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.

IMPORTANCE End-of-life care costs are high and decedents often experience poor quality of care. Numerous factors influence changes in site of death, health care transitions, and burdensome patterns of care.OBJECTIVE To describe changes in site of death and patterns of care among Medicare decedents.

Findings suggest that analgesic management of daily pain is better for nursing home residents enrolled in hospice than for those not enrolled in hospice.The prescribing practices portrayed by this study reveal that many dying nursing home residents in daily pain are receiving no analgesic treatment or are receiving analgesic treatment inconsistent with AMDA and other pain management guidelines. Improving the analgesic management of pain in nursing homes is essential if high-quality end-of-life care in nursing homes is to be achieved.

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OBJECTIVES To examine family member's perceptions of decision-making and outcomes of feeding tubes. DESIGN Mortality follow-back survey. Sample weights were used to account for oversampling and survey design. A multivariate model examined the association between feeding tube use and overall quality of care rating regarding the last week of life. SETTING Nursing homes, hospitals, and assisted living facilities. PARTICIPANTS Respondents whose relative had died from dementia in five states with varying feeding tube use. MEASUREMENTS Respondents were asked about discussions, decision-making, and outcomes related to their loved ones’ feeding problems. RESULTS Of 486 family members surveyed, representing 9,652 relatives dying from dementia, 10.8% reported that the decedent had a feeding tube, 17.6% made a decision not to use a feeding tube, and 71.6% reported that there was no decision about feeding tubes. Of respondents for decedents with a feeding tube, 13.7% stated that there was no discussion about feeding tube insertion, and 41.6% reported a discussion that was shorter than 15 minutes. The risks associated with feeding tube insertion were not discussed in one-third of the cases, 51.8% felt that the healthcare provider was strongly in favor of feeding tube insertion, and 12.6% felt pressured by the physician to insert a feeding tube. The decedent was often physically (25.9%) or pharmacologically restrained (29.2%). Respondents whose loved ones died with a feeding tube were less likely to report excellent end-of-life care (adjusted odds ratio = 0.42, 95% confidence interval = 0.18–0.97) than those who were not. CONCLUSION Based on the perceptions of bereaved family members, important opportunities exist to improve decision-making in feeding tube insertion.

Objective. To examine the patient, nursing home (NH), hospice provider, and local market factors associated with the selection of the Medicare hospice benefit by eligible NH residents, and evaluate the causal effect of hospice on end-of-life hospitalization rates. Data Sources/Study Setting. Secondary data for 1995-1997 for NH residents. Study Design. This retrospective cohort study includes NH residents in five states (Kansa, Maine, New York, Ohio, South Dakota) who died in the years 1995-1997. Medicare claims identified hospice enrollment and hospitalizations. Geocoding of NHs, hospice providers, and hospitals was used to identify local markets. The two outcome measures are hospice enrollment and hospitalization of NH residents in their last 30 days of life. Data Collection/Extraction Method. A file was constructed linking MDS assessments to Medicare claims and denominator files, NH provider files (OSCAR), hospice provider of service files, and the area resource file. Principal Findings. Twenty-six percent of hospice and 44 percent of nonhospice residents were hospitalized in their last 30 days of life (odds ratio [OR] 0.45; 95 percent confidence interval [CI]: 0.42-0.48). Adjusting for confounders, hospice patients were less likely than nonhospice residents to be hospitalized (OR 0.47; 95 percent CI: 0.45-0.50). Adding inverse propensity score weighting, hospice patients were still less likely than nonhospice residents to be hospitalized (OR 0.56; 95 percent CI: 0.53-0.61). Conclusions. Hospice selection introduces some bias in the evaluation of the causal effect of hospice on end-of-life hospitalization rates. However, even after adjusting for selection bias, hospice does have a powerful effect in reducing end-of-life hospitalization rates.

Background Identifying effective and accessible interventions for dementia caregivers is critical as dementia prevalence increases. Objective Examine the effects of a telephone-based intervention on caregiver well-being. Design Randomized, controlled trial. Setting Academic medical center. Participants 250 distressed, family, dementia caregivers. Intervention Caregivers randomized to receive 16 telephone contacts over 6 months of either the Family Intervention: Telephone Tracking–Caregiver (FITT-C) or Telephone Support (TS). Outcome Primary outcome variables were family caregivers’ depressive symptoms, burden, and reactions to care recipients’ behavior problems at 6 months. Results The FITT-C intervention resulted in significantly improved caregiver depressive symptoms (p = 0.003; 27% net improvement) and less severe reactions to care-recipient depressive behaviors (p = 0.009; 29% net improvement) compared to the control condition (TS). Conclusion An entirely telephone-based intervention improves caregivers’ depressive symptoms and reactions to behavior problems in the care recipient and is comparable to reported results of face-to-face interventions.