Abstract
Purpose: The objective of this study was to shed light on the experiences of spouses who were able to provide satisfactory home-based end-of-life care to their husband/wife with terminal cancer.
Method: We conducted an analysis using the modified grounded theory approach. The study participants were eight spouses who were satisfied with home-based end-of-life care that they provided in accordance with their husband/wife’s wishes.
Results: The caregiving experiences of spouses who provided satisfactory home-based end-of-life care consisted of three processes and eight categories. At the stage of ‘home-based end-of-life care selection and decision-making,’ spouses were “building a marital relationship that respects the patient’s desired way of living”, and “making tough decisions leading to home-based care”, which are mutually related. Next, at the stage of ‘independent caregiving for home-based end-of-life care for a terminal cancer patient,’ spouses “spontaneously acted to take on home-based end-of-life care as a spouse” and “expanded the limits of their sense of burden in order to provide home-based end-of-life care.” They did this by “obtaining support from visiting nurses” and “obtaining support from their primary care physician.” In doing this, spouses took action to “fulfill the wishes of the patient within the time they had left.” At the stage of ‘growth after end-of-life care,’ spouses “embarked on a new way of living as a bereaved person.”
Discussion: The caregiving experiences of spouses who provided satisfactory home-based end-of-life care had the stages of ‘home-based care selection and decision-making’ and ‘independent caregiving for end-of-life care for a terminal cancer patient.’ By analyzing the experiences of spouses who provided satisfactory home-based end-of-life care, we discovered an independent caregiving process. The results of this study could serve as reference for the promotion of home-based care for patients who are heavily dependent on medical care.
