Discussing end-of-life care for persons experiencing severe and persistent mental illness: a qualitative study among stakeholders in Flanders

Abstract

Background: End-of-life care for persons experiencing severe and persistent mental illness (SPMI) is a complex topic that deserves more attention. Despite growing awareness within international scientific research, topics such as palliative psychiatry, the provision of palliative care, and ethical dilemmas, including medical assistance in dying, remain under-researched. The aim of this study is therefore to qualitatively explore the views of different stakeholders on these issues to inform care providers about current challenges and opportunities in care.

Methods: A qualitative study in Flanders, Belgium, involving 73 participants-including care users, caregivers, managers, and experts-explored experiences, needs, challenges and dilemmas regarding end-of-life care for persons experiencing SPMI. Semi-structured interviews were conducted, transcribed, and thematically analyzed.

Results: Explored themes included advance care planning, suicide risk and prevention, euthanasia, the provision of palliative care, bereavement care, and the use of a palliative care approach. Challenges in standardizing advance care planning were noted. Euthanasia requests were rare but ethically complex. The provision of palliative care within familiar settings was favored but posed challenges related to expertise and staffing. Farewell rituals emphasized strong bonds between caregivers and care users. The study highlights the importance of advance care planning, the relative absence of discussions about suicide and euthanasia, and the challenges in providing palliative care. It underscores the need for education, ethical support, and collaboration with palliative care networks.

Conclusions: End-of-life care for persons experiencing SPMI demands a comprehensive approach that addresses ethical considerations, advance care planning, suicide risk, and the provision of palliative care. Policy recommendations include investing in education, establishing ethical support mechanisms, and fostering collaboration with palliative care networks to ensure dignified and compassionate care for this vulnerable population.

Keywords: End-of-life care; Oyster Care; euthanasia; palliative care; severe and persistent mental illness (SPMI).