Tuesday, June 18, 2024

Scott Murray | Life and Death

by Domhnall

The Trajectories of Death, Dying, and Palliative Care

Scott Murray brought death to the forefront of the primary care conversation- what patients wish to know and how we can make it better

Scott Murray MBE, FRSEd  is Emeritus Professor of Primary Palliative Care at the University of Edinburgh. He founded a research and teaching unit within the department of General Practice at Edinburgh University so that people with life-threatening illnesses might access personalised supportive care from diagnosis of any progressive illness – probably the first such in the world.  He has published widely in the BMJ, Lancet and specialist journals, and publically advocates for “early palliative care” internationally.   His research recently resulted in progressive new Scottish legislation to enable patients and carers to receive earlier support and care to help them live and die well. Ten years ago he established a European network to fast-forward palliative care in Primary care in every country, and has recently helped establish similar networks in Africa, Asia-Pacific region and South America

 

“People die in different ways, with different diagnosis, different illnesses, but they can be grouped. There’s a group who die of cancer, which is quite predictable and relatively fast, and people understand that a bit- professionals and  patients. But organ failure, which is a trajectory that goes up and down, people don’t understand that as much. That was the typical organ failure picture such as with lung, heart, liver. And then there’s a more dwindling trajectory with frailty of dementia.”

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Let’s bring you back to the beginning. Where did it all start?

Children’s ward in Chogoria Hospital was always very busy, with a separate unit for burns, and infectious diseases

Scott with the hospital matron Karimi Raini in 1984

Iain returning to Chogoria with his mum to meet the midwife who delivered him 40 years ago

Scott presented with a sword and spear, a sign he had been a warrior for health in Kenya!

Scott Murray:  I was born in Glasgow, but I went to Aberdeen University to study maths. And that was my first love. But I became a Christian at that stage, and I thought I could probably do more good being a doctor so I changed into medicine.  I met my wife Mary there.  We both graduated and started  GP training in one of the first schemes  in Aberdeen.

After that I went abroad to work in a rural church hospital in Kenya. Those were great times in our life. When we went out we had a wee girl six weeks old.  We spent seven years there and had a glorious time. There was a lot of a medicine to do, of course, general stuff, surgical, a lot of infectious disease in those days; Leprosy, TB, and many people dying of measles, pneumonia and malnutrition.

Interestingly family planning was the agenda at that time and you could get more funding for that. The average completed family size in Kenya was 7.4, and with making that available through the health committees and volunteers, that number went down in ten years to 4.8. That was promoting health for exhausted women.

DMacA: You did was something that many doctors of your generation did, inspired by their own beliefs. Tell me more about the work, because many people wouldn’t really appreciate the type of work that you were doing there.

SM: Well, I was out there working for the church so you were responsible to them and the idea was to help to run the large rural hospital.  The funding had to be got from patients, which was a real constraint sometimes.After six months I was asked to manage it as well.

There were five doctors, 250,000 patients, a nurse training school, and  30 clinics, all within walking distance for the local people. And the idea was to improve their health through primary health care. There was a surgeon from Glasgow there at the same time and he dealt with a lot to the surgery. It was a busy time, it was a hard time, but it felt very worthwhile.

At weekends we sometimes went to the local churches where there was an opportunity to talk. And we learned the language.. We still speak Kikuyu and return every year.  More recently, I helped to integrate palliative care as promoting health at the end of life-ante-mortem care.

DMacA: And were your family born out there…

SM: Iain who’s an orthopaedic surgeon in Edinburgh, was born there. His name local name was Mwenda.  We went back just last year for the centenary of the hospital opening.  His midwife was a small lady and Iain’s now over six foot!

 Susie was six weeks old and  Andrew, our eldest son, remembers it best. And yes, it was great. But we worked hard and we had some lovely holidays in the game parks and down the coast as well. We look back at that time very fondly and very formatively.

“We noticed that the folk living in Dumbiedykes were having a rough time and I was asking them, what are the main issues you’ve got here. Do you know what they were?   It wasn’t medical. It was that they wanted a bus so they could get up to the shops. …. So there were a lot of things. But, I’m the doctor who got the bus in there.”

The greatest perceived need in Dumbiedykes was a bus to get folk to the shops

A nurse interviewing a patient with cancer in rural Kenya

DMacA: Coming back to Edinburgh must have been a huge contrast…

SM:  I was offered a job at Morningside, a posh suburb. After six months, the partner said “I don’t think you’re cut out for Morningside.” So I spoke to Prof John Howie at  Edibnurgh University and he offered me a job at the University practice.  So we did that and one day and he said, “Well, you know, you had better do a  PhD.  ”  I’m not really an academic guy but I was working in that part of Edinburgh called Dumbiedykes, a poor neighborhood. I noticed that the folk living in Dumbiedykes were having a rough time and I was asking them, what are the main issues you’ve got here?  Do you know what they said?   It wasn’t medical. It was that they wanted a bus so they could get up to the shops. The younger people wanted the areas outside their flats with no dog poo on them. And we noticed that the most frequent operations people were getting were for dental carries. So there were a lot of things.  So I was known as the doctor who got the bus.

This is community oriented primary care in practice in Scotland, which was actually defined in 1926 by Kark in South Africa. That’s looking to the community and promoting a community development approach.

And because, out in Kenya we’d been teaching the enrolled community nurses how to help people, someone from a dispensary might come to you and say, I want a hospital clinic in my village. And so we d had to ask how do we know if it’s really indicated? The nurses were trained to look around, to observe, to interview people, to see what documents. And that’s a method called “rapid participatory appraisal”  So I did one of those in Dumbiedykes, and it comes from a development background. And since then I’ve used that technique about 15 times doing different things like, for example, bringing a community development approach to services, learnt out of Africa.

DMacA:  Tell me then about the progression of your academic career.

SM: Apart from the deprivation angle, people with advanced illnesses around there weren’t having a great deal, unless it was cancer which was, in some ways, lucky for them. And with a friend back at Chogoria hospital in Kenya, I thought, let’s compare dying.  So what I did next was the death study. We interviewed people with progressive cancer. I learned how to do qualitative research at this stage, and we also interviewed people back in Kenya. We asked them, in their native language-  “Thina yaku ni uriku?  Which means “what’s your main problem very broadly” and the same words here.

The main problem in Kenya, it was pain, or lack of money for pain killers . Whereas in Edinburgh it was quite different.  They said  –“it’s just me doctor”, it was existential.

So  in most ways it was better to die in Kenya – not physically, but in all the other dimensions, psychologically- there were people there, socially-there’s  great community support, and existentially-because of their belief in God as well.  We  wrote Dying from cancer in developed and developing countries: lessons from two qualitative interview studies of patients and their carers .  https://www.bmj.com/content/326/7385/368  Again we can learn from Africa!

 

People die in different ways, with different diagnosis, different illnesses, but they can be grouped. There’s a group who die of cancer, which is quite predictable, and people understand that a bit-  professionals and even patients. But organ failure, which is a trajectory that goes up and down, people don’t understand that as much. That was the typical organ failure picture such as with lung, heart, liver. And then there’s a more dwindling trajectory which is the dementia

Four typical trajectories of physical decline in the last years of life including multimorbidity

 

The Tango of organ failure with acute exacerbations causing dips.

 

Patients with conditions such as progressive have predictable distress at predictable points as the illness progresses

 

 

And from there we went on looking at the experience of people dying in Britain and in higher and lower income countries. We realized that  things are inequitable not only be by country or by postal code, but by diseases, “diagnostic inequities”. And then we thought, how do we understand the lived experience of people and their carers? So I went out to learn. I interviewed some people myself and appointed a proper qualitative researcher called Marilyn Kendall, an excellent researcher. We started listening to people at home who all told narratives of their illnesses. And with a series of PhD students, we interviewed hundreds of people covering lots of types of cancers, lung, gliomas, heart failure, organ failure, frailty and multimorbidity.

And we realized this. People die in different ways, with different diagnosis, different illnesses, but they can be grouped. There’s a group who die of cancer, which is quite predictable and relatively fast, and people understand that a bit- professionals and  patients. But organ failure, which is a trajectory that goes up and down, people don’t understand that as much. That was the typical organ failure picture such as with lung, heart, liver. And then there’s a more dwindling trajectory with frailty of dementia.

So we heard people’s lived experience and they were quite different.  Death as a character appears in cancer. But people with heart failure are not so worried about dying, and for people with dementia, frailty, there’s other things that are more important, like losing their marbles.

The experiences are different and the services are different so we then wrote something on illness trajectories. And over the last 20 years, building on quantitative work by Joanne Lynne in the United States, who actually started to describe this.  And, we in 2005 wrote “Illness trajectories in palliative care.”   It wasn’t cited so much to begin with but now has 15000 citations. And that concept is frequently mentioned  in medicine,  student textbooks and in the public domain.  And it shows that dying isn’t just an event at the end, it’s a process with a beginning and an end.

I even did an amateur video of dying represented as diffent dances. So, for example, Cancer is like a “highland dance”, people understand that in Scotland, it is fast,  quite predictable, with a clear beginning and an end. An organ failure trajectory, what dance might that be?  – A tango. With ups and downs – and people don’t understand that dance so well.

And, the last slow one, that has to be – the Last Waltz. So the idea is that if you know the steps, if you understand the illness, you’re most likely to be able to dance /dye well. And there’s lots of analogies such as having a carer is like a coach. In fact, we made a short video called “Strictly Come Dying” to help the public understand this in a light-hearted way.  

So that was illness trajectories work which was most enjoyable. And we did some serious publications in social science and medicine and couple of research reports in the BMJ to show the idea of interview triads in patients, doctors, and carers, and over time. So that’s multi dimensional qualitative serial interviews.

And the mantra I really liked is that there’s five aspects of helping people with palliative care  in primary care because it can help people with all diseases, as illustrated by this work. It can help at all times, not just at the end, but early on from  diagnosis. And there’s all settings as well, which is important. With all dimensions, and all countries, that’s the five.  All dimensions is important because dying is more than one dimensional, it’s a four dimensional experience.

So, as we listen to people talking about their experiences, apart from things outwith health care which lots of people have, they tend to talk about the physical bit and then the other psychological issues. And we then saw that in each of these dimensions there is a typical trajectory associated as the illness plays out.

There’s a physical one. And then you’ve got the psychological, social, and spiritual trajectory mapping out. In an analysis back in 2017 we talked about palliative care from diagnosis. And the idea was to map out in a qualitative way but actually the patients understand this as well, quite well. And we’ve created some patient-centered videos so they could understand that. So the idea is that it’s multi dimensional.

I got lung cancer ten years ago, I don’t know if you knew. It’s not a clever cancer to get of course. What I experienced and we found in patients was in the multi dimensional cancer trajectory is you’re probably physically quite well at diagnosis but worried about what’s going to happen to me. This is an existential issue for the patient- they’re worried about it.  Then they get home, they feel better on treatment, which is a time that folk, classically, are worried again, psychologically and existentially, And if it progresses, then at death. And using this illness trajectory approach we can foresee that at diagnosis, getting home, and before death there are these 3 or 4 times when you’d expect someone to have issues.

So, as a GP I would say, when this happens at least acknowledge problems in this dimension, because we can predict. Its thinking ahead and, if you’re sharing and asking the person about that, they will like that. And then, for instance in a person with advanced illness, maybe you say they don’t want to talk about these things. Well, maybe they don’t, but 85% at least if they’re given an opportunity, would like to hear what it might be like for them. And then finding out when to start this palliative care approach,  it’s hard to know.  We’ve done some work on indicators for that. There is the ‘surprise’ question. Would you be surprised if this person was do die in the next year? And it’s a good way for the GP to know when you think this person needs it, because we know the prognosis is so difficult. It’s like a red herring in some ways. If someone asks you, what’s my prognosis, doc? What’s really probably behind that question is wanting to understand – what’s it going to be like for them. It’s not just thinking  in numbers. But prognosis really means to know, to know ahead. And so the idea is that if you  are asked about that, maybe you could say- I don’t know the time, but let me tell you how it might be for you. So that was my take on prognosis.

What we show in the multi dimensional cancer trajectory is you’re probably physically quite well at diagnosis but worried about what’s going to happen to me. This is an existential issue for the patient- they’re worried about it.  Then they get home, they feel better on treatment, which is a time that folk, classically, are worried again, psychologically and existentially, And if it progresses, then at death.

DMacA: Let me finish off with a slightly different angle. And that’s I’ve heard you say that -when you know you’re going to die, it helps you live life more to the full.

SM: Yes. In my experience, when death taps you on the shoulder, it certainly triggers it. You review things.  I think the idea of identifying a time and starting to talk about that, starting out, facing it, facing up to and talking about it with patients when the future is uncertain. That entails understanding it. And then, after that, go on with living. And then the stigma of it all I think would go.

DMacA: One of the big initiatives in health is palliative care, which is a conversation that you opened up in the UK, is the Lancet Commission. That really brought it to the forefront…

SW: Yes, it was commission specifically on the “value of death”, which Richard Smith, you know him, was leading.  Anyway, I found that, in fact, there wasn’t a primary care voice on this Lancet commission.  So I complained. I ended up going to help them write it. We talked a bit about palliative care but that’s a small part actually.  We considered a “realistic utopia” for dying . What could dying, the last  phase of life, realistically look like in different countries.  We’re now trying to work out what it might do and palliative care services are part of it. There are five aspects worth looking at and the last one is actually about valuing death itself, which is a funny thing to say. But if people didn’t die, this would be a very busy place.  They say that civilization progresses by generations, so there is a value and the value of accepting dying.  We accept birth.  And accepting, thinking about it, and what can we learn from it? How can we grow by dying? But it’s such a privilege to help and be with people towards the end of life, I think. And if we understand that, we should be talking about this well before people start dying. See  https://youtu.be/dRqjkIPMBhw

DMacA: One of the things that I’ve heard you say is that we start palliative care too late, that we really ought to start at a much earlier stage in the conversation.

SM: Yes, it’s I think it’s when someone gets a life- threatening illness.  That’s the time when there is an opportunity to plan or think ahead and prevent suffering. Because if you wait until the classic terminal care in the last weeks, you’re too late to prevent all the morbidity that may happen over the weeks and months and years. Advance care planning in Scotland in non malignant peoples now starts on average 2  years before.  We don’t call it palliative care, we called it anticipatory care.  This year it’s now called “future care planning”.  The idea is that with advanced illness, let’s plan for the future.  That is complicated, especially in multimorbidity and that’s the most recent work that we’ve done.

But even in Multimorbidity, we find that you can actually summate the net dimensional problems of the different illnesses, and they can all work together. There is usually a main illness that conveys what to do. But even in multimorbidity, the idea of identifying, assess and planning and getting on with life after that, is the way ahead.

See  Using illness trajectories to inform person centred, advance care planning. BMJ 2024; 384 :e067896 doi:10.1136/bmj-2021-067896  and embedded video

And I think, I think that is the message- early palliative care. And that’s where only GP’s can do that because they’re the specialists in palliative care. To identify people for palliative care you have to be referred there and it’s the GP’s.  And they need time for this when they’re so busy doing other things. I mean, how can you have time? And that’s why a quick thing like the surprise question, or  just on a mental note that I think this person might benefit from this approach, then go ahead because there’s not many risks to palliative care. It’s not a drug, with side effects. If it were a drug it’d be very popular and it would make a company millions. But, its more complicated . “Palliatozin”. Its a very complex intervention and I don’t think palliative care, especially early palliative care, can be randomized in a trial. We need to find neater and smarter ways of evaluating its worth. 

DMacA: Scott, you’ve really opened up the whole conversation in palliative care. Your work has changed the lives of so many. Thank you very much for talking to us today. thank you very much. Thank you.

 

 

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