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TX: 26.08.04 - COMMONS REPORT SAYS THAT TERMINALLY ILL PEOPLE SHOULD HAVE MORE CHOICE OVER WHERE THEY DIE

PRESENTER: JOHN WAITE
WAITE
Now it may be a subject that we don't like to dwell on but we're all going to die and though we have no choice about that we should have a choice, if at all possible, about where we die. That's the conclusion of the House of Commons Select Committee on Health, which, in its report this year into palliative care, says that of the half a million people a year who die in England most terminally ill patients would like to die at home. However, all too few manage to realise that last request - only 20% of people currently die at home whilst almost three times that number die in hospital.

Well in response to the committee's findings the Marie Curie Cancer Charity has called on the Government to provide an extra £100 million a year to be spent on more support care for patients who want to die at home and if that money was found, the charity says, not only would it benefit those individuals but it could save the NHS £200 million a year. The select committee's also recommending that there should be six weeks paid leave for carers looking after terminally ill patients at home.
 
Well Baroness Ilora Finlay is Professor of Palliative Care at the University of Wales. Palliative care then, Baroness, and choice for terminally ill patients on the agenda at the moment but what is the situation like at the moment for people with a terminal illness?
 
FINLAY
The problem for people with a terminal illness, if they're in hospital, is that the process of being discharged from hospital is still delayed. There has been the Delayed Discharges Bill but unfortunately hospice services don't have access into that and that's partly because they're mostly provided in the voluntary sector. Then healthcare and social care are coming out of different budgets, so they tend to not be linked. The other problem is that there's a lot of education needed out there in primary care. At Cardiff University we've been running a course for many years now educating GPs. A lot of people have come on the course already but Marie Curie has been working with us to increase the amount of education out there in the community, so the professionals who deal with people know what they're doing and feel confident. And then there is a need for support for the patients themselves and for their relatives.
 
WAITE
And do ordinary people, actual people, know what options are open to them?
 
FINLAY
I think people don't know enough as to what the options are, they're not really aware that they should be asking and saying - I want to go home, I don't want to live my last days or weeks in hospital, I want to live them at home. This is about living until the moment you die. There's no point living your last weeks, months, in hospital and then going home for the last day or two to actually die at home - people want to spend as much time as they can in their own homes, even when they are very, very ill.
 
WAITE
And that's what they want to do but most people, do you believe, think that somehow because they're so ill they must die in hospital - and that's not the case?
 
FINLAY
I think there is a fear out there in the population as if there's something special that has to be done or whatever but with professional support very quickly families and carers realise that no they don't need anything more, they can learn very quickly the skills that they need with support and they can be there and help somebody right through the stages of their terminal illness.
 
WAITE
And can the NHS really save money if more people were to be allowed to be able to die at home?
 
FINLAY
The issue of saving money is complex. You don't actually save money overall, what you do is you free up a huge amount of resources - for every pound spent on community care, it's been estimated that you'd free up £2 of specialist care which means that specialist beds can get on with treating people who are currently waiting to go in for procedures or who are in an inappropriate ward waiting to be transferred, perhaps to a surgical ward, to a medical ward, and so on. So you free up resources, it becomes a very cost effective way of spending the money you've got.
 
WAITE
Cost effective and of course improves things for patients.
 
FINLAY
Dramatically, it is about improving the quality of the last days and weeks and even last hours of those people and their families, and their families and their carers live with the memory for the rest of their lives.
 
WAITE
Okay, well for the moment Baroness Finlay thank you very much indeed because I want to turn now to a couple who've been going through this very delicate situation. Jeremy White and his wife Diana. Jeremy was diagnosed with lung cancer last year and he's currently living at home and managing his pain with the help of a specialist palliative nurse Hanni David [phon.] and his local hospice in the Weald of Kent near Tunbridge Wells. Jeremy's lung cancer means that his voice box has been depressed, so when you hear him he can now only speak in a whisper. But Angela Robson has been along to the Whites' home to visit them.
 
DIANA WHITE
Jeremy sits most of the day in his favourite chair looking out on his garden, which he has lovingly tended for the last 18 years.
 
ACTUALITY
Is your mouth still sore?
 
It's getting better.
 
DAVID
I've been visiting Jeremy and Diana at home since September of last year when he was referred by the oncologists and my role currently is providing specialist palliative care and recommending any medication that would help improve his symptoms.
 
ACTUALITY
How are you getting on since you've been home?
 
A lot better thank you.
 
ROBSON
Jeremy, why did you choose to have this care at home, why did you decide to stay at home rather than going into a hospice?
 
JEREMY WHITE
Because I was fortunate enough to be healthy enough to remain at home and with the support of having hospice care visiting at home it meant I could stay at home instead of going into somewhere permanently. I can manage at home with short periods in the hospice, just to get sorted out. And then visits from people like Hanni and a counsellor coming here, it allows me to stay at home. They give advice, they're coming to your house, instead of you having to go out, which is very stressful and very tiring to do.
 
ACTUALITY
How are you getting on with the nightmares are they still troubling you?
 
DIANA WHITE
For Jeremy his care up to about February this year was extremely fragmented. We got to a point in a ward at a hospital here in Kent where we were being passed from pillar to post. We were admitted at Accident and Emergency because he had blood in the urine, doctors didn't know who he was, they didn't know his history, he was not a cancer patient he was a patient with blood in his urine. And obviously he was treated for that. And he was being obviously treated not as a person, as a cancer patient, as a terminally ill cancer patient, but just as somebody that had to be treated for that condition and then discharged.
 
ROBSON
Why has it been important for you as a family to have this care at home?
 
DIANA WHITE
Well first of all I don't think there was a choice. The care at home is necessary because we are very aware that the hospice is a charity, it is a charity that is there for the support and the help of people when they are truly in need and Hanni, together with her team, assess when their patients are truly in need to go and benefit from this charity.
 
JEREMY WHITE
Well it's a very important thing with hospice is you do have 24 hour contact with the hospice, anything that goes wrong at 2 o'clock in the morning - I don't feel well, don't know what to do, don't know what pills take, Diane can ring the hospice and get their professional advice of what pill to take and that for us, again, has been marvellous.
 
DIANA WHITE
Without the hospice you would ring at 2 or 3 in the morning, the surgery is closed, you get whoever is on call who doesn't know Jeremy. He would not know why Jeremy's taking one particular pill against another and in a situation where Jeremy might be very distressed he may give another tablet which may exacerbate the condition. Without the hospice his care today would be even more fragmented, even more unstable. But today we can ring the hospice at any time, we now know all the girls in the ward, they all now know Jeremy, they know exactly not only what Jeremy's taking medically but they know the type of person Jeremy is, they know that Jeremy is particularly anxious, they know him as a human being. And to be able sometimes to talk at 3 in the morning with somebody that knows my husband and for me to have that support is invaluable.
 
ROBSON
Do you think it's important that people can choose to have this care at home?
 
HANNI DAVID
I think it is definitely yes, it gives people better options and it's not always in people's best interests to be in hospitals or hospices, so it's important that life can continue and they can continue to experience the pleasures of being at home and being part of family life.
 
DIANA WHITE
When death comes, which as it has to come for all of us, I will treasure the memory of the time shared with my husband. For me the opportunity that the hospice has given us as a married couple has been to not be afraid of death and this transition period but to make the most of it.
 
WAITE
Diana White. Well Dr Teresa Tate is the medical advisor for Marie Curie Cancer Care and the consultant in palliative medicine for Bart's and the London NHS Trust. What, in your view Teresa, are the biggest issues facing patients and families at this time?
 
TATE
I think probably the most overwhelming one is the wish to continue to live with the family and to experience, as was said, a life until one actually dies. And the most obvious place to be able to do that is in the home. The problem that we identified with the survey that Marie Curie Cancer Care undertook was that many people, whilst saying that that's what they'd want to do, feel that they don't have the equipment to be able to manage that and they don't know how to turn to - places for advice - they don't know whether they'll be able to manage it. And so they become very anxious and the family, together with the patient, may decide that the safest place would be for somebody to stay in the hospital.
 
WAITE
So they don't believe the support is there that will help them through?
 
TATE
They don't know that the support is there. Once they are able to find the support, as was shown in this case I think, they find that the support is exactly what they wanted and does allow them to achieve what they want.
 
WAITE
But before they found that, we heard Jeremy White's experience was of dealing with lots of different doctors who knew little if anything about him - is that something that's all too common?
 
TATE
Unfortunately I think it probably is. People go into a large hospital and they may be cared for by different shifts of doctors and nurses, who will do the best that they can in the circumstances but that's not the same as being able to provide the continuity of care that can be done by the hospice which can focus on a much smaller number of people.
 
WAITE
Well Baroness Finlay you were saying earlier that the social care and the healthcare funding is separate, do you think these things ought to be joined up in some way, would that help?
 
FINLAY
I think it would help, I think it's very difficult when somebody is very ill to actually separate out their health needs specifically from their social needs, they're all intertwined. And for families they can find that they're being assessed by lots of different people and they don't really understand what's happening. What they need is to have the person they love at home and know where to go for help when they need it. And as was so clearly stated that's often out of hours - that's in the night, bank holidays, Saturdays, Sundays - those are the times when the crisis occur, not 9 to 5 Monday to Friday.
 
WAITE
Well, as I say, another proposal from the Commons Health Select Committee is to introduce paid leave for carers of terminally ill patients and Madeleine Starr joins us now, she's the carers and employment project manager at the charity Carers UK. How would this paid leave work Madeleine?
 
STARR
Well I think what the health select committee are looking at new Canadian legislation which has given carers of people with terminal illness a right to six weeks paid leave. They have two weeks leave initially before the paid leave kicks in and I think the suggestion is that that's paid by an employer. And at that point they claim an employment insurance which is paid by the state and they're then able to be at home for up to six weeks and then return to their own employment within eight weeks. If we were looking at a similar system in this country we'd have to have - we'd certainly have to look at the Canadian model and be very, very clear about how it worked and we'd have to be very, very clear within our own system who paid for it.
 
WAITE
But do you think, I mean just on the theory of it, that it would mean more people would be able to die at home?
 
STARR
I don't think it's the whole picture, I think it's a part of the picture. Certainly where families are involved in this very, very sensitive area and very traumatic area of care sometimes being able to know that your employment is secure, you have that period, would be a very good thing. When you take it, how it benefits you across a longer period that's another issue. It isn't necessarily about enabling someone to die at home - how can you predict that? It's about supporting care within that period. Good practice employers, on the whole, will respond very sensitively to the needs of people providing palliative care and a lot of them do offer a mixture of paid leave - either compassionate leave or special leave - unpaid leave, perhaps annual leave matched by unpaid leave. And what we should remember is that we're looking at statutory funding, a carer who isn't working is providing up to - more than 35 hours a week of care can claim carers' allowance. Now this is not a benefit which pays an awful lot of money, currently £44.35 and I think a lot of our push - campaigning push - should be around raising the level of carers' allowance but it does exist. So that combination of perhaps paid leave, a period of paid leave from an employer, unpaid leave in which carers' allowance could kick in, could in some way replicate the Canadian model.
 
WAITE
Okay, but beyond that part of the picture that Madeleine was talking about, Professor Finlay, I mean what do you think should be done to give more people more choice?
 
FINLAY
I think the real problem at the moment is that people just don't know that they can ask to go home and there is not enough support out there in the community and I fear that looking to the future, out of hours care is going to become more fragmented in primary care than it has previously, so more of a burden for out of hours care is going to fall on the charities such as Marie Curie Cancer Care and the Government are going to have to grasp the nettle and ensure that they really do adequately reimburse those charities for the fundamental care that they're giving, without which the patients could not be cared for at home.
 
WAITE
Dr Tate?
 
TATE
Yes, I think there are some things in addition to that which can be done to improve the situation for people - education of their usual healthcare providers to ensure that they know what services are available and we are already putting into place programmes to help educate GPs and district nurses, to help them manage the whole course of somebody who has a terminal illness, so not just about their dying process but all the time that they may be at home. And to encourage and support their carers, specifically as well as in this more general way that's been discussed.
 
WAITE
And final word to you Madeleine.
 
STARR
I think the focus has to be on coordinating services and ensuring that both the person who has the illness and the family and carers know where to go to for information and are confident, really confident, that they will have the support they need when they need it. And that involves a lot of players, all of whom need to be trained, educated in how you support what is after all a fairly natural process.
 
WAITE
An inevitable one. Madeleine Starr and Dr Teresa Tate and Baroness Finlay thank you all very much indeed.

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