Trajectories of disease in palliative care

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Published: 24 Mar 2017
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Prof Scott Murray - University of Edinburgh, Edinburgh, UK

Professor Murray talks with ecancer at IAPCON 2017 about the trajectories of disease in palliative care.

The concept of palliative care is usually not introduced to the patient at an early enough stage in their disease.

Professor Murray explains the initial circumstances that might lead to a patient being included onto a palliative care register but also emphasises the importance of ensuring that patients are treated holistically and given the optimal treatment for their condition.

He outlines the three basic ways in which people die and the fact that at any given time the majority of patients on a palliative care register will be declining slowly through frailty rather than rapidly from an advanced cancer.

Professor Murray goes on to talk about the different aspects of palliative care: physical, social, psychological and existential, and how these may change during the course of a patient’s care journey.

To conclude he talks about his own experience of cancer and of being listed on a palliative care register.

The first part of this bit, in fact, is to look at some general indicators of decline. For instance if someone has been to hospital a couple of times recently or if someone has maybe been admitted to a care home there’s probably a good reason that they’re going downhill a little bit, so an indicator of physical decline by itself. So, for instance, a volunteer health worker if you’re here in India or wherever would be able to actually identify people that way. So people who are actually positive for that recent decline then can be looked at by a health professional to say why is it that possibly… what physical aspect is it we could look for? And it might be with heart failure, they could be in the grade 4 heart failure or indeed recently admitted to hospital; if it’s in the liver failure it could be because there’s been a recent admission for ascites that has been drained or there are physical aspects in every condition with dementia – it could be they are now unable to dress themselves. So in some ways you can check over the physical reason for it and that also helps us make sure that the person is getting the optimal curative disease managing care as well as the palliative aspects.

The third part of this bit is a reminder of actually what then to do to make sure the person is on optimal treatment and assess them holistically. On the back of this big sheet, if it can be used as a sheet on a table to remind the doctor to do it, is actually how this could be used in practice in the community. So it could be used just if people are coming in and there’s time you might then go ahead and identify them and start a conversation to explore the possibility of a palliative care approach.

So sometimes people ask how do you actually start this approach for palliative care? Actually what we’ve found is to explain to doctors that in fact most people who have had a brush with death often have competing narratives or two stories in the back of their mind. If you go up to them and say, ‘How are you today?’ they will say, ‘I’m fine, doctor,’ so they’re telling you their public account. However, if you go up and maybe take a little time and say ‘Hello, you’re cheerful today but are there ever days that you maybe don’t feel quite so well?’ most people in fact would say, ‘Come to think of it, yes there is like that.’ Because as well as the public account there’s a more private realistic account of what the future might hold. So that’s how we can get into this second paradigm of being more holistic and planning ahead.

Could you discuss what you covered in your talk?

Palliative care is actually internationally associated with imminent dying. So in palliative care, whichever country we go to, whether it’s the UK, India, South America, Africa, it’s very much associated with dying. So palliative care providers often actually… so palliative care usually comes late. No people actually say, ‘I’d like palliative care,’ no-one wants to die and most health professionals actually associate palliative care with imminently dying.

We did a study recently in Scotland showing that actually if someone benefitted from palliative care on average that was started only eight weeks before they died. Patients with cancer, 70% of them actually got the support by the time they died but if they had other illnesses they died too soon, before they could benefit from palliative care.

To try to look at how we can better encourage health professionals to think early rather than later with palliative care we’re starting to advocate for early palliative care. So if we think of actually the trajectory or the physical trajectory of decline at the end of life for people with progressive cancer, quite often such people are reasonably stable, possibly with a cough or whatever, and then in the last number of weeks there’s quite a rapid physical decline at the end of life. And it’s when people start rapidly declining is when people normally get palliative care but that is, in fact, much later than it should be. The WHO clearly for many years have said palliative care should start at diagnosis of a life-threatening illness, it’s not when it becomes incurable, which is normally what happens now.

So how can we start at diagnosis? Well, take lung cancer for instance. Most people at diagnosis have got advanced disease but even in that illness the trajectory is quite prolonged before it goes down. We’ve studied hundreds of people dying with progressive cancer, asking them about what dimensions of the need they have at different aspects – is it physical, psychological, social or existential? We’ve managed to plot, actually, these four trajectories of end of life decline in these dimensions. So the physical goes a bit like that; the social decline, when people talk about social needs, tends to track the physical so it goes in parallel like that. But what about the psychological decline? In the old days they thought that people get more and more depressed and anxious and they die but that is not true because at diagnosis when I had cancer a couple of years ago I was told, ‘You’ve got cancer,’ it does make you think a bit, a bit worried initially, you may think, ‘Why have I got it?’ So at diagnosis of a cancer the existential and anxiety are quite… there’s a level, there’s a dip in that. And then you get to hospital and you get a treatment, you cheer up a bit, the nurses are happy and then you get home and it goes down again. Then it gets a bit better again and then down again at recurrence and possibly down again at the end of life. So in most progressive cancers, knowing that, I know that my patients actually will have a low time around diagnosis, after treatment, at recurrence and towards dying. You can share that. For instance, I’d say, ‘You’re off to hospital to get sorted out, you’ll feel anxious just now but come back and see me afterwards,’ speaking as a general practitioner, ‘then we can check out how you are.

So knowing these multidimensional trajectories actually allows me to plan care. I sometimes share that with patients and people actually like to know what the future may hold. We may say, ‘Well, I don’t know exactly’; someone says, ‘How long have you got?’ you can say, ‘I don’t know how, that’s a hard thing to say, but let me tell you what it’s like for most people with your condition.’ And people quite like that because it’s not personal, it’s not too threatening but it will give them an idea of how it might be for them.

So I put it to you, knowing these multidimensional trajectories is helpful, it helps us feel not important but we know where we’re going and it helps us so it can empower patients, professionals and carers. Family carers of people with advanced cancer go through the same helter-skelter psychologically and existentially as the person who is dying. That has been again shown, we’ve published that research in The British Medical Journal. They also go through… you shouldn’t be surprised at that – if you had cancer your wife might actually think a bit about that as well. So patients and their family carers are all going through that.

Could you talk about a typical palliative care case?

The illness of typical disease trajectories, of physical decline at the end of life, have been promulgated by Joanne Lynn in the States and myself in the UK for about twelve or fifteen years. They now appear in undergraduate medical textbooks, so they’re quite established. Nowadays there are three basic ways of dying; in the old days people used to die of acute things and all in one sentence and Joanne would say nowadays most people die in one of three ways. One is quite a rapid trajectory of decline, typically cancer; the second is a more up and down intermittent one, typically of organ failure, heart, lungs, kidney or liver, and the third is a more prolonged dwindling trajectory, typically of frailty or cognitive decline such as dementia.

So about twenty patients die a year for a GP, four from cancer, five or six from organ failure and seven or eight, in fact, are on the more dwindling trajectory. So I’ve given you the numbers for people on each trajectory but because it takes longer, if you want, for people with the dwindling to die than the people with cancer the actual prevalence of palliative care need at any point of time is skewed heavily to those with a dwindling trajectory. So most people who need to benefit from end of life care in fact are on that third trajectory at any point in time. So if a GP has a register of people who could benefit at a point in a time there will be a large representation of those group. Now, in those group of people the word palliative care does not appear, they maybe go to a care home, but they need this approach. I wouldn’t suggest that they should be branded as palliative but what I would suggest is they would benefit from a holistic approach.

We’ve shown that such people, gradually physically declining and then dying, that quite often they have social wellbeing that goes down but quite often the social and psychological and even existential distress, there’s a dip in that before the person dies. Knowing that means that people can not only just monitor how they are physically but they can keep an eye open. If someone starts showing distress or says, ‘I’m awfully scared about going to a care home,’ they’re anxious about something and therefore address that problem. Or if they say, ‘I’m wondering if I’m going to lose my marbles, getting dementia,’ talk about that. Addressing the patient goals, so rather than in old people they often don’t want to talk about death and dying because more important things could happen to them, more dangerous things like going to a care home. So it’s addressing their needs where they’re at, that is good palliative care.

Could you talk about how your personal health has affected your work?

Yes, so exactly three years ago I had been coughing for a few months and I went to the doctor as I should and I got an X-ray that I couldn’t miss. He sent me quite quickly for a CT scan and he said, ‘I think there’s a problem here.’ So I went up there and in fact it confirmed that I did have lung cancer, although I wasn’t a smoker, so I thought, ‘Oh.’ I keep teaching the medical students you should think of other, beyond cancer, things and I get cancer myself. So I sometimes teach these multidimensional trajectories so I can confirm that at diagnosis of that cancer, although I was physically fine, coughing a little bit, it did make me think a bit. My wife actually thought a bit about it as well and I wondered a bit why have I got this. So I didn’t need palliative care at that time but a doctor, or a GP, who actually understood that probably it was a bit stressful. So I found my GP and colleagues very helpful and I phoned up to the GP. They would give a bit of time, so the palliative care approach, part of it isn’t about doing something, as often as not it’s actually just about listening and having time to be with someone.

So early in such cancer trajectories it’s good for people, even a surgeon should say, ‘Hey, this will be difficult just now, you’ll feel better soon.’ So I think surgeons actually prefer the concept, the principles, of palliative care rather than the palliative care approach but the idea is that this idea of being holistic and listening to the person and talking a bit about their future is really helpful. So I got an operation, I didn’t need any of the toxic treatments, and three years after my chest X-ray is clear so I’m fine. I was on my GP palliative care register, in fact, because I had a diagnosis of lung cancer because most people with such die, which was a bit scary, actually, because I didn’t want to go there. But eighteen months after that I came off the register because people who have survived lung cancer for eighteen months will probably go on and live. So I was pleased about that and it felt good, I felt good, which was a bit silly because it’s all about that palliative care word again.