The current approach to post-stroke care is overly focused on physical recovery, with little attention given to emotional needs or preparation for death, according to research from the University of Edinburgh.
The University’s Primary Palliative Care Research Group recruited a sample of people with total anterior circulation stroke attending 3 stroke services in Scotland. The needs and experiences of patients and carers were examined in a series of qualitative interviews conducted at 6 weeks, 6 months and 1 year. Palliative Care Outcome Scale, EuroQol-5D-5L and Caregiver Strain Index questionnaires were completed after interviews.
Within six months, 57% of patients with total anterior circulation stroke had died. The questionnaires recorded that the patients experienced immediate and persistent emotional distress and poor QoL in the year after the event.
Presenting the findings in CMAJ (the Canadian Medical Association Journal), the authors report that “patients and their informal caregivers faced sudden complex decisions, anxiety, distressing symptoms and the likelihood of death. Transition to home or to a care home brought feelings of abandonment. Some experienced a lack of hope and meaning, and grief for a former life.”
However, they caution that while the principles of palliative care should be practised, the term ‘palliative care’ should be avoided as it was equated with ‘last-days-of-life’ care by healthcare professionals, patients and family. The term held connotations of treatment withdrawal and imminent death, they said.
“Major stroke brings likelihood of death but little preparation. Realistic planning with patients and informal caregivers should be offered, raising the possibility of death or survival with disability,” they recommend.
