Facilitated Advance Care Planning: What is the Patient Experience?

Abstract

There is little known about the patient experience of participating in facilitated advance care planning (ACP). We conducted a grounded theory study with facilitated ACP participants who had endstage renal disease. A theoretical model "a positive thing: peace of mind" emerged. This model contained three major categories: a) witnessing illness in self and others; b) "I don't want to live like that", a perception of poor quality of life associated with living with cognitive or physical impairments. These preexisting ideas interacted with c) the process, which contained the patient's experience of all of the interactions encountered in facilitated ACP. The relationship between the three categories left participants comfortable that they had addressed their concerns about living in a burdensome state for themselves or their families. The literature review supported prior illness experiences and self-perceived burden as important in advance decision making. The implications of these findings are discussed.