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Programme No. 5 - Palliative Care
RADIO 4
THURSDAY 29/03/07 1500-1530
PRESENTER:
BARBARA MYERS
CONTRIBUTORS:
POLLY EDMONDS
PRODUCER:
PAUL MCGRATH
NOT CHECKED AS BROADCAST
MYERS
Hello. For half of us death will come at the end of a terminal illness. We'll know there's no cure, no treatment, whether it's cancer, kidney or heart failure or a neurological condition, such as motor neurone disease. Much as we might wish otherwise we won't recover. So what care will we need and what can we expect as we reach our last few weeks or days?
Now most of us find it quite distressing to think about dying but fear and ignorance can only make things harder to deal with when the end is imminent, so today we do hope that you will take the chance to ask about end of life care or palliative care, as it's also known, either for yourself or for a member of the family. Your concerns may be about pain or other symptom control or how to give and receive emotional support or how to let go.
Call us now: 08700 100 444 to speak to Dr Polly Edmonds, she's a consultant in palliative care at King's College Hospital in London.
And our first caller is already on the line. Cheryl is in Suffolk and wants to talk to us about palliative care. In what context Cheryl?
CHERYL
Hello. Well I've got cancer. I've been treated in the last year but I've been told, because I actually asked, that it's likely to lead to secondaries either in my bone, brain or liver. Now having got all - said all that I've also cared for a person very dear to me who died of secondary cancer in her liver and the pain control at the end was totally ineffective.
MYERS
And is that what's worrying you?
CHERYL
Well what's worrying me is apart from the hospice movement, for which I've got a huge respect, how confident can I be of the support of a palliative care team, either in my local hospital or in my home?
MYERS
Well you're asking exactly the right person because Polly Edmonds, our guest today, is a consultant in a hospital. What can Cheryl and others who know the diagnosis and who have some concern about what care they might receive, what care can they expect to receive?
CHERYL
Well in the UK nowadays palliative care is well established in most acute hospital settings, so you should be able to, if you needed to, see a specialist in palliative care, whether that's a doctor or a nurse specialist or another member of the team and they would be able to give you advice around physical symptoms, psychological support, complex social care and any spiritual needs or information needs that you might have. But even apart from that mostly nowadays, and I'm not sure about your experience, most hospitals will have a series of cancer nurse specialists who will also be able to give you advice and support and will be able to help identify with you when you need to be referred on to a palliative care team and receive their expertise. Palliative care services also work in the community, that's often linked with hospices but not necessarily, they're doing exactly the same job as the hospital teams are doing but again they're out in the community, in patients' homes if that's where they are, and that's where they want to be.
MYERS
Is it a question of timing here Cheryl, you have your diagnosis, but of course never quite clear how long things are going to take?
CHERYL
No I'm on what's called a plateau at the moment, which means there's no indication at the moment of secondaries but it's pretty likely.
MYERS
So you're thinking ahead ...
CHERYL
I'm thinking ahead yes.
MYERS
But so Polly would the team be thinking ahead if Cheryl wanted to talk about things now?
EDMONDS
Yes and I think probably at this stage of your illness Cheryl, while you are on the plateau, as you say, I mean if you're in touch with a cancer nurse specialist in your unit some of these issues are things that you could talk through in a bit more detail with them at outpatient clinics. Or alternatively with the consultant, because I'm assuming that you are going for follow up appointments at the moment. And obviously you can explore with them if things did get worse in future what facilities are available for you locally and how you can access those facilities, so that that gives you peace of mind.
CHERYL
Okay.
MYERES
Cheryl thank you very much for that and for starting our programme today and we wish you well. We go to an e-mail from Angela Myers - no relation as far as I know - Angela is saying that she was unafraid of the dying process until she saw her mother die and what she saw was her mother writhing about and groaning, attempting to say things and she now feels extremely fearful. So is it inevitable that perhaps - her mother then died very shortly after that, so we are talking about, if you like, the death throes - is this what we can expect?
EDMONDS
I mean it sounds from what she's describing that Angela's mother in this situation was experiencing something that we call terminal restlessness or terminal agitation and that occurs in about 50% of people that are dying. I mean I think that you know in terms of identifying who's dying the signs that we look for are people losing interest in what's going on around them, getting more weak, more frail, spending more time in bed, stopping eating, stopping drinking, becoming more drowsy and often confused. And that confusion can then lead to an actual agitation when people are very much as Angela described it. Now it's important that we identify that because it's very treatable in the majority of cases with medication - with drugs - and also trying to get people into a controlled environment so they're not frightened by other things that are going on around them, so trying to get them into a calm environment and comfortable in the bed, making sure that there's nothing reversible - like they need a catheter - making sure they're not in pain, getting them on a comfortable mattress. But we can also use medication to get them more settled and more comfortable and in the majority of cases we can do that very effectively.
MYERS
Thank you, that's very reassuring indeed I think. Let's go to Maureen Miller who's in Southport and wants to talk to us about perhaps a life that goes on a little bit too long - was that your father you're talking about Maureen?
MILLER
Yes. My father died when he was 90, nearly 91, in fact he was in good health and within a residential home and enjoying going for walks and playing bowls but he said he was ready to go - all his friends had died and he was ready to go. And he said he hoped one day he'd die on the bowling green, that was his wish. And one day he had a heart attack on the bowling green when he was 90. Unfortunately he was partnered by a retired cardiac surgeon who had a mobile phone and phoned for an ambulance, he was taken to hospital and they fitted him with a temporary pacemaker. He fought them - he told me this - he fought them and said please let me go, let me go, I'm ready to go. But no they insisted and later on he was fitted with a proper pacemaker and he was backwards and forwards to hospital, in and out, with one thing and another and he died about five months after that first attack on the bowling green. Now I don't ...
MYERS
So he lingered.
MILLER
... why he was artificially kept alive for those five months.
MYERS
And was he comfortable in those five months of extra life?
MILLER
No he wasn't.
MYERS
He wasn't, no and I guess that's something that people could empathise with - the idea of lingering beyond a point where you would have wanted to go. But we can't always - but we can't always - may I put this to Polly - we can't actually always choose when we want to go can we, we might be critical there of these rather sort of heroic attempts to bring him back but we can't choose when we want to go can we?
EDMONDS
No we can't, I mean I think medical treatment has moved on enormously over the last 50 years and there are now very many things that we can do to keep people alive. I think the issue that you're raising is just because we can do things, like put pacemakers in, is that always appropriate. And clearly the answer to that probably is no for some people. And I think the absolutely crucial issue here is that we try and consult as much as we possibly can with patients and with families as to what their wishes would be. And certainly if people have very clearly expressed wishes about not wanting treatment those should be respected as long as they're appropriate for the situation that your father was in. Now I appreciate that it's incredibly difficult when things happen acutely, you know for that to be worked through in that way. But - and I think probably in the situation with your father because everything happened so quickly and wasn't anticipated the doctors were in a situation where they felt they had to do things that were possible for them to reverse the situation they found themselves in.
MILLER
Yes but my feeling is that a lot of doctors think that the worse thing that can happen is that the patient dies and I don't think that's true.
EDMONDS
No I think you're absolutely right.
MILLER
I'm not frightened of death at all but I am frightened of the way I die and I would like to die in my own bed, I don't want to be in a hospital, I don't want to be attached to lots of tube helping me to breathe or feeding or a catheter or whatever. When the time comes that I can't live a full life I would like to retire to my bed and go.
MYERS
Maureen I'm sure we would all say aye to that. But just as a final point to Polly. Of course palliative care is not about keeping people going longer than they should, is it, it's not in that sense active medical treatment but it is about making sure that the quality of life towards the end is as comfortable as possible.
EDMONDS
Yes exactly, it's about trying to refocus and reprioritise on what's important for people and then trying to help them achieve that but not necessarily doing anything to prolong life.
MYERS
Maureen thank you for that. I'll go to an e-mail from Anne who's also concerned about her father who she says is in serious pain but he's refusing pain relief. And we're wondering - or she's wondering what your views are of that. Of course we've just been talking about respecting people's wishes but in this case she's obviously very distressed to see her dad suffering when he need not.
EDMONDS
Yes I think that nowadays for the majority of people we are very much better at controlling pain with a large variety of different pain relief drugs, of which morphine's the gold standard, but there are very many others that we use in different combinations in different people. I think the really critical thing here is to try and understand why Anne's father is refusing the pain relief, I mean he may be frightened about whether the drugs are going to shorten his life - which they will not if they're used appropriately - he may be frightened about the side effects of the drugs; he may be frightened about addiction, which again is not a problem if they're used appropriately. He may have other issues around pain control, I mean some people that I've seen in my career have very much wanted to feel the pain because they felt that that was a mark of what was happening to them and they didn't want us to try and take the pain away because then they wouldn't know in their body how things were going. And some people also have religious or cultural views around pain and the need to feel pain whether it's as a punishment or something like that. So I think it's really crucial to try and understand why he's refusing pain relief and ultimately it may well be that you can come to some agreement with the patient about things that he will and he won't do. If, however, he's making a fully informed choice not to have pain relief then unfortunately there's nothing we can do about that because we have to respect his wishes in that situation and it's very distressing as a healthcare professional and it's very distressing as a family member, I can understand that, because you feel paralysed because there are things that you can do but the patient isn't wanting them. But we have to respect patient's wishes ultimately.
MYERS
And if I can turn this right round and say I'm sure there will be people, perhaps like myself, who are thinking well if I'm in pain I will definitely want pain relief, I want all that's available, we can expect to have that and no questions asked and it won't make us high, if we're on opiates - morphine - and so on, we won't become addicted, there won't be serious side effects and our pain will be controlled?
EDMONDS
Nowadays there are very well established guidelines from the WHO - World Health Organisation - around managing chronic pain, which are very well established in clinical practice and are taught to undergraduate medical students and to nursing students and to other healthcare professionals. And pain relief is a very fundamental part of medical care. And so everybody has a right to effective pain relief. What's really critical is that that's done by people that know what they're doing so that the regimens to get optimal pain relief are done and individualised, so they're right for that patient, so that you're adequately getting the right drug, managing the side effects and keeping people pain free and well for as long as possible.
MYERS
Thank you for that, we'll go to another call now and we've got Catherine Byron, who's in Leicester, again I think wanting to talk about someone's wishes and making sure that they are understood and upheld. What's your story Catherine?
BYRON
Well my story is another father story. It's my father who died at the age of 88 in November 2005 and the anxiety that I have had during his final illness, which was only 18 days in hospital at the end of his life, and since then, looking forward to my own management. Is that he was a medical man, he had for some years had a living will document lodged with his general practitioner and with family members. And he was diagnosed with fairly advanced prostate cancer 18 months before he died and as soon as that happened he was constantly reminding his wonderful GP about the living will and he was scrupulous about gaining his consent before prescribing antibiotics for his intermittent bladder infections and things like that. And he continually told us he didn't want officiously to be kept alive. And the problem was that once he was admitted to hospital and had the diagnosis about four days later that in fact his prostate cancer had spread through his liver, from that point onwards the doctors did wanted officiously to keep him alive and they didn't believe me or his GP, they didn't accept his living will document when we brought it into them, they said oh the way it's worded is only valid if somebody's in a coma or has Alzheimer's. And it was extraordinarily difficult to get them to listen to him and to get him to express his wishes.
MYERS
Well I'm shaking my head in disbelief and I think Polly is too. But it was so clear and explicit as to what he wanted and what he didn't want to happen and this was overridden. Polly can you understand that as another health professional yourself?
EDMONDS
Well it's difficult not knowing exact details clearly but this sounds like a very unfortunate situation. I mean the current state is that medical people should respect an appropriate living will. We have case law for that, so we should respect a living will, so long as it's appropriate to the given situation and I guess the difficulty here might have been that the living will may be was quite general and the doctors felt that it therefore wasn't completely appropriate to the situation that they found themselves in. Having said that, I mean good practice would be that you should consult with patients and with families as to what their wishes are and not impose medical treatment against a patient's wishes. And I think it's really disappointing in this situation that perhaps the family didn't listen to you and the GP more to understand that active treatment in your father's situation would not have been what he wanted and wasn't what he wanted.
MYERS
And may I follow that up by just asking: are you suggesting, this story notwithstanding, that we should all be making a living will and if so do we make it now?
EDMONDS
Well I think that's a very difficult one because for living wills to be valid they have to be applicable to the situation you find yourself in, so for you or I to sit and make a living will now would mean that it would be very, very general and might not be applicable. But I think if people are faced with a life threatening illness and do have specific views on how they would want their care to be delivered then I think that yes that is something they should discuss with their GP or the palliative care team or other healthcare professionals. And it would be appropriate and we would encourage people to really express what their wishes and their choices are, so that we're informed as healthcare practitioners who can help plan their care in partnership.
MYERS
Thank you and thank you for the call Catherine. Let's go to Charmaine Paul who's in North Wales, who's got some ideas about how we might make our plans and carry them through properly with help. What's your plan Charmaine?
PAUL
Right, yes hello. My husband died at home about a month ago and I felt that I needed - now I've realised that I needed training and advice and support in how to help him as he came to the last few days out of his life. And I feel now that dying is as important as being born and that we should have some techniques in place. And I thought what about doula - you know we have doulas around for mums who are going to have their babies but I think we desperately need the same sort of thing for people who are facing bereavement.
MYERS
Now by doula you mean like a birth attendant or in this case a death attendant?
PAUL
I think so or somebody to be around who's going to be able to provide you with the sort of information that you need in order to make that sort of experience for your - the person who's dying - as comfortable and - well I suppose - pleasant. For example I didn't realise that when a person is close to dying they become very, very agitated and my husband did and I spent all day worrying and not really knowing what the matter was. Now if I'd have known or had somebody had said look these are the sorts of things that are going to happen and you need to be aware of it then I could have known what was going to happen and been a bit more prepared. Similarly with - you know when somebody's dying apparently they can still hear what's going on, even though they might not be able to communicate or their eyes might not be open. And I only discovered that just by accident when I was reading a book and it was just fortunate that I remembered that and was able to talk to him.
MYERS
Now let's see if Polly's got a thought on this because I suppose in a way there may not be a doula as such but that is the role, is it not, of a good nurse or someone within the hospice or if it is someone at home perhaps your own GP would be there to help with those final few hours?
EDMONDS
Yes, no absolutely, I mean I think that what you're describing is what we would anticipate a palliative care team - or the role of a palliative care team or palliative care nurse in the community might fulfil. It doesn't necessarily have to be somebody from palliative care, it may be a community matron or district nurse or, as you say, the GP. But certainly I mean it's obviously disappointing that in this day and age that you sound like you were left so isolated and so uninformed when looking after your husband. I mean certainly for cancer patients there's very much a model nowadays of people having a key worker through the course of their illness who would, in a sense, be able to keep both patients and families informed and updated and help coordinate their care and that may be something that goes on into - involves the palliative care stage as well and might fulfil many of the functions that you're talking about and that would often then be a palliative care nurse.
PAUL
I think what seemed to go awry maybe was that we didn't want to be in hospital and we didn't want to be in a hospice.
MYERS
Well look if I can - sorry to cut you off there - but if I may I'd like to bring in our next caller Pamela Power who rather like you did indeed take care of her husband, I believe, at home and things worked out quite well or very well for you and tell us just what happened and how you coped with it and whether there's something here that might help other people to know about Pamela.
POWER
Well we knew for about nine months before my husband died that there was no other medical care that he could have and the whole tranche of help swung into place. Starting off with my GP and the district nurses attached to the surgery who were incredibly supportive throughout. And the district nurses were in direct relations with Macmillan nurses, the hospice Marie Curie, who all supported us and were able to supply nurses to give me a break sometimes, most particularly towards the end. And my husband had to go into the local hospice for a couple of weeks, not long before he died, but we were able to get him home, which is what he wanted, he wanted to die at home. And we converted the dining room to a bedroom, we were supplied with all the equipment that one could possibly want, people came in everyday to wash him, the district nurse came in twice a day, the GP came in most days. I couldn't have asked for more help and support and I will be forever grateful to them for that.
MYERS
And thank you for telling us that, that's really very reassuring to hear that things can work extremely well and it touches though on the next e-mail I have, which is from Brenda, in her case it's her mum who's suffering from Alzheimer's. Now Pamela you were talking about your husband with cancer and it seems there is some difference here about what care is available for cancer patients as opposed to other terminally ill. And Brenda's concern is whether she will be able to move mum home for her to die and what she can expect in terms of practical help from the services. So if I can put that to you Polly, what's on offer in this case for a mother with Alzheimer's?
EDMONDS
Yes I mean I think that the last few callers have highlighted a series of issues, haven't they, I mean there clearly are regional variations in terms of what's on offer, in terms of community services and the really crucial thing is to try and identify what's available for you locally. But certainly in Brenda's case, in trying to explore getting her mother home, she needs to have a discussion with social services about what sort of package of care they can put in, but there are often local charities as well that can also supplement statutory care - so things like - charities like Crossroads or Age Concern can often provide a lot of care on top of the statutory. And also she would need to explore the social services options around, for example, respite - similar to how Pamela mentioned her husband went into the hospice for a couple of weeks, there may be opportunities for respite in a local care home for example.
MYERS
I'm very conscious of time running out. I'd like to take a last call from Sylvia who wants to tell us about her daughter who died. Sylvia what helped in those very distressing circumstances - your daughter was in her 30s I think?
SYLVIA
Yes she was in her 30s with a husband and two small children, this is last year about 10 months ago. And we were very much led by what she wanted to do and accepted the fact that she was going to die and I think accepting that right near the beginning, when we were told, which was 10 months really before she died, we accepted the fact - or at least I did - and I think that has helped me now.
MYERS
And you were able to make plans, including for the funeral and the coffin?
SYLVIA
Yes, yes, she very much made all the plans for her funeral and what she wanted to happen straight after - she wanted to stay at home - and my husband and I were a bit frightened and said we don't know whether we can do this. But we were led by her husband and her and we did that and it was the most beautiful wonderful thing and I would never have liked her now to have gone away in a car or anything, we looked after her and she had her own willow coffin that had been made specially.
MYERS
Sylvia thank you for that. And thank you Polly Edmonds, our expert today, thank you for all your questions. There is more information - you can call our free and confidential helpline 0800 044 044. You can listen to this programme again on our website bbc.co.uk/radio4. And join me again next week, if you will, when we'll be answering your questions about hip replacements.
Ends
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