2018 Volume 22 Issue 2 Pages 70-78
The purpose of this study was to clarify the psychological process in family caregivers who make proxy decisions on percutaneous endoscopic gastrostomy (PEG) from its selection to after end-of-life care for the elderly with dementia. Semi-structured interviews were conducted with seven main family caregivers who had selected gastrostomy and cared for the elderly patient until the end of life. Data were then analyzed using the modified grounded theory approach. Family caregivers considered gastrostomy to be “a type of food form” and “the gastric fistula to be natural,” therefore considering it “a natural progression rather than a life extension.” However, the elderly patients and their family caregivers underwent psychological and physical changes; therefore, the family caregivers “felt that the patient was being kept alive by the gastric fistula” and that they were “gradually drifting into a life of caregiving.” As the end of the patient’s life drew near, they felt “the urgency that the patient’s life was in their hands” and strongly felt that “the PEG is life-prolonging treatment.” Although they felt “a sense of relief that they were able to care for the patient until the end of life” when the end finally came, they felt “a sense of achievement in performing caregiving to the best of their ability” and “regret that they couldn’t let the patient pass away naturally.” The results suggest that during the end-of-life care for the elderly with a PEG, it is important to provide support for family members in order to enable them to engage in care with sufficient understanding of the patient’s physical status while preventing the development of guilt regarding feeding reduction or discontinuation.
