Dilemmas for guardians of advanced dementia patients regarding tube feeding

Abstract

Background: advanced dementia is an incurable illness, its last stage marked by inability to eat. Tube feeding was deemed a helpful solution at this stage, but in recent years its inefficiency has been proved, and it is no longer practiced in many countries around the world. In Israel, however, the procedure is still accepted. In the gastroenterology department at the Bnai Zion Medical Center, a serious interaction is ongoing with patients' legal guardians, where detailed information is given about the inefficiency of the tube procedure. Nevertheless, the great majority of guardians choose to have it performed. Purpose: to probe the considerations underlying the decision for gastrostomy, despite the data and the recommendations. Method: qualitative research, including participant observation at the clinic and in-depth interviews with guardians. Findings: the families of most patients did not discuss end-of-life issues with them. The overwhelming preference for using the technology was interpreted as life-saving, in contrast to comfort feeding, which was deemed euthanasia. The reasons given for the decision to tube feed were drawn from a range of outlooks: religion, the patient's earlier survival capacity, and pragmatic considerations involving relations with nursing home staff. Conclusion: study of the decision-making process of advanced dementia patients' guardians sheds light on the layers of meaning of the Israeli discourse regarding end-of-life issues.