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.