Palliative medicine · 2026
Dynamics of disclosure: A qualitative study of how family caregivers discuss deaths by medical assistance in dying.
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Kiatpanabhikul Yanin, Hales Sarah, Tong Eryn, Li Madeline, Rodin Gary, Selby Debbie, Isenberg-Grzeda Elie, Bean Sally, Nissim Rinat
Аннотация
BACKGROUND: Assisted dying has become an increasingly available option. Limited literature explores how family members disclose a patient's choice of death by Medical Assistance in Dying (MAiD).
AIM: To explore how family members handled the disclosure of the patients' choice to pursue MAiD.
DESIGN: This qualitative study is part of a larger mixed-methods project examining patient and caregiver experiences with MAiD. Semi-structured interviews with family members of patients who had requested MAiD were conducted shortly after the patient's death and/or approximately 6 months post-death and analyzed using a modified grounded theory methodology.
SETTING/PARTICIPANTS: Participants were recruited at two tertiary hospitals in Toronto, Canada. Participants were included if they were identified by the patient requesting MAiD to be a family caregiver. A total of 55 interview transcripts from 43 participants were analyzed.
RESULTS: Findings include a core category of 'dynamic disclosure', representing disclosure as an ongoing process informed by two subcategories that influence each other: 'Factors influencing disclosure' and 'Outcomes of disclosure'. 'Factors influencing disclosure' include five subcategories: 'Honoring the patient's choice'; 'Desire to advocate'; 'Navigating the novelty and stigma'; 'Reluctance to speak of death and dying'; and 'Managing sensitive information'. 'Outcomes of disclosure' include four subcategories: 'Validation and acceptance'; 'Peer connection'; 'Criticism, opposition, and silence'; and 'Curiosity and knowledge seeking'.
CONCLUSIONS: Disclosure of assisted dying is a complex, evolving process that is influenced by multiple factors. Understanding these factors and potential outcomes of disclosure can help inform healthcare professionals in supporting families throughout the assisted dying process and into bereavement.
AIM: To explore how family members handled the disclosure of the patients' choice to pursue MAiD.
DESIGN: This qualitative study is part of a larger mixed-methods project examining patient and caregiver experiences with MAiD. Semi-structured interviews with family members of patients who had requested MAiD were conducted shortly after the patient's death and/or approximately 6 months post-death and analyzed using a modified grounded theory methodology.
SETTING/PARTICIPANTS: Participants were recruited at two tertiary hospitals in Toronto, Canada. Participants were included if they were identified by the patient requesting MAiD to be a family caregiver. A total of 55 interview transcripts from 43 participants were analyzed.
RESULTS: Findings include a core category of 'dynamic disclosure', representing disclosure as an ongoing process informed by two subcategories that influence each other: 'Factors influencing disclosure' and 'Outcomes of disclosure'. 'Factors influencing disclosure' include five subcategories: 'Honoring the patient's choice'; 'Desire to advocate'; 'Navigating the novelty and stigma'; 'Reluctance to speak of death and dying'; and 'Managing sensitive information'. 'Outcomes of disclosure' include four subcategories: 'Validation and acceptance'; 'Peer connection'; 'Criticism, opposition, and silence'; and 'Curiosity and knowledge seeking'.
CONCLUSIONS: Disclosure of assisted dying is a complex, evolving process that is influenced by multiple factors. Understanding these factors and potential outcomes of disclosure can help inform healthcare professionals in supporting families throughout the assisted dying process and into bereavement.