Preferences of older African-Americans for long-term tube feeding at the end of life

Abstract

The purpose of this study was to elicit preferences and reasons behind preferences for percutaneous endoscopic gastrostomy (PEG) tube placement in an older African-American sample. Five focus groups were conducted with subjects invited from the Geriatric Clinic of an urban tertiary care hospital. Thematic and latent content analyses were used. Five broad themes emerged as reasons behind the acceptance or rejection of a PEG tube, namely: the nature of the illness; the quality of life at the time of the decision; the concern about dependency; experiences; and religion (including issues of death). The issue of proxy also arose and contained three themes: fear of loss of decision-making ability; trust in family or caregivers as proxy even when the proxy choices differed from their own choices; and trust in the doctor and family to respect personal decisions. Use of a qualitative approach enabled potentially sensitive issues to be discussed. Preferences and the reasons behind these preferences may not always be anticipated by clinicians.