Advance Care Planning among People Living with Dialysis

Purpose: Recent nephrology literature focuses on the need for discussions regarding advance care planning (ACP) for people living with dialysis (PWD). PWD and their family members’ attitudes toward ACP and other aspects of late-life decision making were assessed in this qualitative study. Methodology: Thirty-one interviews were completed with 20 PWD over the age of 70 (mean dialysis 34 months) and 11 family members, related to life experiences, making medical decisions, and planning for the future. Interviews were recorded, transcribed and analyzed. Findings: Four themes regarding ACP emerged from this secondary analysis of the interviews: how completing ACP, advance directives (AD), and identifying an agent fit into PWD experiences; PWD understanding of their prognosis; what gives PWD lives meaning and worth; and PWD care preferences when their defined meaning and worth are not part of their experience. These PWD and family members revealed that ACP is ongoing and common among them. They did not seem to think their medical providers needed to be part of these discussions, since family members were well informed. Practical implications: These results suggest that if health care providers and institutions need AD forms completed, it will important to work with both PWD and their family members to assure personal wishes are documented and honored.