Family Caregivers’ Characterization of Conversations Following an ACP Event

Abstract

Background: Advance care planning (ACP) has been shown to benefit patients and families, yet little is known about how an ACP event impacts communication and conversation about end-of-life treatment wishes and the content of such conversations between patients and family caregivers. Objective: To characterize post-ACP conversations regarding medical wishes between seriously ill patients and their family caregivers. Participants: Patients with advanced illness and family caregivers. Outcome Measured: Post-ACP conversations. Design: As part of a larger randomized controlled trial, dyads consisting of seriously ill patients and their identified family caregiver engaged in ACP and created an advance directive for the patient. Approximately 4 to 6 weeks later, semistructured interviews were conducted with the family caregivers to elucidate the subsequent communications regarding medical wishes. If the dyad did not have any conversations post-ACP, reasons and barriers were explored. Results: The majority of dyads (131/188, 69.7%) had 2 to 3 conversations lasting 3 to 5 minutes each in the weeks immediately following ACP. These conversations most commonly addressed general patient wishes about quality of life and specific medical treatments. The most common reasons for not having conversations were a general discomfort with the topic (13/57, 22.8%) and previously having discussed medical wishes (16/57, 28.1%). Conclusion: The ACP events promote conversation regarding quality of life, general wishes at the end of life, and specific medical wishes. Barriers to conversation following ACP were similar to barriers to ACP in general, suggesting that a more intentional focus on addressing these barriers pre- and post-ACP may be necessary to improve communication.