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.

Objectives-Despite the evidence that feeding tube use in persons with advanced dementia is not associated improved outcomes, there remains striking area variation in their use. Yet, little is known about the national incidence of feeding tube insertions, the circumstances of their insertion, and postinsertion health care utilization. Design-Secondary analysis of Minimum Data Set merged onto Medicare Claims FilesSetting and Participants-Nursing home residents (NHR) without a feeding tube Measurements-NHR were followed for up to one year to see whether a feeding tube was inserted and then followed for one year post insertion to examine health care utilization and survival.

Background/Objectives The objective of this study was to examine survival with and without a percutaneous endoscopic gastrostomy (PEG) feeding tube using rigorous methods to account for selection bias. A second objective was to examine whether the timing of feeding tube insertion affected survival. Design Prospective cohort study Setting All U.S. Nursing Homes Participants 36,492 nursing home residents with advanced cognitive impairment from dementia and new problems eating studied between 1999–2007. Measurements Survival following the development of the need for eating assistance and feeding tube insertion. Results Of the 36,492 nursing home (NH) residents (88.4% white, mean age 84.9, 87.4% with one feeding tube risk factor), 1,957 (5.4%) had a feeding tube inserted within 1 year of developing eating problems. After multivariate analysis correcting for selection bias with propensity score weights, no difference was found in the survival of the 2 groups (AHR 1.03, 95% CI 0.94–1.13). Among residents who were tube-fed, the timing of PEG tube insertion relative to the onset of eating problems was not associated with improved survival post feeding tube insertion (AHR 1.01, 95% CI 0.86–1.20) comparing those persons with a PEG inserted within a month of developing an eating problem compared to later (4 months) insertion. Conclusion This national study confirms that neither insertion of PEG feeding tubes nor the timing of the insertion improve survival.

OBJECTIVES To examine the effectiveness of hospice services for persons dying from dementia from the perspective of bereaved family members. DESIGN Mortality follow-back survey. SETTING Death certificates were drawn from five states (AL, FL, TX, MA, and MN). PARTICIPANTS Bereaved family members listed as the next of kin on death certificates when dementia was listed as the cause of death. MEASUREMENTS Ratings of the quality of end-of-life care, perceptions of unmet needs, and opportunities to improve end-of-life care. Two questions were also asked about the peacefulness of dying and quality of dying. RESULTS Of 538 respondents, 260 (48.3%) received hospice services. Family members of decedents who received hospice services reported fewer unmet needs and concerns with quality of care (adjusted odds ratio (AOR) = 0.49, 95% confidence interval (CI) = 0.33–0.74) and a higher rating of the quality of care (AOR = 2.0, 95% CI = 1.53–2.72). They also noted better quality of dying than those without hospice services. CONCLUSION Bereaved family members of people with dementia who received hospice reported higher perceptions of the quality of care and quality of dying.