenge of integration across countries.

IMPORTANCE Family caregivers of individuals with serious illness are at risk for depressive symptoms and depression. Hospice includes the provision of support services for family caregivers, yet evidence is limited regarding the effect of hospice use on depressive symptoms among surviving caregivers.OBJECTIVE To determine the association between hospice use and depressive symptoms in surviving spouses. DESIGN, SETTING, AND PARTICIPANTSWe linked data from the Health and Retirement Study, a nationally representative longitudinal survey of community-dwelling US adults 50 years or older, to Medicare claims. Participants included a propensity score-matched sample of 1016 Health and Retirement Study decedents with at least 1 serious illness and their surviving spouses interviewed between August 2002 and May 2011. We compared the spouses of individuals enrolled in hospice with the spouses of individuals who did not use hospice, performing our analysis between January 30, 2014, and January 16, 2015.EXPOSURES Hospice enrollment for at least 3 days in the year before death. MAIN OUTCOMES AND MEASURESSpousal depressive symptom scores measured 0 to 2 years after death with the Center for Epidemiologic Studies Depression Scale, which is scored from 0 (no symptoms) to 8 (severe symptoms). RESULTSOf the 1016 decedents in the matched sample, 305 patients (30.0%) used hospice services for 3 or more days in the year before death. Of the 1016 spouses, 51.9% had more depressive symptoms over time (mean [SD] change, 2.56 [1.65]), with no significant difference related to hospice use. A minority (28.2%) of spouses of hospice users had improved Center for Epidemiologic Studies Depression Scale scores compared with 21.7% of spouses of decedents who did not use hospice, although the difference was not statistically significant (P = .06). Among the 662 spouses who were the primary caregivers, 27.3% of spouses of hospice users had improved Center for Epidemiologic Studies Depression Scale scores compared with 20.7% of spouses of decedents who did not use hospice; the difference was not statistically significant (P = .10). In multivariate analysis, the odds ratio for the association of hospice enrollment with improved depressive symptoms after the spouse's death was 1.63 (95% CI, 1.00-2.65). CONCLUSIONS AND RELEVANCEAfter bereavement, depression symptoms increased overall for surviving spouses regardless of hospice use. A modest reduction in depressive symptoms was more likely among spouses of hospice users than among spouses of nonhospice users.