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INSIDE THE ETHICS COMMITTEE

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Programme 2 – Care for the Elderly

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RADIO 4

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TX DATE:ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý WEDNESDAY 13TH AUGUST 2008Ìý 2000-2045ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý

PRESENTER:ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý VIVIENNE PARRY

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CONTRIBUTORS:ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý JULIAN HUGHES

ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýTONY HOLLAND

ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýDEBORAH BOWMAN

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PRODUCER:ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý PAM RUTHERFORDÌýÌýÌýÌýÌýÌýÌýÌýÌý

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NOT CHECKED AS BROADCAST

PARRY

Today on Inside the Ethics Committee, what happens when an elderly man refuses all the medical and social care offered to him and insists his family do the caring - even though they live hundreds of miles away?

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Today's real life case is a potent - and for many - a familiar mix of ethical dilemmas.Ìý If a person's mind begins to fail, at what point, if any, should their express wishes be disregarded in their own best interests? Should the needs of their family be considered or are those of the patient always paramount?Ìý And there are also the broader ethical issues about the way that elderly people are cared for by the NHS and, that thorniest one of all - a finite resource and an infinite need.

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All the cases on Inside the Ethics Committee are real life cases.Ìý Today's is about an elderly widower, Mr Morris.Ìý So let's first hear the testimony of the medical professionals involved.Ìý

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The doctor at his local community hospital.

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DOCTOR

Mr Morris was an 86-year-old man, he'd previously been admitted to the acute general hospital after a fall and been treated for heart failure.Ìý He was then found to be very poorly mobile and unable to go home, so he was transferred to our care for rehabilitation.Ìý I see him for the first time when I do my ward round a couple of days after he's been admitted.Ìý I go into see him and I find an elderly man quite thin, lying on his bed, back turned, facing the wall and essentially refusing to communicate with me at all.Ìý The nursing staff and the physiotherapist give me some background at this point and they say that since he's arrived with them he has been quite hostile, very withdrawn, he has been refusing help with washing and cleaning and toileting, although he quite clearly needs that help and at times he's got quite cross and even been hitting out at the nursing staff.

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PARRY

The next step in his care was to assess how much he could do for himself.Ìý The occupational therapist takes up the story.

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OCCUPATIONAL THERAPIST

Physically he, at the time I saw him the first time, he needed a little bit of help to stand up, and was able to walk just one or two steps with somebody either side using a frame.Ìý Washing and dressing wise he did participate in the process - upper body, wash his face, washed his arms - and otherwise needed help with all his lower body.Ìý And he was with us for a few weeks and over that period he did sort of make some improvement but not we thought good enough to go home quite because he wasn't able to toilet himself on the ward, he wasn't able to manage that side of things, which is always difficult when you're living on your own.

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PARRY

And his physical condition wasn't being helped by a problem that he'd ignored for far too long.

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DOCTOR

The physiotherapist had noted that he really couldn't put any weight on his feet because they were quite swollen and he was clearly in a lot of pain from very nasty leg ulcers that looked as if they hadn't had any significant treatment for a long time and had refused to see the district nurses - they had been in once, perhaps about a year before, but he had refused to have them back and he would try and dress the leg ulcers himself as best he could but he wouldn't let anyone else touch them.

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PARRY

The team looking after him needed to arrange the best possible care for him but to do that they needed to have a more accurate picture of Mr Morris's medical history.Ìý So they asked his GP and his family for more information.ÌýÌý

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DOCTOR

We spoke to his GP who basically said I haven't seen him for about 10 years.Ìý The GP knew of him because he remembered that there had been limited contact when Mr Morris's wife was very ill but the GP did remember that Mr Morris had really refused all help in looking after his wife and that he had looked after her at home with help from his family until she died.Ìý We then spoke to Mr Morris's daughter and son-in-law, who'd come to visit from about a hundred miles away, they were very concerned and they said that he had been having difficulty in managing at home for some months.Ìý They reported that Mr Morris didn't want any outside help but that he did expect his daughter to visit regularly and to help whenever necessary.Ìý It was clear that unfortunately Mr Morris had been incontinent at home, in his bed and other places in the house.Ìý She had been doing his washing for some time and incontinence was a frequent problem.Ìý She was also concerned that he wasn't eating because they found remains of food in the fridge that had quite clearly been there for some time.Ìý And they also felt that he was at risk of falls at home and in fact they'd been called several times because he had fallen at home.Ìý The family were obviously very concerned about all these issues and felt that he really could not manage at home and that he would not manage at home and that somehow we had to find a way of caring for him.

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PARRY

Mr Morris is clearly in need of both medical and social care but is refusing to accept it from professionals. He is insisting that he could go home but expects his daughter to do everything he needs for his care - a very heavy burden, especially for someone who lives hundreds of miles away.

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But discharging him isn't simply about whether he is physically well enough - his mental state also needs to be assessed. Mr Morris's doctor again.

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DOCTOR

Over time he started to communicate more with the nursing staff and with the occupational therapist and they were able to assess his cognition and felt that he was at times confused.Ìý They also felt that he might be depressed and our difficulty then was to decide whether or not his cognitive impairment was due to depression or whether there was also an element of dementia.Ìý So at that point what we did was we asked for some advice from the psychiatrists.Ìý They assessed him and felt that he had moderate dementia although they weren't quite clear about the type of dementia.Ìý They did also suggest there might be an element of depression but they didn't feel that the depression was so severe that it was actually responsible for the problems with his cognition.Ìý The issue was whether or not there was a reversible cause for his poor cognition, in which case we should delay any decisions until he was in a better position to make a decision for himself or whether there was a non-reversible cause for his cognitive impairment in which case now was the right time to make a decision about discharge.Ìý And after very careful assessment we decided that because he was unable to comprehend the risks or to take that information on board and process it that he was unable to make a decision about discharge and that he didn't have capacity to make that decision about discharge.

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PARRY

WellÌý at this point,Ìý let me introduce today's panel - with me are Dr Julian Hughes a consultant in old age psychiatry at Northumbria Healthcare NHS Trust and a member of their clinical ethics committee.Ìý Deborah Bowman, who's a senior lecturer in medical ethics and law at St George's, University of London and Professor Tony Holland, a psychiatrist from Cambridge University who has specialist knowledge of the Mental Capacity Act - an important feature of today's discussion.

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And you too will have an opportunity to give us your thoughts by telephone or on the programme's website and I'll be giving you those details later.

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Now Deborah, almost everyone listening will be familiar with a case like this - what for you are the main ethical issues here?

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BOWMAN

I think there are three principle issues.Ìý The first is about capacity, particularly in situations like this where capacity may come and go and also capacity to make what sorts of decisions.Ìý The second relates to that - if you find somebody doesn't have capacity how do you judge that person's best interests, who does the judging, how do they do it and to what end - whom do they involve?Ìý And finally some of the broader issues about this vulnerable population and the ways in which older people are treated in the health system.

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PARRY

Well before we get to the question of Mr Morris's capacity, Julian Hughes, I imagine these kinds of problems are very common and do you see them often in clinical ethics committees?

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HUGHES

We do seem them in clinical ethics committees sometimes but I think much more striking is the number of times we see them in clinical practice because I think almost every week there are cases like this appearing on the medical wards.

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PARRY

Tony, what do we mean by capacity, what's the definition of it?

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HOLLAND

Well capacity really is a legal concept but essentially it's about someone's ability to make decisions - decisions that we would all take in our lives, a decision whether to accept medical treatment, decisions or not about where to live.Ìý And the Mental Capacity Act sets out the definition of what we mean by capacity.Ìý And it really requires that the person is able to understand the relevant information that you need to understand to make that decision and whether you can weigh up that information and balance it and arrive at a decision and communicate that decision.Ìý And in this case it sounds as if the person lacks the capacity to make the relevant decision here and that is where he should live and whether or not to accept treatment.

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PARRY

But it's about a specific decision, it's not about capacity overall?

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HOLLAND

That's absolutely right and one has to be careful not to talk about a person lacking capacity, the only person that one can say that with certainty about is someone who's unconscious.Ìý But in this case you're talking about someone's ability to make this particular decision at this particular point in time, so it's seen as decision specific and time specific.

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PARRY

And how do you test that - we heard that the psychiatrist had been involved?

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HOLLAND

Right, it's really a judgement that has to be made and it's made on the basis of really talking to the person and putting to them the issues that the person needs to understand and needs to be able to balance and weigh up in arriving at a decision.Ìý So if it's about medical treatment or if it's about where you should live you really need to explain to them the pros and cons of various options.Ìý And then you ask them to explain that back to you and you make a judgement about really whether they are able to understand what you've said to them and are able to explain it back to you.Ìý So then I think when you have a situation where someone is making decisions or appears to be making decisions that perhaps most of us found somewhat unusual and odd one explanation of that among others might be that he lacks capacity, that he doesn't understand and therefore his decisions are nonsensical decisions, if you like, because he doesn't appreciate the issues.

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PARRY

But he could be just eccentric.

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HOLLAND

He could be eccentric or he may be frightened about moving from his home.Ìý So the task of the clinical team here is to try and understand why it is that he's making these decisions.

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BOWMAN

And I think, picking up on that, that's a really important point that actually simply refusing to engage, so not communicating, that doesn't mean you don't have capacity.Ìý Clinicians have a responsibility to maximise capacity by doing all they can to forge a relationship.Ìý And the other point, I think the point that Tony just made about being scared, is terribly important.Ìý Being taken to hospital is frightening, being put in an alien environment is frightening, it may not be surprising that further care or formalised involvement appears a very, very unwelcome thing to do for this man at this time.

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PARRY

Julian, presumably you have to deal with this sort of thing day-in, day-out, the Mental Capacity Act gives you these guidelines but how do they work in practice?

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HUGHES

Well I think the key thing is actually what Tony said which is about judgement because one of the things that the Mental Capacity Act seems to do is it does - and it does do - is that it gives you a framework in order to approach these difficult decisions.Ìý But I think what it doesn't do is it doesn't always provide the answer and I think the particular area to look at is the area of weighing up because we all weigh things up differently and even when presented with exactly the same facts we might come to slightly different conclusions.Ìý And it's not really the conclusion that the person comes to, it's really the way they've weighed things up.Ìý But I think even in that regard people weigh things up against different sorts of values and it might be that especially in this - the particular thing we're talking about today, which is thinking about going home, it might be that people have quite a variety of values which they bring in when they're doing this business of weighing up.Ìý An example of this is that I once remember talking to somebody about this - about this very issue and the person clearly didn't understand, couldn't recall very basic information about where they lived, about why they'd come into hospital, about various risks and the things that have caused them problems but when I said why do you want to go home, they said, quite simply, because I've lived there for over 40 years, that's where I was married, that's where I had my children and brought them up and it's quite hard then to say is that a sensible weighing up of facts or not because it isn't just a weighing up of facts, it's also a weighing up of things like emotional resonances ...

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PARRY

Security and that's where you feel familiar and comfortable.

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HUGHES

Exactly yeah.

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BOWMAN

And I think it's striking that this is somebody whose values have encompassed a slight resistance, well an obvious resistance, to healthcare and to involving themselves with healthcare professionals to date, so that is part of his weighing up process.

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PARRY

I mean I wept for Mr Morris, I mean I felt so sorry for him, I mean that his ulcers were untreated and he was trying to do them for himself, I mean it was just awful to hear.Ìý But actually refusing help for something like that it isn't in itself an indicator of lack of capacity.

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BOWMAN

No if you're capacit0us you can make extremely bizarre decisions.Ìý Once capacity comes into question those bizarre decisions may then inform the assessment of capacity, it's a very interesting elision.

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PARRY

Capacitous - now there's a phrase for you.Ìý But is capacity then not a question of yes or no, it's really a variation?

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HOLLAND

I think one does have to see it as a judgement, excepting that we're talking about human behaviour and the fact that human beings are really very different in the way that Julian has just described.Ìý But I would just like, just for a moment, takes us to the issue of the sort of context of someone's life too because I think that's important and I think here the information we have is that actually he's never really liked doctors very much or hospitals and that's ...

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PARRY

Can't say I blame him.

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HOLLAND

Well that might be so but I mean that's rather different than if you had someone who previously had engaged in health treatment when he needed it and now is refusing because it begs the question why now is he refusing because I think one of the important things here is to say how do we make sense of this person's refusal, is it, for example, that he has developed depression and he now doesn't feel he's worth the help that is being offered him, which is the way some people might feel with depression or is it that he's very confused or is it well he's never liked doctors?Ìý So the context is very important in terms of informing this judgement.Ìý The judgement, of course, is about the here and now.

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BOWMAN

I mean Tony says something very interesting about making sense of the refusal but I think it's also just making sense of the person as well.Ìý Specifically the refusal but who is this man and that's a jigsaw that as Julian said involves lots of different people.Ìý And multiple reviews - it isn't a once only process, assessing capacity, at all.

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PARRY

Now let's go back to the case.Ìý Having assessed him the team looking after Mr Morris have decided that he is not able to make an important decision about his care.Ìý What happens next?

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DOCTOR

In that situation the medical team are tasked with making a decision in the patient's best interest.Ìý The best interest decision means taking account of the patient's expressed wishes - so in Mr Morris's case although he didn't have capacity he was expressing a clear wish to return home.Ìý A best interest decision also involves taking account of a patient's previously expressed wishes and Mr Morris's clear previous expressed wishes were that he wished to remain at home until he died.Ìý And his daughter and son-in-law did agree that that's what he'd always said - that he would never want to be put in a care home.

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PARRY

So the team now needs to find out whether Mr Morris could still live at home.Ìý To get a better idea, the occupational therapist went with him to his house.Ìý The team then worked out how much care he would need in order to fulfil his wish.

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OCCUPATIONAL THERAPIST

We all thought at that stage it may fail on the home visit.Ìý But in fact the opposite happened.Ìý When I did take him home, we take people for about an hour just to sort of test the water, and his walking on the home visit was much better than it had been in the ward situation, whether he was more comfortable in his own surroundings I'm not sure but he certainly put a spurt on and his motivation after the visit was quite high to return home. ÌýSo the discharge plan then changed to going home but we were aware it was a bit of a trial because it had certain areas of risk to it.

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PARRY

But not everyone was happy with the plan to try and discharge him home.

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DOCTOR

Mr Morris's family were very upset that we would even consider returning him home when it was clear that he was at risk of harm if he returned home.Ìý And they didn't understand why if the patient had dementia we should give them any say in the decision-making process.Ìý So what I had to do was explain to them the decision-making process that we had to use and also to talk through with them not only talking about their anxieties and concerns but also to try and get more background information about Mr Morris.Ìý One of the things that they told me was that he was a practising Christian and had very strong religious beliefs which also involved the rejection of medical care and the belief that when your time came, your time came and there was nothing that you could do about it.Ìý The daughter was very upset and tearful during the consultation and she explained how much pressure Mr Morris put on her and had done for a number of years as his daughter he did expect quite a lot from her, I mean he would expect that every time he phoned and asked for help that she would drop everything and drive the hundred miles to come and see him and help him.Ìý The son-in-law just said look this situation is unacceptable, I can't allow my wife to be put under this kind of pressure and stress, you have to stop this happening.

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PARRY

Well it's an impossible situation and I suspect a lot of people will be very, very familiar with it.Ìý Let's talk about best interests.Ìý Deborah, how do we work out what Mr Morris's best interests are?

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BOWMAN

Well I think it, first of all, depends who the we is in that sentence or we are in that sentence.Ìý But I think the first thing to say it's not just best medical interest.Ìý The second thing to say is that it may well be that there are now competing interests here, that we can make more or less contingent upon the patient's best interest. So, for example, his daughter and his extended family - how much we weigh their interests and their availability actually.Ìý If going home means that Mr Morris will need the involvement - the continued involvement - of his family it may not be a sustainable way of interpreting his best interests.Ìý However, there may be other options.Ìý At the moment we have something of an impasse, understandably, but it may be that there other ways in which Mr Morris can be supported without the burden falling on the family.Ìý I don't think you can discount the family but neither do I think that one should necessarily take their word, their narrative, as complete because the alternative is going to be for a man who wants to be at home who doesn't like healthcare to go into an institution.

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PARRY

Julian.

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HUGHES

The thought I was having as Deborah was saying that was that I suppose one of the importance - part of the importance of programmes like this is that they emphasise ethics and the trouble for clinicians is that ethics doesn't always make things easier, it will sometimes make things much more difficult.Ìý So I think one of the things that the Mental Capacity Act does and thinking ethically about it is that it means that conversations have to go on in more depth and things need to be thought about longer and harder, which isn't easy in busy clinical environments.

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BOWMAN

Absolutely, and I think doing an ethical thing doesn't always feel good.Ìý There is something interesting about that that doing the ethical thing won't necessarily leave everybody happy and that can be very difficult to live with as well.

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HOLLAND

I think we talked earlier about - with capacity assessment - that that was a process and I think the same is true of best interest assessments.Ìý Where you have time, I mean there may be circumstances where someone has to make an urgent decision in someone's best interest, but there is time here and although there may be pressure in terms of beds and so on there is a process and I think what this situation has really nicely illustrated is that you need to test things out.Ìý And like - I agree entirely with what Julian said - that the OT taking the person home here was really very important because what it did is help to reassure the medical team that perhaps the risks that they thought might be present were perhaps not as great when you saw the person at home then you anticipated that they might be.

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PARRY

Leaving aside the family for the moment, how do we work out what are in Mr Morris's best interests, I mean just thinking about him, not thinking about his family, not thinking about the level of resources, what's in his best interest?

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HOLLAND

Well I mean you raise an important issue that of course the Mental Capacity Act is about the best interests of the person who lacks capacity, it isn't of course strictly about the best interests of his or her relatives, although of course that all comes into the equation.Ìý But the Mental Capacity Act does set out the process which is about considering the person's past wishes, their values - in this case his religious beliefs - but is also consulting with other - other people as well as considering the medical issues.Ìý So in a way a judgement has to be made about what weight to place on each of those different components and then arrive at a decision through that process really.

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PARRY

Deborah, you were talking about not relying on sometimes the family's narrative of events.Ìý But in effect you are having to do that in order to get an idea of the person as a whole.

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BOWMAN

I absolutely think the family's narrative should be incorporated, I think relying on it solely and exclusively, making it determinative, is not the right thing to do.Ìý And we are getting a sense of this man, I mean we talked earlier about getting to know the person and we do now know some things about him that are significant, not least of which that he improved when he was in his home environment.Ìý And the idea of risk is understandable but to focus only on risk, we all take risks everyday and we're allowed to and I think to focus entirely on risk and to expect clinicians to eliminate risk entirely perhaps is to misstate or overstate the normal balance between risks and benefits in healthcare.

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PARRY

Julian, does having dementia impact on ideas of who one is as a person?

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HUGHES

Well it does and there's quite a big philosophical literature about this.Ìý And one extreme view but actually quite popular view is that being a person or personal identity requires you to have intact memories and so I can say that I'm the same person today as I was yesterday because I can remember what I was doing yesterday but of course if you say that then you completely strike at people with dementia who are losing their memory.Ìý Therefore, lots of people would push to have much broader notions of what it is to be a person which would include other things like people's emotions, people's spiritual values, would just recognise the ways in which people are situated in all sorts of other contexts.Ìý And I was interested by Deborah talking about the narrative of the family and of course Mr Morris also has a narrative but if we think about his narrative his narrative intersects with the narratives of the family and now it intersects with the narrative of the occupational therapist and everybody else, so that's why the decision becomes such a. an important decision and b. highly complex one because all of those different strands have to be in some way brought together.Ìý I have to say that's encouraged by what's called the best interest checklist in the Mental Capacity Act which does say that anybody who's involved - their views need to be considered and somehow weighed up.Ìý What it doesn't do, is it doesn't do the sort of weighing up for you, that requires the ethical judgement which is of course the nub of the matter.

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PARRY

Because you often hear people talking about oh they're not themselves and oh they wouldn't like that, I mean oh I don't know but they wouldn't like not to have their hair brushed because they were always very fastidious about their hair, that sort of thing.Ìý How much do we take that into account?

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BOWMAN

I mean I think the language is terribly interesting because you do hear it all the time - he's not himself, you don't know what he/she was like.Ìý I guess there are two things that strike me about that.Ìý The first is that I'm very different from how I was five years ago and 10 years ago, I think many of us are, we change.Ìý And the second thing is that actually it depends almost on this unattainable consistent thread which probably few of us have actually and it might be about being situated in now.Ìý Even if they didn't want their hair parted in that way 20 years ago, what about now, what are their interests now, does it matter, is this person objecting.Ìý And I think we've talked about consent and we've decided that's not possible but assent and refusal may still give us a very strong sense of what somebody wants now.Ìý So whether they are different or somebody else or whatever language one wants to use they're a person now.

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HUGHES

Yes I mean Deborah - it seems to me a very important point because I think there is a danger in the Mental Capacity Act that once we've decided someone lacks the capacity to make a particular decision we then ignore their views.Ìý And the act is very clear about this, that under best interest you must not - part of your task is to try and obtain views of the person, him or herself, even though those views may not be fully capacitous views and that that needs to be weighed up as much as the views of relatives or the medical opinion or whatever needs to be weighed up.

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PARRY

Should we be taking in account his religious beliefs, which we've been told are quite strong?

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HUGHES

Absolutely and again the Mental Capacity Act is clear on that, that if someone has longstanding religious beliefs that are directly relevant to the decision in question then yes that should be part of it.Ìý And there may be certain circumstances where they would be predominantly determative of what should happen.Ìý There may be other circumstances in which they're relatively minor in the broader context of the decision.

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PARRY

Deborah, I want to go back to his family because are their interests always entirely separate, I mean you've hinted that they're not but you know who's interests should come first?Ìý I mean clearly one could drive Mr Morris's daughter to the brink of breakdown by his demands.

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BOWMAN

Yes and I don't actually think it's quite as adversarial as it potentially seems in that one either goes with him and leaves her entirely at the point of breakdown or one goes with her and overrides his rights.Ìý And I think it would be possible to put in support for her, to look at more imaginative ways of caring, that may well involve people of whom the family has no knowledge at the moment.Ìý I can think of several examples of patients where the families are surprised to find that they were part of a thriving community related to some hobby or interest or other group - it may be the church.Ìý So I don't think you necessarily have to put yourself in the position of abandoning one over the other.Ìý However, ultimately the way we construct ethics and law, actually, probably more particularly at the moment, Mr Morris is the patient and therefore priority will be given probably to his interests.

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PARRY

Julian, what would you do when you have a family who - I mean presumably it happens rather a lot - would come along and say he absolutely cannot live at home but we can't care for him?

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HUGHES

Well I think the reality is that what we do we spend a lot of time talking with people and this comes back to what we were saying before because talking with people can be a bit awkward, it can be emotionally upsetting, there can be a lot of very strong views expressed and it does take time.Ìý But I think that is actually what we do.Ìý I mean there is a whole strand of ethics which sometimes gets called communicative ethics which broadly states that you're likely to do the right thing ethically if you get the communication right and I think that's the sort of thing that Deborah was really referring to - that if we give the family time to express their views and their concerns and we show that there may be ways of helping them and we give them ways to think about things it may make the ultimate decision in favour of Mr Morris more palatable for them.Ìý One thing that would be quite tough to tell them and might be even tougher for them to do is that they might have to realise that they're going to have to be incredibly honest and sometimes people just find it very difficult to be honest in the context of families, they might actually have to say we can no longer do this for you and that's just the reality then which Mr Morris has to try and grasp, even it's rather difficult for Mr Morris to grasp that.

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HOLLAND

Yes I think there's another issue here too and that is that as his daughter it must be very painful to suddenly discover the conditions that your father has been living in - you've lost - I think his wife died not that long ago.Ìý So the daughter here may be in a state of some grief and distress about the fact ...

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PARRY

And also some guilt ...

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HOLLAND

And some guilt maybe but ....

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PARRY

She didn't know about it.

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HOLLAND

Absolutely and here it is the person that you've loved and continue to love is living in this state, you're torn between your duties to other - perhaps your family, your immediate family and your duties to your father.Ìý This is very difficult and I mean I think part of the task really, as Julian described, is to help her in a sense work through that so that she can be part of a planned way of intervening and supporting a father that she feels comfortable with and at the same time respects, as far as one can, his wishes under this phrase best interest.

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PARRY

You're listening to Inside the Ethics Committee on Â鶹ԼÅÄ Radio 4 and we're discussing the case of Mr Morris, an elderly man with a moderate level of dementia. He insists on living at home but needs a great deal of help to do so.ÌýÌý Previously he's refused help from professionals and wants his daughter to provide all he needs.

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An elaborate care programme has now been arranged for him.

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DOCTOR

We then devised what we consider was the safest strategy for looking after him at home.Ìý We then went to social services and asked them if they could help us provide this package of care because that's their role in this situation.Ìý They then had to do a financial assessment and they found that Mr Morris had enough money to pay for this care.Ìý However, because he was refusing to pay for it and also was felt not to have the capacity to decide on whether he needed this care social services agreed to pay for the care in the interim whilst the family applied to the Court of Protection for control over Mr Morris's finances.

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OCCUPATIONAL THERAPIST

And he agreed to care to go in to help him, which was good because we weren't sure whether that would happen because in the past he turned care away several times.Ìý The psychiatrist particularly wanted to know if he'd agreed to the care to go in but he did and he signed for that, so that all worked quite well.

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PARRY

So Julian he signed for care and said the psychiatrist was very keen to understand that he had really agreed to all of this, I mean what's to stop him once he gets home from saying you shall not pass my door and not letting anyone in, I mean what would anyone do then?

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HUGHES

Well there's nothing to stop him from doing that.Ìý One of the quotes, which I can't give you exactly, that I love is from a physician called Simon Winner in Oxford who once said, wrote in a book, that if a unit didn't have failed discharges it wasn't a good unit.Ìý In other words we should be on the side of the person and take risks and try to get people home and occasionally it won't work.Ìý I suppose the ultimate thing is that if Mr Morris refused all care then in the end there might be other sanctions that could be taken.Ìý So, for instance, if in the end it was felt that you could say that he had a mental disorder and that his health was suffering you might want to think about using the Mental Health Act, rather than the Mental Capacity Act.Ìý You might want to use the Mental Health Act to bring him into hospital for further assessment.

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PARRY

Deborah, I'm getting the impression that elderly people are sometimes treated almost as a piece of flotsam, they're kind of swept along in the tide, and all - as children, you know not really considered properly.Ìý What are the general ethics of dealing with older people?

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BOWMAN

I think what we're seeing now is that inevitably perhaps once somebody encounters the health and social care system in an acute way, as Mr Morris did, there then is a systemic response that individual professionals will be incredibly kind, caring and ethical but systemically there is a momentum.

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PARRY

And how does that typically manifest itself?

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BOWMAN

It may manifest itself in very small ways.Ìý The language we use - immediate first names or calling people dear etc., meant well, no malign intent at all.

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PARRY

Are there always the resources to do what's ethically best?

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HOLLAND

That's a very difficult question and I'm not certain, the answer must be no I think to that and I think in all fields there are never enough resources.Ìý And I think at the end there will be a compromise in terms of what is in this person's best interest and what is possible to deliver for them.Ìý And that actually may vary depending on the resources of the individual themselves, it may vary from different parts of the country depending on the investment that is made in that part of the country.Ìý And it is but part of this difficult equation that people have to sort of try and resolve.

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BOWMAN

But I think we do know that there's quite a lot of catch up in care of the elderly and particularly in the area of mental health.Ìý There have been various reports, indeed one this week, about the ways in which older people perhaps collectively we've all assumed that getting older is just not very nice and a bit difficult and you've had a good life.Ìý One hears that and therefore care hasn't always been how it would be if somebody were 35 rather than 75 or 85.

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PARRY

And it seems that you get the double whammy with mental health and being older, I mean it just sort of conspires to give the worst of care.

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BOWMAN

Indeed and I think there are some fantastic policy documents that have come out recently, most notably actually the consensus statement on older people and mental health.Ìý However, it remains the case I would say, and I don't know if Tony and Julian would agree with me, that you have effectively two Cinderella specialties traditionally coming together.

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PARRY

Okay, well I'm now going to ask you each of you what your advice would have been in this situation.Ìý And Tony, let me turn to you first of all.

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HOLLAND

Well I think I would say, first of all, I'm impressed by what we've heard about what the services have done and I would be very supportive of the idea of introducing Mr Morris back to his house to see how he could cope.Ìý So I think I would be inclined to try and set up appropriate support for Mr Morris to live at home in a way that may help his daughter feel that she doesn't - isn't overly burdened herself in having to provide care.Ìý But I think I would also have to recognise that we know that dementia is a progressive illness, that there are going to be new problems and so on, so one needs to make certain that services are really fully engaged here and one will need to work with Mr Morris to ensure that he is continually willing to engage with services and then address the problems that arise, for example, if he refused access to people or whatever and you may have to reconsider then what his best interests are.Ìý But I would wish to see him return home but with adequate support provided by local services.

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PARRY

Julian.

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HUGHES

I would agree with everything that Tony said.Ìý I think that this seems to have been a case that was well handled and decisions weren't made in a sort of offhand manner, people did stand back, they did take risks on behalf of Mr Morris and I think it was a good outcome.Ìý I think that the other thing that Tony's already said which needs emphasising is just the follow up, that it's obviously crucial in somebody like this who is vulnerable and all sorts of things may happen once he's at home, it's absolutely crucial that somebody has engaged with him and is keeping an eye on him.

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PARRY

So you would let him go home?

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HUGHES

Yes.

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PARRY

Deborah.

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BOWMAN

Unanimity rules it seems.Ìý I too would like Mr Morris to be able to go home, at least for a trial period, I would see that as part of the process of getting to know him, getting to know more about him.Ìý I also feel that there are things that one could do and probably this team will do for his relationship with his daughter, that maybe about mediation, maybe about facilitating discussion, maybe about pointing her in the direction of resources for carers.Ìý And probably brokering some quite difficult conversations.Ìý But on the whole I agree absolutely with Tony and Julian.

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PARRY

So can I thank all our panel today, Deborah Bowman, Tony Holland and Julian Hughes and let's find out what happened in the real case.

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DOCTOR

Mr Morris remained at home for about three months after this discharge from hospital.Ìý He was then unfortunately readmitted to the acute district hospital with pneumonia.Ìý He did recover from that bout of pneumonia and again had a period of rehabilitation but he didn't improve sufficiently at that point for them to feel that he was capable of returning home, so he was discharged to a nursing home.Ìý He was in the nursing home for about two months before unfortunately he had another bout of pneumonia, from which he died.

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PARRY

You've been listening to Inside the Ethics Committee and if you'd like to have your say, or find out more information about the topics covered in this programme then go to bbc.co.uk/radio 4 and follow the links to Inside the Ethics Committee, where you can leave your comments. Or you can call the Radio 4 Action Line on 0800 044 044.

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On next week's programme the explosive ethical dilemmas created when a local authority want to test a baby in their care for a genetic condition before offering him up for adoption.

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ENDS