Perspectives of community members regarding tube feeding in patients with end-stage dementia: Findings from african-American and caucasian focus groups

Research has demonstrated that placement of permanent feeding tubes to provide artificial nutrition is more common among non-white populations, but there is a scarcity of research regarding why those differences may exist. The purpose of this study is to describe and understand community members' attitudes toward tube feeding and end-of-life decision-making. Four focus groups were convened in Greenville, NC. The 28 focus group participants were 11 African American and 17 Caucasian community members between ages 51 and 81. Two focus groups were held with Caucasian participants and two with African-American participants. Focus groups were recorded and transcribed, and qualitative analysis was performed using NVivo software. Seven themes resulted from the analysis of the transcripts. They included: "A feeding tube is," "Food is important," "They want to do the right thing," "To make a rational decision," "There are worse things than death," "There's a lot of good things," "It's out of my hands." There were more commonalities than differences in the views of African Americans and Caucasians on perspectives on tube feeding and elders with dementia. An unexpected emphasis was placed on the importance of food as a symbol of caring. Families tend to be oriented toward personal fidelity to the elder and the symbolic role of feeding in fulfilling that fidelity.