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.

Factors Associated with Physician Decision-Making in Starting Tube Feeding

“…7,14 Even patients recognize that their families may not agree with their advance directives, and some prefer for their families' wishes to supersede their own. 25 Previous studies have noted that family discord is a very important factor in decision making for more legally defensive physicians, 26 supporting the association between great importance of liability concerns and family preferences with starting tube feeding. While Hawaii's legal statutes allow designated surrogate decision making regarding tube feeding, in the case of nondesignated surrogates, two physicians must document nonbenefit from tube feeding to withdraw or withhold.…”

Caring for patients on home enteral nutrition: Reported complications by home carers and perspectives of community nurses

“…In addition to physical complications, poor psychological outcomes such as depression and anxiety were frequently found in patients on HEN (Best & Hitchings, 2010;Fairrow, McCallum, & Messinger-Rapport, 2004;Mauri et al, 2012). Fear of being dependent and institutionalised and the emphasis on self-management of their activities of daily living (ADLs) were also described by patients on enteral feeding (Fairrow et al, 2004). Previous research highlighted that the inability to perform ADLs significantly reduced social interactions for patients on HEN (Mauri et al, 2012).…”

Limited PEG tube use: the experience of long‐term care directions

“…The extensive use of NGT among Taiwanese LTC, patients despite physiological and comfort issues, is a problem requiring investigation. The impact of culture on PEG use has been investigated with respect to measure physiological outcomes (Fairrow et al. 2004, Braun et al.…”