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BRITISH BROADCASTING CORPORATION
RADIO SCIENCE UNIT
CASE NOTES
Programme No. 9 - Palliative Care
RADIO 4
TUESDAY 27/03/07 2100-2130
PRESENTER:
MARK PORTER
REPORTER: TRISHA MACNAIR
CONTRIBUTORS:
JOHN ELLERSHAW
CLAUDE REGNARD
DAVID WILKINSON
NIKKI SAWKINS
KERI THOMAS
PRODUCER:
PAULA MCGRATH
NOT CHECKED AS BROADCAST
PORTER
Hello. Today's programme is about palliative care - a growing speciality dedicated to looking after people whose illnesses are advanced, progressive and incurable, with the aim of achieving the best possible quality of life for both the patient and their family.
We'll be exploding some of the myth and prejudice surrounding the use of drugs like morphine in people who have terminal illnesses.
And I'll be finding out about the gold standard approach to delivering palliative care, theoretically available to anyone who's in the end stage of their illness - irrespective of whether they are being cared for in hospice, hospital, nursing home - or indeed their own home.
My guest today is Professor John Ellershaw, he's a consultant in palliative medicine at the Royal Liverpool University Hospitals and Medical Director of the Marie Curie Hospice.
John, for most people the term palliative care and indeed the term hospice, is synonymous with cancer - why is palliative care so cancer orientated when actually most of us die of something else?
ELLERSHAW
Well I think about 25% of the population still die of cancer so it's important to have good services for cancer patients but it's increasingly recognised that the same skills around pain control, other symptom control, the psychological and social support that patients need with terminal illnesses should be and can be made available to other patients as well.
PORTER
Because historically I mean the service has gone up on the charitable side, hasn't it, been provided by hospices, funded by donations and that's been specifically to look after people with cancer, there's been a big gulf between what's been going on in the hospice movement and the NHS, is that gulf closing, is the expertise travelling back and forth now?
ELLERSHAW
I think it is and you'll hear some of the tools and framework a little later in the programme but the Liverpool Care Pathway for the Dying Patient and also Gold Standards Framework is applicable both to cancer and non-cancer patients. So I think increasingly we're looking at ways of expanding our palliative care expertise to cover all conditions.
PORTER
So in a clinic like yours you might be seeing someone with breast cancer that can't be treated as well as somebody with a condition like heart failure, for instance?
ELLERSHAW
We may now yes, that's increased over the past five years.
PORTER
And your objectives are what? You can't cure the patient so what are you trying to do?
ELLERSHAW
Now I think in some ways what the hospice movement and where palliative care expertise is is about that shift from when we can no longer cure a patient but when we need to have the focus of care, particularly in the acute hospital setting - it is about curing patients and getting them home again, whereas in palliative care we look at how we can best enhance that patient's quality of life. So we look at the physical distress, psychological, social issues, as well as spiritual issues concerning patients at that time in their life.
PORTER
And physical distress would principally mainly be pain?
ELLERSHAW
Well I think pain is one symptom, although there are many advances in pain control but other symptoms, such as nausea, poor appetite, lethargy, low mood, anxiety - those kind of symptoms are also quite common in our population.
PORTER
And who's delivering palliative care - doctors, nurses, a multidisciplinary approach?
ELLERSHAW
Yeah I think the - in order to deliver best care we have to have a team of people and that would include specialist nurses, occupational therapists, physiotherapists, social workers, psychology and also linked with many palliative care services, particularly in hospices, volunteers who contribute a great deal to our - the comfort of patients and their families.
PORTER
I said in the introduction there John that it's a growing speciality and certainly when I qualified in the '80s I mean I don't remember a single lecture on palliative medicine, but that's changed a lot hasn't it.
ELLERSHAW
Yeah I think Mark when we were students I think it was unusual to have palliative care education within the medical curriculum but now throughout most of the UK medical schools palliative care is a core component. And certainly at Liverpool Medical School our students in the fourth year spend four weeks based in the hospices in the region learning the palliative care approach and seeing how we care for patients, not just whom are dying but also have complex issues who we can deal with and then discharge home again.
PORTER
Well as we have just heard, one of the key objectives in palliative care is to provide pain relief where required and keep patients comfortable. And when it comes to treating moderate to severe pain, there is nothing better than morphine and related drugs from the opiate family.
But they have a mixed reputation. Their use is often perceived as the beginning of the end, or sometimes even as a way of hastening that end. And then there are unwanted side effects like sedation and loss of control. But in reality, when used properly, morphine is extremely safe, and the only troublesome side effect with long term use tends to be constipation. Dr Claud Regnard is a consultant in palliative care medicine at St Oswald's Hospital in Newcastle and keen to correct the misconceptions.
REGNARD
It mimics the natural chemicals we have in our own bodies called endorphins. These are intriguing chemicals whose action in part is actually to give pain relief. And morphine is a natural compound that mimics these, latches on to the same receptors as endorphins. But not just pain, it's also used for managing troublesome breathlessness. So it has a number of purposes, it's now become the mainstay of use, particularly in palliative care although we now have at least four other alternatives for some people who don't tolerate morphine.
PORTER
But how do you actually start a patient on morphine?
REGNARD
Doses don't mean much except for the individual patient, so each patient has to be looked at as an individual and then gradually increase what we call titration. I mean it can be anything per day from 10 or 20 milligrams per day right up to 500 milligrams or more. And our reason for adjusting is because morphine and this class of drugs have a remarkable property. Now that is that many of the side effects wear off very quickly, people say well it must be nice to be on morphine because you feel high, actually patients would hate feeling high because they'd feel out of control. People say oh it must be nice if you're anxious because you feel drowsy, but people, same reason, don't like feeling drowsy. Fortunately things like feeling high wear off so quickly that patients never experience that. Things like drowsiness equally wear off certainly within days. Even things like nausea, which we can manage with anti-sickness medicines usually find after a week or two you don't have to carry on using the anti-sickness medicines because that's worn off. There are two effects that don't wear off. Now one is constipation and people say yes I've had terrible problems but usually it's because they're either not on the right laxatives or they're not on enough laxatives. But the other effect that doesn't wear off is pain relief and it's one of those myths that people think that morphine will wear off over time and that has made people feel very reluctant about starting morphine and say well I really think I should keep it until things get very bad. Well they don't have to do that because it'll keep on working.
PORTER
A lot of people believe that morphine shortens life, that hastening death is an inevitable price for being comfortable, is that the case?
REGNARD
It worries me that people still think that morphine is a drug that has to be used with considerable caution. Now in some ways that is true - it's like a powerful car, as I say, you don't get into a powerful car and switch the engine on and put it into gear and put your foot flat on the accelerator but don't touch the steering wheel - you're going to crash. The same is true of morphine. What is I think very concerning is that if I went back to work, as I'm going to very shortly, and I gave somebody 60-100 times their dose of insulin I would expect to be suspended, I'm sure there would be a court case and I'm sure I'd be up in front of the GMC. And it's very worrying that people think well it's okay to do that with morphine, well the answer is it's not. But if you use it sensibly and appropriately and use it in the way that people in palliative care use it then you're dealing with something that is very safe and very helpful for patients. As I had one patient once said to me, he said: "Look do you remember what I said a few weeks ago?" I said: "What was that?" He said: "Well you know when I was feeling I wanted to end my life really and ..." he said: "...you're not going to do that are you?" I said: "No." I said: "Do I need to do that?" He said: "Absolutely not," he said: "My pain is fine, I want to carry on now and live my life to the full for however long I've got."
And when you get that sort of restoring of life back to people because of good pain control that makes such a difference to people and there's no question that morphine is an important part of that.
PORTER
Dr Claud Regnard talking to me earlier from our Newcastle studio. You are listening to Case Notes, I am Dr Mark Porter, and I'm discussing care of the dying with my guest John Ellershaw, who's Professor of Palliative Medicine at the University of Liverpool.
John, I want to clarify that issue that the prescribing of strong painkillers is somehow inexorably linked to hastening death - that is a myth?
ELLERSHAW
I think it is and I think it's been well evidenced now that in fact good pain control, whether that be morphine or other strong painkillers that are commonly used now in palliative care for pain control in fact can prolong life because in fact if you have chronic pain that in itself is exhausting, if you can relieve pain then people can live full lives for longer.
PORTER
Now people who have a terminal illness of course the pain's not their only problem, you said that you work in a multidisciplinary speciality, what other sort of problems do you have to deal with?
ELLERSHAW
I think we have a very expert team of people that I work with including our nursing staff, our social workers, occupational therapists, physiotherapists, pastoral care workers and also many volunteers that help support the work, particularly within the hospice setting. I think within that team we all have our specialist expertise to support the patient and their family. So, for example, a patient who has got a far advanced disease, I remember, who in fact became so unwell that couldn't move at home, was a single parent with an eight-year-old son, who refused admission to hospital and in the end said they would come into the hospice. On admission had very bad breathing problems, had not discussed the future with her son and had made no guardianship arrangements for him. And I think that the last weeks of that lady's life was spent I think as comfortable as possible with the medication that we could give her for her breathing problems but also with the rest of the team working through the issues of communicating with her son and her extended family putting plans in place for his care into the future.
PORTER
And actually when we're talking about hospices a lot of people see them as a one-way - a one-way track, that you go into a hospice and you never come out, but that's not the case?
ELLERSHAW
Yes a patient recently who came in, said to me he was worried about coming into the Marie Curie Hospice because people only came there to die and was not keen at all but once he'd been in, only after three or four days were his symptoms controlled and we talked about going home and the first thing he and his wife said to me is if and when he's ill again can he come back here rather than hospital. And I think for us that's a common experience for patients. So if anybody's out there worried about going to their local hospice I would say that our experience is that once you've been there the kind of care and support you get you will value and want to embrace.
PORTER
And of course we've talked about inpatients - people coming into hospital, coming into hospices but you actually also see people as outpatients like in a normal clinic.
ELLERSHAW
Yeah we see many people, over 3,000 episodes, at the Marie Curie Hospice in Liverpool and each year of outpatients who come to the unit around seeing not just doctors but also the other healthcare professionals linked there for problems that we can help them with to enable them to continue living life in the community.
PORTER
Well the NHS does have an End of Life Care Programme designed to help a range of different carers meet the physical, psychological, social and spiritual needs of the dying. Now included within that programme is the Liverpool Care Pathway - a guide for carers to help identify and deal with problems that may arise in the last few days or hours before a person dies. It was developed to take the best standards of care from within hospices and extend them to hospitals and other settings. David Wilkinson is a staff nurse at the Whiston Hospital on Merseyside.
WILKINSON
The key ingredients are things that we need to be concerned about with a dying patient: their comfort, pain levels, we don't need to keep putting needles into patients that we know it's going to have no effect, so rather than start doing procedures for the sake of doing procedures we take a side step to a better level of care without starting all tests when we know that the end result is the person will unfortunately die. But we give them the dignity.
PORTER
So who's making the decisions about what's appropriate and what's not appropriate?
WILKINSON
The decisions very often will be a multidisciplinary approach - the consultant looking after the patient, the nurses looking after the patient - everyone holds a responsibility within that patient care.
PORTER
What about the patient themselves and their family?
WILKINSON
In the early stages if they're able to communicate certainly. With families I think it's very important that you explain to them that you're not removing care, you're changing the level of care because very often it's quite easy if you see drips and various things hanging off the patient subconsciously you feel something's happening, something's being done. But that's because there's an active treatment ongoing that will have a beneficial effect. So you start removing these things that are counterproductive, they're not working for the patient, it won't have a benefit. We may sit down with the families - I've done myself on many occasions - and explain what's going on because I feel that towards the end of life it's quite difficult for the relatives.
PORTER
The whole concept of palliative care can be a difficult one to raise with patients and their families, as you said, you know, it probably may be the first time you might have mentioned death.
WILKINSON
Sometimes it is very difficult - my preference is to take the family away from the ward environment, perhaps into the office or the day room, and close the door and sit down with them and I can check what level of understanding they have of the situation at that time. It may be that they're fully aware, they've been updated by the doctor, they've asked questions and they have been told that the outcome is not good. Sometimes patients' relatives will go into a denial stage - it's not going to happen to their relative as far as they're concerned. And that's fine, we have to allow that, it just means that it becomes that much harder towards the end when the death actually occurs.
PORTER
What happens if the family or indeed the patient themselves ask you about timescales you know how long as he or she got?
WILKINSON
Timescales is probably one of the questions that nurses and doctors are very reluctant to answer. Not because we don't want to answer them but each person is considerably different. Some patients may be lasting for a week or more in a very comfortable relaxed state before the final day arrives, other patients it can literally be a 24 hour period and they pass away then - the death occurs. So it's very difficult to turn round and say to a patient or a relative you have x amount of time.
PORTER
And how confident are you when questioned, I suspect by relatives mostly, about when the end comes how distressing it's going to be for the patient, I mean when they look you in the eye and say are you confident using your care pathway that you can make it an easy transition for my father, my brother, my sister, whoever?
WILKINSON
Yes I think - I think all nurses can and hand on heart I certainly can and have done on many occasions. And once the care of the dying pathway comes into play wherever they will be in their last days - whether it be a hospice or it be a hospital or even at home - then that format will provide the patients and the relatives with comfort and dignity in those last days.
PORTER
Staff nurse David Wilkinson.
Well the latest progress report on the implementation of the NHS End of Life Care Programme shows adoption varies tremendously depending on where a person is being cared for. The Gold Standards Framework is another component of the programme designed to be implemented much earlier in a person's illness, and aimed specifically at helping people who are cared for in the community. But, at the beginning of 2006, while at least part of the End of Life Care Programme had become standard practice in most larger hospitals, it was only being followed by 1 in 10 community hospitals and even fewer care homes.
Marian explains to Trisha MacNair how her father's care was handled towards the end of his life:
MARIAN
Well my dad was 78 and diabetic, he had irritable bowel syndrome, but had also had a series of small strokes. My mum was not much younger than him and arthritic and was finding it harder and harder to look after him. Eventually he deteriorated to the point where he was doubly incontinent and she just couldn't cope, so it became clear that something would have to be done. So we sat down together as a family and at the time, although he did have dementia, it was a fairly mild form of dementia, and I think even he, after a series of small strokes, realised that it was just too much for her to cope with.
MACNAIR
Marian's father moved to live in a home where he could get the nursing care he needed. Like most residents he was to spend his final days there. But although one in five of the population die in care homes staff working in them aren't usually given much training to help the residents and their families to plan and prepare for their death. Instead the fact that someone entering a home would most likely die there has tended, in the past at least, to be quietly ignored.
MARIAN
We never had any sort of discussion about what would happen to him, what the plan was, and in fact I think for a long time both he and my mum thought it was a kind of short term care package where he would eventually be able to come home. But now an NHS initiative to improve the care offered to people at the end of life has turned its attention to nursing and residential homes. The Gold Standards Framework, or GSF, aims to provide tools and resources which will help health workers to improve the planning of palliative care for their patients in the community.
Nikki Sawkins is the lead nurse for implementing the GSF programme in care homes.
SAWKINS
We've brought the hospice ethos and care into any setting, so it can be within somebody's home, within a care home setting or within a hospital setting.
MACNAIR
And what sort of comments did you get from people working in the care homes before GSF had sort of been put into place, is this something that the workers felt desperate for help with?
SAWKINS
Yes the enthusiasm and the passion of getting care right, particularly in the last years of life, has been very evident from what has been fed back to us. There's been a lot of very positive feeling around, the confidence building in palliative care, about the continuity, about the better team working but it's inspired them with confidence and has allowed them to give, they feel, a better level of care.
THOMAS
We feel very strongly that this is about living well until they die. So this is about care in the dying stage but it's all about care before that and how they live well in the final year or two of life.
MACNAIR
GP Dr Keri Thomas is the National Clinical Lead for Palliative Care in the NHS end of life care programme.
THOMAS
Initially it started with primary care - with GPs, district nurses - and the Gold Standards Framework now is used by over a third of GP practices in England and more in Scotland and now we're developing a way of within a care home what kind of framework is right for them to enable best care. And basically in many ways it's not rocket science, it's bringing things together and formalising good practice so it increases the consistency of care.
MARIAN
Had there been some long term plan discussed I think we would have all felt much more secure and much happier that he was in the hands of somebody that understood what we needed. It was very much looking at him as a problem that had to be handled as quickly as possible but within the confines of the system.
MACNAIR
What about when he develops pneumonia right at the end, do you remember how actively he was treated and whether they talked to you about what the sort of feeling was about how he should be treated?
MARIAN
We weren't really consulted about how he should be treated at all. And I think they were giving him very good care but I don't think they had any real thought that he would recover, although that wasn't discussed with us and I wish it had have been because I think had we known how poorly he really was we would have handled it in a very different way, it would have given us time to prepare for his death which in fact we weren't able to at all, it was a complete shock when he died. And also it would have been easier for my mum; my mum wasn't there the day he died and I think had they told us how sick he was it would have given us some sort of notice that we needed to make plans.
MACNAIR
The Gold Standards Framework consists of three elements: to identify the patients, assess their needs and plan ahead, as Keri Thomas explains.
THOMAS
Part of identifying is trying to assess where someone is in relation to their illness, whether they might have several years to live still, whether they're deteriorating and might only have months, they might be deteriorating rapidly and only have weeks or days to live. And the key thing is that we give different care at different times. So people refer to this coding, which is a rather funny term but it's a way of estimating where we think someone is in their illness, so that say someone might be living for several years we introduce certain things then, if they're actually dying and only days to live then you have to stop some things and start some other kind of care.
MACNAIR
Many of the care home workers who have started to use the GSF have found the idea of coding very helpful, enabling them to understand the best way to manage each resident's current needs, and anticipate future health problems. By using the GSF it should be possible, for example, to avoid sending residents to hospital when it would be more appropriate to treat them in their home.
ATUALITY OF CARE WORKERS
But I think the hard decision that we have to make clinically is when someone might not benefit from hospital admission and some people describe it as - some people are too sick to go to hospital and they need to be cared for.
... very, very sick. Really.
Another strand of the GSF is to develop an advanced care plan for each care home resident.
SAWKINS
It's about how you want to die, where you want to die, what do you want to be happening around that - you know who do you want to be at the bedside, right down to what sort of music you want playing, whether you're going to want the doctor or the priest to come or whatever. So we can put all that into the advanced care plan.
THOMAS
Yes because we actually admit under criterias, so if it's an admittance for palliative care then yes we do discuss bereavement and dying and the family's wishes and the individual's wishes. If they're admitted with nursing care needs, which are not a chronic illness but they still require nursing care, then we don't on admittance discuss death and dying, even though our policy says we should because in the past we've hit resistance and we tend to find that they're in an emotional upheaval when they're first admitted anyway.
PORTER
Trisha MacNair reporting.
Professor John Ellershaw - lots of programmes, standards, protocols, pathways there, the terminology's confusing but the key issue seems to be that there is a good framework that can be followed wherever you die, whether it be at home or whether it be in hospice or a hospital but the implementation can be a bit hit and miss. Now you helped develop Liverpool Care Pathway - do you think enough people are using it?
ELLERSHAW
I think increasingly across the country, helped by the initiatives from the government, these tools are being rolled out and things similar to them can also be used in healthcare settings. So I think that it's important that healthcare professionals realise that these or similar tools can be used to enhance care - care of the dying and care in that terminal phase of patients' illness.
PORTER
I suppose the question that'll be in our listeners' heads is right you know if a relative of mine is dying how can I ensure that they and we as a family get the help and support that they need, in other words how do we access the very best that modern palliative care in the UK has to offer?
ELLERSHAW
Yeah and I think that what's particularly hard is I guess that some people listening to this programme may well be struggling at this moment in time. I think that they need to talk to their GP and probably their district nurse that they have contact with about how they can get more help or additional information. And then on top of that they could ask for referral to the palliative care services if they already haven't got that. That may be through the Macmillan Nurse in the community or through the hospital palliative care team if in hospital or from directly linking with the hospice.
PORTER
And this is generally easier for patients with cancer isn't it because there's a good link between the oncology services in a hospital and departments like yours, there's people like Macmillan of course with cancer specific referring into systems like yours, but if you're at home with a heart condition that's not going to get better it can be a bit more difficult, your consultant might not even mention palliative medicine.
ELLERSHAW
No increasingly those services are linked to palliative care services, particularly for advice. Maybe a direct admission to hospice for some of those diseases may be more difficult but certainly hospices do take non-cancer patients. And hospital palliative care teams see up to maybe 20% of their population is non-cancer. So that interface between palliative care for cancer and non-cancer is increasing.
PORTER
Do you think another problem is denial - we're not very good at talking about our ultimate demise?
ELLERSHAW
Yeah I think that one of the issues - you only need to walk into a popular bookshop and look at the amount of books that are there at the beginning of life about birth plans, about antenatal care, there'll be book shelves of them, if you try and find one book on the care of the dying or how to cope with terminal illness you'll struggle to find any information. And I think that we need to be advocating more information within society, I think websites can help with that but many people perhaps don't have access to the internet as yet. So I think that we need to demystify death and dying within society and I think that is increasingly happening.
PORTER
I am afraid we must leave it there. Professor John Ellershaw, thank you very much.
Don't forget you can listen to any part of the programme again via our website that's bbc.co.uk/radio4 where you will also find some useful links for more information on today's topics. Or you can put a question to Dr Polly Edmonds who will be joining Barbara Myers to answer your queries about palliative care in this Thursday's Check Up. You can email your question via the website or call 08700 100 444 - lines are open from 1:30 on Thursday afternoon.
This is the last programme in the current series of Case Notes but we'll be back at the beginning of May. So please do get in touch via the website, or the Action Line, if you have a subject that you would like us to cover.
Until then, goodbye.
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