Exploring Canadian genetic counselors' perspectives and experiences with discussing medical assistance in dying (MAiD)

Abstract

AbstractMedical assistance in dying (MAiD) is the Canadian equivalent of Physician aid‐in‐dying (PAD) in the United States. Through changes to the eligibility criteria for MAiD in 2021, Canada now has one of the most permissive assisted dying regimens in the world. This study describes Canadian genetic counselors' experiences, knowledge, and preparedness to discuss MAiD with their patients. Survey responses were collected from Canadian genetic counselors (n = 44) and were followed by semi‐structured interviews with 14 survey participants. Survey data were analyzed using descriptive statistics, and interview transcripts were analyzed using phronetic iterative analysis and an interpretive description approach. Survey data revealed that genetic counselors have discussed MAiD with patients referred for cancer, neurologic, metabolic, connective tissue, and cardiac indications (n = 18, 40.9%). While most thought that it was important for genetic counselors to be knowledgeable of (n = 41, 93.2%) and prepared to discuss MAiD (n = 43, 97.7%), many were not familiar with the eligibility criteria (n = 27, 61.4%) and the process for accessing MAiD in Canada (n = 29, 65.9%). Interview participants described discussions about MAiD that were initiated by themselves or their patients. Most participants felt prepared to explore a patient's thoughts about MAiD when the patient initiated the discussion but did not feel well‐prepared to share detailed information about MAiD. Participants were interested in education and professional guidance to assist them in preparing to discuss MAiD. Learning objectives were developed based on participants' suggestions to assist genetic counselors in their clinical work and self‐directed research and to aid in the development of professional guidelines and educational materials for practicing genetic counselors and genetic counseling trainees. As genetic counselors continue engaging in discussions about MAiD, it is critical that these sensitive conversations are approached with increased knowledge and awareness of MAiD legislation, the ethical issues surrounding MAiD in Canada, and relevant patient resources.