Health expectations : an international journal of public participation in health care and health policy · 2026
'It Simply Required Far Too Many Steps and Made You Feel You Were Just a Number'. Family Caregivers' Experiences With Assisted Suicide in Austria: A Qualitative Study.
СтатьяПоддержка исследования: вне правительства СШАНазвание и аннотация: Перевод в очереди
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Vielgrader Tamina-Laetitia, Mewes Ricarda, Fischer Julia, Hluch Jana Marica, Kletecka-Pulker Maria, Kreye Gudrun, Zeilinger Elisabeth Lucia
Аннотация
INTRODUCTION: This study examines the lived experiences of family caregivers navigating the legal and emotional complexities of Austria's newly enacted Dying Decree Law.
METHODS: A qualitative interview study was conducted with nine family caregivers (eight women) of people seeking assisted suicide (PSAS) in Austria. Participants were recruited through purposive sampling through multiple recruitment channels. Interviews were analysed using thematic analysis (supported by MAXQDA).
RESULTS: Seven overarching themes emerged: (1) Dynamics of Dying and Saying Goodbye; (2) Inclusion versus Exclusion in the Decision-Making Process; (3) Role Negotiation and Responsibilities; (4) Bureaucratic and Legal Barriers; (5) Social Exclusion and Stigmatisation; (6) Support Needs and Structures; and (7) Ramifications in the Post-Mortem Phase. Family caregivers reported a lack of formal guidance, often leading to isolation and exhaustion. Open communication was repeatedly highlighted as essential in order to honour the PSAS's wishes and alleviate family caregivers' grief.
CONCLUSION: Family caregivers function as advocates and bureaucratic managers while simultaneously serving as carers who provide the PSAS with physical and emotional support. Rather than relying on the legal framework alone, public policy should also formally acknowledge this dual role and deliver government‑led structural support for family caregivers to lessen their emotional and bureaucratic burden.
PATIENT OR PUBLIC CONTRIBUTION: Family caregivers of PSAS were central to this research. We interviewed family caregivers about their experiences with assisted dying under Austria's Dying Decree Law, and incorporated their suggestions for addressing the identified challenges and improving support structures. Their contributions were integral to the study's findings and its focus on enhancing support structures for family caregivers within assisted dying systems.
METHODS: A qualitative interview study was conducted with nine family caregivers (eight women) of people seeking assisted suicide (PSAS) in Austria. Participants were recruited through purposive sampling through multiple recruitment channels. Interviews were analysed using thematic analysis (supported by MAXQDA).
RESULTS: Seven overarching themes emerged: (1) Dynamics of Dying and Saying Goodbye; (2) Inclusion versus Exclusion in the Decision-Making Process; (3) Role Negotiation and Responsibilities; (4) Bureaucratic and Legal Barriers; (5) Social Exclusion and Stigmatisation; (6) Support Needs and Structures; and (7) Ramifications in the Post-Mortem Phase. Family caregivers reported a lack of formal guidance, often leading to isolation and exhaustion. Open communication was repeatedly highlighted as essential in order to honour the PSAS's wishes and alleviate family caregivers' grief.
CONCLUSION: Family caregivers function as advocates and bureaucratic managers while simultaneously serving as carers who provide the PSAS with physical and emotional support. Rather than relying on the legal framework alone, public policy should also formally acknowledge this dual role and deliver government‑led structural support for family caregivers to lessen their emotional and bureaucratic burden.
PATIENT OR PUBLIC CONTRIBUTION: Family caregivers of PSAS were central to this research. We interviewed family caregivers about their experiences with assisted dying under Austria's Dying Decree Law, and incorporated their suggestions for addressing the identified challenges and improving support structures. Their contributions were integral to the study's findings and its focus on enhancing support structures for family caregivers within assisted dying systems.