Living and dying well after stroke

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. 

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 [1]. 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.

dying well

Our primary care research group at Edinburgh University has been generating evidence to advocate for early person-centred care

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 [2],[3]. 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 [4],[5]. 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”.

Ward Physiotherapist

“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. [6]

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.

Dr Marilyn Kendall is a Senior Research Fellow at Edinburgh University with much experience in qualitative methods and conducting high-impact research. She is a Social Scientist and teaches qualitative research at Edinburgh University.

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 [7], 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:

References may be found here. Scott Murray’s profile may be found below.

Scott Murray and Marilyn Kendall have nothing to disclose.

Scott Murray

About Scott Murray

view all posts

Prof Scott Murray is the St Columba’s Chair of Primary Palliative Care, University of Edinburgh. Scott Murray leads a Palliative Care Research Group based in Primary Care. Their in-depth qualitative research concludes that different people need different types of palliative care. Scott chairs the International Primary Palliative Care Network, and advises the WHO on primary palliative care.

10 Comments on this post

  1. Avatar

    my mom had a stroke on 21 aug, 2018. this led to a partial loss of speech, memory and brain and body functions. then, on 22 jan 2019, she had another stroke. she almost stopped talking, could not swallow and had to be fed via a Ryle’s tube. over the next few months, she became completely paralysed and totally lost her ability to react or to understand. even if i shout close to her face or ears, it does not lead to any reaction. the only thing that seems to interest her strangely is – if i play a movie on my computer. it could be any moving image – even text – thats the only thing she seems to somehow show interest in. her neurologist said – she’s like a baby, attracted to the tv.

    initially, we hoped and prayed she would recover. instead, she deteriorated to a condition we had no idea could happen.
    i wonder what’s next? how long will she survive? what else will she suffer from?

    my mom’s the dearest thing in the world to me. i could die for her. i wish i could take her illness, and she would recover.
    its been a cruel, heart-breaking year and a half!

    Mandeep / Reply
    • Avatar

      Dear Mandeep, I am so sorry to hear about your mom’s strokes. When I was doing the interviews for our study many relatives told me that, like you, they found the experience cruel and heart-breaking. This is why it is so important to do research into stroke.

      We undertook the study to improve care and support for people like your mom, but also to improve communication and advice for people like you who have to face very difficult situations and decisions, often out of the blue. We want relatives to feel that they are well informed and have a plan in place for both recovery and deterioration, and feel supported whatever the outcome.

      All best wishes, and wishing you and your mom all the very best in this most challenging situation


      Marilyn Kendall / (in reply to Mandeep) Reply
  2. Avatar

    Scott: Thanks for this article. It truly sheds light on a topic my family and I have been battling with ever since my mother suffered a debilitating stroke as a result of an AVM rupture. Initially, we were told she’d never eat/breathe on her own – but after being life-flighted to a far superior hospital, she started showing signs of improvement. She went from a critical coma, to minimally conscious, to being discharged to a rehab facility. Once rehab completed, she actually went back home with my father. Obviously, all of our expectations and hopes were sky-high. Though her speech and balance were (and will always be) massively affected, she excelled with her PT and OT. Each week she showed signs of improvement, even had her feeding tube removed because she was back on solids. Then, however, she had to go under the knife to remove the remaining portions of the ruptured AVM to prevent future bleeds – and this is where everything went to hell. Post-surgery saw her struggle almost worse than she did upon release from the hospital to rehab. Her appetite disappeared, and she’s lost nearly 30lbs (weight that an already small woman isn’t suited to lose). Her speech and balance seem to have worsened, and her overall demeanor is that of someone who’s truly given up. In reading you article, I can’t help but wonder if we’ve all focused entirely too much attention on the rehabbing, and have been denying the fact that this stroke may have gotten the best of my mother. There’s always talk about reintroducing a feeding tube, and new forms of PT and OT to stimulate her brain, but the truth is, I don’t believe she wants to bother anymore. And, if my feet were in her shoes, I don’t think I’d want to go on. She was such a vivacious, outgoing, wonderful human being – and to be reduced to 24 hour in-home care, and a life of basically sitting most of the day in a chair watching TV has got to be utterly defeating. Yet, none of us have addressed that elephant in the room. This article has helped me see the necessity in — at very least — asking my mother what SHE wants, rather than everyone else focusing on what they want. I never knew, prior to this, what monsters strokes are, and just how crippling they can be. I don’t want my mother to suffer, and I know no one else does either. To anyone reading this article, and reading my post – I am so, so, so sorry for the losses you’ve all experienced at the hands of a stroke. I wouldn’t wish my experience on my worst enemy, and I’m sure many of you feel the same. Sending positive vibes.


    Matt / Reply
    • Avatar

      Hi Matt, I just read your post and wanted to say I’m so sorry for what happened to your Mum and for what you are all suffering now. It’s so unfair and it doesn’t make any sense. Stroke is such a horror. My Mum is in a similar situation to your Mum and some days I can hardly breathe with the horror and sadness. A year on its still a shock and I wish so desperately there was something I could do to give Mum back her life. Sending love and strength to you and your Mum.

      Laura / (in reply to Matt) Reply
  3. Avatar

    My dad had a massive stroke and died 5 months after. I am being criticised that I didn’t bring him home and care for him. I was told by the hospital that it wasn’t possible , due to carers not able to give him the time required to do what was needed. He refused care a lot of the time. They said it was 24hr care required. Being at home was not an option. Should I have taught this more? Sold his house to pay for the care needed? I’m now so desperate and upset.

    Lea Edwards / Reply
    • Avatar

      Dear Lea,
      So sorry to learn about your father dying 5 months after a massive stroke, and that you are left with many questions about how things might have been done. Certainly you should not have had to sell his house, especially when there we considerable uncertainty about his future. I am sure you did everything you should have done in the circumstances
      The reason we wrote this blog was to try to explain to the professionals who care for patients with serious strokes that they must really talk with the patient (if at all possible) and their family carer in the weeks and months after a serious stroke so that there should be no regrets of nagging questions in the long run. I am sorry that the health service is generally not so good at doing this for people who do not have cancer, and will continue to urge professionals to talk about various options as soon as the illness is life-threatening, not just when a patient is obviously near to death

      Scott A Murray / (in reply to Lea Edwards) Reply
  4. Avatar

    My 82 year old father had a stroke a few month ago and is now in hospice care. Suddenly started eating and drinking and actually gained a little weigh. Last week he suddenly had a burst of life for s few days and suddenly it seems like he going back to sleeping more and cut back on eating and drinking. Could this be a bad thing?

    Bill / Reply
  5. Avatar

    Thank you, Thank you, Thank you, for addressing every stroke survivor’s ‘elephant in the room’ (regardless of degree of recovery/disability).

    annette dancer / Reply
    • Avatar

      Dear Marilyn and Scott,
      Thank you for this article, it helps me a lot knowing there are other people experiencing similar fates. My father had an ischemic stroke in December 2017 at the age of 89. He couldn’t swallow and was fed with nose tube. He also lost his speech completely and can only say nananana. He has hemiplegia and is incontinent.
      6 weeks after the stroke the doctors told me he would need a PEG otherwise he should be transferred to the palliative care section of the hospital and let him die. I agreed hoping that he would recover and at least get back some abilities. For me, it was not an option to change to palliative treatment after giving him 6 weeks of curative treatment. Fortunately, with the PEG and logotherapy he was able to learn eating and drinking by himself again. But nothing else improved. He is now in a nursing home and I think, he is depressive and unhappy although we visit him almost every day. It is so cruel, he can only say nananana, cannot read and I think cannot understand everything. He was a doctor of philosophy and literature in his former life. Now he is 91 years and he sometimes cries when I visit him. It is so difficult for me to understand all this.
      February 2020

      Dorothea / (in reply to annette dancer) Reply

Leave a Reply

Your email address will not be published. Required fields are marked *