Co-Designing End-of-Life Care for People With Pre-Existing Severe Mental Illness: Insights From Multiple Stakeholder Consultations.
Jialiang Cui, Cong Zheng, Cheryl Chi-Yan Yeung and 1 others
PMID 41603357WHAT IT FOUND
People with severe mental illness and staff described end-of-life care as late, poorly assessed, and stigmatised.
Stakeholders co-designed priorities: simpler assessment tools, legal help, dying-in-place protocols, and joint palliative-mental health training.
Key findings
01Stakeholders said terminal illness was often identified late, leaving little time for end-of-life care.
02Physical complaints were sometimes downplayed or misattributed to psychiatric conditions, and current palliative assessment wording was confusing for people with cognitive difficulties.
03Participants recommended reciprocal training between mental health and palliative care staff and clearer guidelines for dying in place.
STILL TO COME
How it was doneWhat they foundWhat it means for RNs
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What it does not show
This is a co-design study of stakeholder views, not a test of whether the recommended changes work. Only 11 people with severe mental illness and 1 family caregiver took part, while 26 professionals shaped most discussion. Workshop discussions were not audio recorded, so analysis relied on research team notes. The findings are from Hong Kong and a project piloted for about half a year, so they may not transfer elsewhere. The study did not examine differences by diagnosis or severity within severe mental illness.
Declared interests
The Hong Kong Jockey Club Charities Trust funded the work. The authors declare no conflicts of interest.
The easy way to misread this
Do not read the recommendations as proof that these changes improve end-of-life care. They were co-designed priorities from workshop notes, not tested outcomes.