Background Dementia is a leading cause of death in the United States but is underrecognized as a terminal illness. The clinical course of nursing home residents with advanced dementia has not been well described. Methods We followed 323 nursing home residents with advanced dementia and their health care proxies for 18 months in 22 nursing homes. Data were collected to characterize the residents’ survival, clinical complications, symptoms, and treatments and to determine the proxies’ understanding of the residents’ prognosis and the clinical complications expected in patients with advanced dementia. Results Over a period of 18 months, 54.8% of the residents died. The probability of pneumonia was 41.1%; a febrile episode, 52.6%; and an eating problem, 85.8%. After adjustment for age, sex, and disease duration, the 6-month mortality rate for residents who had pneumonia was 46.7%; a febrile episode, 44.5%; and an eating problem, 38.6%. Distressing symptoms, including dyspnea (46.0%) and pain (39.1%), were common. In the last 3 months of life, 40.7% of residents underwent at least one burdensome intervention (hospitalization, emergency room visit, parenteral therapy, or tube feeding). Residents whose proxies had an understanding of the poor prognosis and clinical complications expected in advanced dementia were much less likely to have burdensome interventions in the last 3 months of life than were residents whose proxies did not have this understanding (adjusted odds ratio, 0.12; 95% confidence interval, 0.04 to 0.37). Conclusions Pneumonia, febrile episodes, and eating problems are frequent complications in patients with advanced dementia, and these complications are associated with high 6-month mortality rates. Distressing symptoms and burdensome interventions are also common among such patients. Patients with health care proxies who have an understanding of the prognosis and clinical course are likely to receive less aggressive care near the end of life.

Context Over the past century, nursing homes and hospitals increasingly have become the site of death, yet no national studies have examined the adequacy or quality of end-of-life care in institutional settings compared with deaths at home.

Background Despite increasing interest in advance care planning (ACP) and prior ACP descriptions, a consensus definition does not yet exist to guide clinical, research, and policy initiatives. Objective To develop a consensus definition of ACP for adults. Design Delphi Panel Setting/Participants Participants included a multidisciplinary panel of international ACP experts consisting of 52 clinicians, researchers, and policy leaders from 4 countries, and a patient/surrogate advisory committee. Measurements We conducted 10 rounds of a modified Delphi method and qualitatively analyzed panelists’ input. Panelists identified several themes lacking consensus, and iteratively discussed and developed a final consensus definition. Results Panelists identified several tensions concerning ACP concepts such as whether the definition should focus on conversations vs. written advance directives; patients’ values vs. treatment preferences; current shared decision making vs. future medical decisions; and who should be included in the process. The panel achieved a final consensus one-sentence definition and accompanying goals statement: “Advance care planning is a process that supports adults at any age or stage of health in understanding and sharing their personal values, life goals, and preferences regarding future medical care. The goal of advance care planning is to help ensure that people receive medical care that is consistent with their values, goals and preferences during serious and chronic illness.” The panel also described strategies to best support adults in ACP. Conclusions A multidisciplinary Delphi panel developed a consensus definition for ACP for adults that can be used to inform implementation and measurement of ACP clinical, research, and policy initiatives.

Nursing home care is currently a two-tiered system. The lower tier consists of facilities housing mainly Medicaid residents and, as a result, has very limited resources. The nearly 15 percent of U.S. nonhospital-based nursing homes that serve predominantly Medicaid residents have fewer nurses, lower occupancy rates, and more health-related deficiencies. They are more likely to be terminated from the Medicaid/Medicare program, are disproportionately located in the poorest counties, and are more likely to serve African-American residents than are other facilities. The public reporting of quality indicators, intended to improve quality through market mechanisms, may result in driving poor homes out of business and will disproportionately affect nonwhite residents living in poor communities. This article recommends a proactive policy stance to mitigate these consequences of quality competition.T hose writing on the quality of nursing home care have, for the most part, framed the discussion in terms of its uniformly poor quality and have largely ignored the prospects and implications of a two-tiered system differentiated by quality. In contrast, our article provides evidence of a two-tiered system of nursing home care. The lower tier consists of facilities with high proportions of Medicaid residents and, as a result, very limited resources. Thus, stratification affects the number, type, and quality of services provided to residents of lower-tier facilities, who are disproportionately poor and from minority

BACKGROUND Health care transitions in the last months of life can be burdensome and potentially of limited clinical benefit for patients with advanced cognitive and functional impairment. METHODS To examine health care transitions among Medicare decedents with advanced cognitive and functional impairment who were nursing home residents 120 days before death, we linked nationwide data from the Medicare Minimum Data Set and claims files from 2000 through 2007. We defined patterns of transition as burdensome if they occurred in the last 3 days of life, if there was a lack of continuity in nursing homes after hospitalization in the last 90 days of life, or if there were multiple hospitalizations in the last 90 days of life. We also considered various factors explaining variation in these rates of burdensome transition. We examined whether there was an association between regional rates of burdensome transition and the likelihood of feeding-tube insertion, hospitalization in an intensive care unit (ICU) in the last month of life, the presence of a stage IV decubitus ulcer, and hospice enrollment in the last 3 days of life. RESULTS Among 474,829 nursing home decedents, 19.0% had at least one burdensome transition (range, 2.1% in Alaska to 37.5% in Louisiana). In adjusted analyses, blacks, Hispanics, and those without an advance directive were at increased risk. Nursing home residents in regions in the highest quintile of burdensome transitions (as compared with those in the lowest quintile) were significantly more likely to have a feeding tube (adjusted risk ratio, 3.38), have spent time in an ICU in the last month of life (adjusted risk ratio, 2.10), have a stage IV decubitus ulcer (adjusted risk ratio, 2.28), or have had a late enrollment in hospice (adjusted risk ratio, 1.17). CONCLUSIONS Burdensome transitions are common, vary according to state, and are associated with markers of poor quality in end-of-life care. (Funded by the National Institute on Aging.)

Importance A recent Centers for Disease Control and Prevention report found that more persons die at home. This has been cited as evidence that persons dying in the United States are using more supportive care. Objective To describe changes in site of death, place of care, and health care transitions between 2000, 2005, and 2009. Design, Setting, and Patients Retrospective cohort study of a random 20% sample of fee-for-service Medicare beneficiaries, aged 66 years and older, who died in 2000 (n=270 202), 2005 (n=291 819), or 2009 (n=286 282). A multivariable regression model examined outcomes in 2000 and 2009 after adjustment for sociodemographic characteristics. Based on billing data, patients were classified as having a medical diagnosis of cancer, chronic obstructive pulmonary disease, or dementia in the last 180 days of life. Main Outcome Measures Site of death, place of care, rates of health care transitions, and potentially burdensome transitions (eg, health care transitions in the last 3 days of life). Results Comparing 2000, 2005, and 2009 shows a decrease in deaths in acute care hospitals and increases in intensive care unit (ICU) use in the last 30 days, hospice use at the time of death, and health care transitions at the end of the life (test of trend P < .001 for each). 200020052009No. of decedents270 202291 819286 282Deaths in acute care hospitals, % (95% CI)32.6 (32.4–32.8)26.9 (26.7–27.1)24.6 (24.5–24.8)ICU use in last month of life, % (95% CI)24.3 (24.1–24.5)26.3 (26.1–26.5)29.2 (29.0–29.3)Hospice use at time of death, % (95% CI)21.6 (21.4–21.7)32.3 (32.1–32.5)42.2 (42.0–42.4)Health care transitions in last 90 d of life per decedent, mean (median) (IQR)2.1 (1.0) (0–3.0)2.8 (2.0) (1.0–4.0)3.1 (2.0) (1.0–5.0)Health care transitions in last 3 days of life, % (95% CI)10.3 (10.1–10.4)12.4 (12.3–12.5)14.2 (14.0–14.3) In 2009, 28.4% (95% CI, 27.9%–28.5%) of hospice use at the time of death was for 3 days or less. Of these late hospice referrals, 40.3% (95% CI, 39.7%–40.8%) were preceded by hospitalization with an ICU stay. Conclusion and Relevance Among Medicare beneficiaries who died in 2009 and 2005 compared with 2000, a lower proportion died in an acute care hospital, although both ICU use and the rate of health care transitions increased in the last month of life.

Bereaved family member report of completion of an AD was associated with greater use of hospice and fewer reported concerns with communication, yet important opportunities remain to improve the quality of end-of-life care.

The majority of older Americans whose underlying cause of death is attributable to dementia on their death certificate die in nursing homes. State-level factors, including the availability of hospital and nursing home beds and the age of decedents in the population, explain, in part, the wide state-to-state variability in the proportion of dementia-related deaths occurring in the hospital.