Provide stroke patients with palliative care support minus the label

When caring for stroke patients, health care providers should focus on the social and emotional issues facing patients, rather than only physical rehabilitation, according to a new study published in CMAJ (Canadian Medical Association Journal).

"Rather than focusing only on physical rehabilitation, a realistic approach to managing care should consider the emotional needs of patients and their caregivers," says Dr. Scott Murray, Primary Palliative Care Research Group, University of Edinburgh, Edinburgh, United Kingdom. "Balancing the need for hope of recovery with the potential of severe disability or death is important in this approach."

Stroke is the second leading cause of death, accounting for 11% of deaths worldwide. Survival is especially poor for people who have had a severe total anterior circulation stroke with loss of motor control, language and other conditions.

The study of 219 patients in central Scotland with severe stroke (total anterior circulation stroke) looked at the experiences, concerns and priorities of patients, families and health care professionals in the 12 months after stroke. In the first 6 months, 57% (125 people) died, with 1-year fatality of 60% (132 deaths.) About two-thirds (67%) of deaths occurred within the first month after stroke.

Researchers found that patients and their families reported grief over the loss of their previous life, anxiety among caregivers over whether they were "doing the right thing," uncertainty about the future and confusion about prognosis. As well, the term "palliative care" was interpreted negatively by many health care providers, families and informal caregivers, as it is associated with care for people, for example patients with advanced cancer, who are dying.

"Many patients and informal caregivers would have welcomed more support in making decisions and in planning for the future from day one," writes Dr. Murray with coauthors. "The focus was on active rehabilitation, recovery, motivation and hope, with much less discussion and preparation for limited recovery."

The authors suggest that the principles of palliative care rather than the term itself should be applied to stroke patients, which means supporting people to live well with deteriorating health and making them comfortable until their eventual death.

In a related commentary www.cmaj.ca/lookup/doi/10.1503/cmaj.170956, Dr. Jessica Simon, Department of Oncology, University of Calgary, writes "the challenging questions for physicians and other health care providers should not be, 'What shall we call it?' or 'Who should receive palliative care?'; the questions for each patient who is facing the challenges associated with life-threatening illness should be, 'Am I providing the palliative care support my patient needs?' and 'Is there access to sufficient specialist palliative care resources in my community if needed?'."

"Outcomes, experiences and palliative care in major stroke: a multicentre, mixed-method, longitudinal study" is published March 5, 2018.