Decision-making and outcomes of feeding tube insertion: a five-state study.

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.