Care considerations in medical assistance in dying for persons with mental illness as the sole underlying medical condition: a qualitative study of patient and family perspectives.

BACKGROUND: Persons with mental illness as their sole underlying medical condition are eligible to access medical assistance in dying (MAiD) in a small number of countries, including Belgium, the Netherlands, Luxemburg and Switzerland. In Canada, it is anticipated that people experiencing mental illness as their sole underlying medical condition (MI-SUMC) will be eligible to request MAiD as of March 17th 2024. To date, few studies have addressed patient and family perspectives on MAiD MI-SUMC care processes. This study aimed to address this gap and qualitatively explore the perspectives of persons with lived experience of mental illness and family members on care considerations during MI-SUMC implementation. METHODS: Thirty adults with lived experience of mental illness and 25 adult family members residing in Ontario participated in this study. To facilitate participant engagement, the semi-structured interview used a persona-scenario exercise to discuss perspectives on MAiD MI-SUMC acceptability and care considerations. Framework analysis was used to inductively analyze data using NVivo 12 Pro. Steps, processes, or other care considerations suggested by the participants were charted in a framework matrix after familiarization with the narratives. Key themes were further identified. A lived-experience advisory group participated in every aspect of this study. RESULTS: Six themes were developed from the patient and family narratives: (1) Raising MAiD MI-SUMC awareness; (2) Sensitive Introduction of MAiD MI-SUMC in goals of care discussions; (3) Asking for MAiD MI-SUMC: a person-focused response; (4) A comprehensive circle of MAiD MI-SUMC care; (5) A holistic, person-centered assessment process; and (6) Need for support in the aftermath of the decision. These themes highlighted a congruence of views between patient and family members and described key desired process ingredients, including a person-centred non-judgmental stance by care providers, inter-professional holistic care, shared decision making, and the primacy of patient autonomy in healthcare decision making. CONCLUSIONS: Family and patient perspectives on the implementation of MAiD MI-SUMC offer important considerations for service planning that could complement existing and emerging professional practice standards. These stakeholders' perspectives will continue to be essential in MAiD MI-SUMC implementation efforts, to better address the needs of diverse communities and inform improvement efforts.

Barriers and facilitators to primary care for people with mental health and/or substance use issues: a qualitative study.

BACKGROUND: Mental health and/or substance use issues are associated with significant disparities in morbidity and mortality. The aim of this study was to identify the mechanisms underlying poor primary care access for this population. METHOD: This was a community-based participatory action qualitative study, in which 85 adults who self-identified as having a serious mental health and/or substance use issue and 17 service providers from various disciplines who worked with this population participated in a semi-structured interview. RESULTS: Client, service provider and health system barriers to access were identified. Client factors, including socioeconomic and psychological barriers, make it difficult for clients to access primary care, keep appointments, and/or prioritize their own health care. Provider factors, including knowledge and personal values related to mental health and substance use, determine the extent to which clients report their specific needs are met in the primary care setting. Health system factors, such as models of primary care delivery, determine the context within which both client and service provider factors operate. CONCLUSIONS: This study helps elucidate the mechanisms behind poor primary health care access among people with substance use and/or mental health issues. The results suggest that interdisciplinary, collaborative models of primary healthcare may improve accessibility and quality of care for this population, and that more education about mental health and substance use issues may be needed to support service providers in providing adequate care for their clients.