“Everyone means well but the one person who's really going to go to bat” - experiences and perspectives of substitute decision makers in caring for their loved ones with serious mental illness

Abstract

In the era of on-going efforts to empower persons with mental illness to be independent decision makers as informed by the United Nations' Convention on the Rights of Persons with Disability (CRPD), family members acting as substitute decision makers (SDM) for people suffering from disabling serious mental illness (SMI) remain an integral part of the medical-legal system in psychiatric care in many parts of the world, including Canada; yet their experiences and perspectives are rarely studied. This explorative qualitative study examines the lived experiences and reflections of 14 family member SDMs in Toronto, Canada. Five key themes related to being SDM emerged: 1) Varied subjective understanding of the responsibility and authority of the SDM role; 2) Varied role demands and impact on SDMs' lives; 3) Challenges in dealing with the mental health system; 4) Leveraging decision making status to promote patient care; and 5) SDM role impact on family relationships. The need to improve SDM understanding of their role, acknowledging their value and care-taker burden, finding a balance for their involvement, and improving their support in efforts to enhance care for the patients are discussed.