In this blog for our #LifeAfterStroke series, Scott Murray and Marilyn Kendall talk about the rich evidence from their in-depth interviews, which could guide provision of person-centred care after major stroke and support people in living and dying well.
Editors’ note, 21 January 2022: This blog continues to attract an unusually high number of comments, mostly from people reflecting on their own painful experiences of someone close to them having a major stroke. We thank them for sharing their stories here and encourage other people for whom this topic is relevant to read some of them. Others who find themselves in this situation may find some comfort from them while health professionals may gain valuable insights to help them support patients and their families.
Much is written about living with stroke, but little about dying after stroke. Yet most people with a severe stroke will die within 6 months. Does palliative care have a place to help such people maximise their quality of life and help them die as well as possible? Is it needed? Do people want it? How well does rehabilitation address people’s emotional needs as well as their physical?
The WHO declared 30 years ago and recently affirmed that any life-threatening illness (like a severe stroke) should immediately trigger consideration of a palliative care approach . This means that attention is routinely paid to all dimensions of distress, including physical, social, psychological and spiritual, according to what is most important to the patient and their family at the time. Patients should then also be actively involved in planning ahead with care professionals to address uncertainties and prevent unnecessary suffering.
Our primary care research group at Edinburgh University has been generating evidence to advocate for early person-centred care and planning for everyone with various life-threatening illnesses. Over the last 15 years, we have conducted many serial interview studies with patients in their last year of life and their family and professional caregivers. We have developed this method to yield multi-perspective dynamic accounts ,. This has allowed us a nuanced understanding of the experiences, needs and preferences of patients with various illnesses: progressive cancers, advanced organ failure ( heart, lungs and liver) or with frailty ,. We have vividly highlighted disparities in health and social care provision for those with non-malignant conditions, and that palliative care is usually introduced in the last weeks or days of life rather than earlier when it can lead to most benefit and reduce inappropriate treatment.
Our stroke study
In this our latest study published in March 2018 in the Canadian Medical Association Journal, our group united with Professors of Stroke Medicine (Gillian Mead in Edinburgh and David Stott in Glasgow) and other leading hospital clinical specialists in Scotland to try and reach a multi-disciplinary understanding of what palliative care may or may not offer stroke care.
We conducted a qualitative study of patients’ quality of life and a data linkage study exploring patterns of death after a severe stroke. For the linkage study, we identified 219 patients with total anterior circulation syndrome admitted to three stroke units in Scotland. The fatality rate within six months was 57%.
From this same cohort we recruited 34 patients and their informal caregivers for the qualitative longitudinal study. They completed questionnaires and participated in in-depth interviews at up to six weeks, six months and one-year post-stroke. These participants’ mean age was 75 years, 18 were being tube fed, 24 had aphasia, 20 had a urinary catheter and 18 had an informal caregiver at home.
In the serial interviews, we identified several major themes:
Patients and relatives faced death or a life not worth living and experienced immediate and persistent emotional distress. Those who survived expressed grief for a former life. Families reported that, despite the high risk of death, care was overly focused on physical recovery with little attention to emotional needs or preparation for death.
“If they had told us the magnitude of the stroke as far back as the first hospital visit we would have done things differently, rather than pushing for something that was never going to happen”.
Study participant whose father died
Professionals focused on physical rehabilitation rather than preparing the patient and caregiver for death or limited recovery. Like patients they associated palliative care with doing less rather than more care and planning.
“We need her thinking it’s going to get better otherwise she won’t commit and then you won’t get the same outcome”.
“suppose it depends what we mean by ‘palliative care’, but it’s, you know, no more needles and no more drips and no more antibiotics …”
Hospital doctor — first interview
For all involved, although there were frequently good discussions, constructive planning was challenging.
“I mean, they sit and explain everything to you, but you’re still coming away with nothing”
Interview extract from a caregiver
As major stroke brings likelihood of death but little preparation, we suggest:
- Rehabilitation should incorporate the principles of palliative care to address the emotional, social and spiritual – as well as the physical – needs of patients.
- As dying is a real risk with patients with major stroke, a model of care planning balancing hoping for the best with preparing for the worst from admission is realistic. This is acceptable to patients and their carers based on these interviews.
- Many people with a severe stroke die within 6 months despite excellent and speedy medical care. Whilst we hope for a good recovery, relatives and patients also should be supported in preparing for the worst to help them to focus on quality of life. Their care should reflect the possibility of death and disability. They should have a plan A and also a plan B. This aspect of care should be considered in overall care for patients with stroke
- Practising the principles of palliative care is appropriate and indeed needed, but the term ‘palliative care’ should possibly be avoided or reframed. The term “palliative care” had connotations of treatment withdrawal and imminent death.
Jessica Simon of the University of Calgary in Alberta, Canada, author of a related editorial in the same journal, commented:
“Using a palliative care approach that attends to prevention and relief of suffering, whether physical, social or emotional, can help patients and those close to them as they grieve the losses that come with that stroke and can help them to keep living as well as they can, whether or not death ensues”
The value of qualitative studies
Policymakers and guideline developers need relevant and context-sensitive evidence to support innovations and interventions. We would like to emphasize the usefulness and the value of qualitative evidence regarding the experience of people with life-threatening conditions during their last year of life. This type of evidence is useful to assess the needs, values, perceptions and experiences of stakeholders, including policymakers, providers, communities and patients, and is thus crucial for complex health decision-making. 
We would like to congratulate Cochrane on their increased interest in reviews of qualitative evidence. In this regard, the Confidence in the Evidence from Reviews of Qualitative research (CERQual) approach, which has been developed in order to support the use of qualitative evidence in decision-making, is a very valuable development. This approach is now used by WHO, allowing qualitative evidence to support recommendations.
One of the main challenges we face moving from evidence to improved care is to be able to make recommendations regarding the services and interventions that would optimally meet the specific needs of patients and their carers. Synthesis of qualitative studies has great potential to generate many useful insights in helping people with stroke and other life-threatening illnesses live and die well. Based on a qualitative analysis , we have produced a 3-minute video that gives a rationale for early palliative care for people with different conditions. We now plan to extend this to include people with major stroke.
Useful links from the Primary Palliative Care Research Group, University of Edinburgh:
- Kendall, M., et al., Outcomes, experiences and palliative care in major stroke: a multicentre, mixed-method, longitudinal study CMAJ, 2018. 5(190): p. E238-246
- Primary Palliative Care Research Group (PPCRG), Usher Institute, University of Edinburgh
- Primary Palliative Care Research Group (PPCRG) – Videos
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References (pdf). Scott Murray’s profile may be found below.
Scott Murray and Marilyn Kendall have nothing to disclose.