Outcomes, experiences and palliative care in major stroke: a multicentre, mixed-method, longitudinal study

Area of Science:

• Neurology
• Palliative Care
• Qualitative Research

Background:

• Total anterior circulation stroke has a high case fatality rate.
• There is a need to understand patient and caregiver experiences and integrate palliative care into stroke services.

Purpose of the Study:

• To describe the experiences and needs of patients and caregivers following total anterior circulation stroke.
• To explore the integration of palliative care into stroke care.

Main Methods:

• Serial qualitative interviews with patients and caregivers at 6 weeks, 6 months, and 1 year.
• Completion of validated questionnaires (Palliative Care Outcome Scale, EuroQol-5D-5L, Caregiver Strain Index).
• Data linkage study of patients with anterior circulation stroke.

Main Results:

• 57% of patients died within 6 months; survivors experienced emotional distress and grief.
• Patients and caregivers faced challenges with end-of-life and disability planning.
• Healthcare professionals prioritized physical rehabilitation over palliative care discussions.

Conclusions:

• Realistic planning for death or survival with disability is needed for stroke patients and caregivers.
• Palliative care principles should be integrated, but the term may require reframing to avoid negative connotations.