Episode 1

David has been diagnosed with a treatable form of cancer. David finds all hospital procedures extremely distressing and doesn't have spoken language. Can he give consent?

Release date:

Available now

45 minutes

Last on

Sat 1 Sep 2007 22:15

Related topics

Programme Transcript

Downloaded from www.bbc.co.uk/radio4 

THE ATTACHED TRANSCRIPT WAS TYPED FROM A RECORDING AND NOT COPIED FROM AN ORIGINAL SCRIPT.  BECAUSE OF THE RISK OF MISHEARING AND THE DIFFICULTY IN SOME CASES OF IDENTIFYING INDIVIDUAL SPEAKERS, THE BBC CANNOT VOUCH FOR ITS COMPLETE ACCURACY.

 

 

 

INSIDE THE ETHICS COMMITTEE

           

Programme 1

 

 

 

RADIO 4

 

WEDNESDAY                       29/08/07          2000-2045

 

PRESENTER:                       VIVIENNE PARRY

 

CONTRIBUTORS:               DEBORAH BOWMAN

                                          JOHN ROBERTSON

                                          TONY HOLLAND

 

PRODUCER:                       PAMELA RUTHERFORD

 

 

 

 

 

NOT CHECKED AS BROADCAST


PARRY

Hello. Over the next three weeks on Inside the Ethics Committee I'll be presenting real life medical cases, each posing a complex set of ethical dilemmas, to three different panels of experts, drawn from the clinical ethics committees that sit in hospitals up and down Britain.  We'll be hearing testimonies from the people involved in each  case, and showing the process by which these committees weigh up the ethical dilemmas, and then give their advice.

 

And, having heard each programme, 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.

 

In this the first programme of the new series, our panel will be picking their way through an ethical minefield - what happens when there's a question mark over someone's ability to give informed consent to potentially life saving treatment?  Today's case concerns a man with severe learning disabilities.

 

And now let me introduce the panel here with me in the studio today to talk through this case.

 

Dr Deborah Bowman is a senior lecturer in medical ethics and law at St George's University of London and until recently she was a member of the clinical ethics committee at St George's Hospital.

 

John Robertson is a clinical psychologist who's also chaired a clinical ethics committee for a learning disabilities service for Nottinghamshire Healthcare Trust.

 

And finally Tony Holland, professor of learning disabilities in the Department of Psychiatry at the University of Cambridge.

 

So let's have some details of today's case.  It involves David, a man with severe learning difficulties, he's lived in institutions most of his life and has no family or friends outside the small residential care home where he now lives. Let's hear first from his learning disabilities psychiatrist.

 

PSYCHIATRIST

David was a middle aged man who did not have any spoken language.  Of course he was able to express preferences by let's just say pushing certain foods away he didn't like or retreating to his room when he felt like it.  Although of course when he's unhappy and under stimulated he then became agitated, restless, often aggressive as well.  So for David it was possible to let people know how he felt and what he wanted.  But if you used a very simple and short sentence with only one bit of information related to his daily routine David would have understood that.  Whereas more complex information he wouldn't have been able to understand.

 

PARRY

And now let s hear from the manager of his care home

 

CARE HOME MANAGER

He felt safe and secure within the home environment with faces that he was very familiar with and more or less set routines - that's what he felt comfortable with.  But to take David out of that environment it always increased his levels of anxiety and he got very distressed and could be very disruptive if he was taken anywhere where he felt enclosed.  David couldn't communicate at all by picture form, he didn't understand any form of sign language, we had to assume if he had pain just by the way that his sort of day had changed.  So mainly we communicated with David by really knowing him really well.

 

PARRY

But then David became ill

 

CARE HOME MANAGER

I can remember quite clearly.  I'd had the weekend off and I came in on Monday and one of the staff said that David had lost his appetite and he hadn't been eating very well over the weekend which really sort of made alarm bells ring because that wasn't David at all. So I monitored him on the Monday and he was trying to eat but he started urging and we thought maybe at first that this probably had got a bug, he'd picked something up, it was just general sort of not feeling well.  But on the Tuesday when he was still the same I made an appointment with the GP and when we went to the surgery and saw the GP and  knowing David's past history and how we described David then he said more or less straightaway that he felt we should have an endoscopy so that they could do further investigations.

 

PARRY

Endoscopy is a way of seeing the stomach by pushing a tube with a camera on the end of it through the mouth and into the gut.  Patients are heavily sedated during the procedure.  The gastroenterologist found a large tumour in David's stomach. A biopsy was taken for further examination.  It was bad news.  David had a high grade lymphoma, a type of blood cell cancer.  But how can this be explained to him?

 

CARE HOME MANAGER

If you showed David pictures he would take the picture out of your hand and probably tear it up. He wouldn't even stand still probably long enough while we explained to him.  He did go to the hospital, the doctor was excellent, the doctor sat in room and spoke to David as he would speak to you and I and explained what the diagnosis was and what the treatment was but David didn't comprehend anything of what he'd told him.

 

PARRY

So there we are.  Deborah you're a lecturer in medical ethics and law, just summarise for us what are the main ethical issues raised so far by David's case?

 

BOWMAN

I think there are three principle issues that this case raises.  The first is what we call capacity and that is whether or not somebody is able to make decisions about his or her own care.  The second is - comes under the broad heading of best interest - what it means to act in someone's best interest if they can't decide for themselves.  And finally the broader issues relating to vulnerable groups in the NHS.

 

PARRY

Before we go on with David's story I want to just explore this whole question of capacity with you all.  What's the importance of someone's ability to make a decision about their treatment.  Tony.

 

HOLLAND

I think we now increasingly recognise that when it comes to healthcare and for other decisions in one's life as well as health decisions it's for the individual to make those decisions for themselves.  The problem of course is that there are people who may not have the ability to do that and so one needs a solution to that particular issue - how is it that we can proceed with treatment when someone lacks the capacity to consent to treatment themselves because consent is what makes treatment lawful, essentially.  So if someone can't consent you need a way around that issue.

 

PARRY

John.

 

ROBERTSON

I think there's also a history with people with learning disabilities and their interface if you like with the health professionals.  That very often in the past they were assumed as not able to make decisions for their own healthcare and increasingly evidence shows that those people - very many of those people who were previously ignored can actually take a view on what healthcare they can receive and that is listened to increasingly within the NHS.

 

PARRY

Deborah, the importance of capacity.

 

BOWMAN

Sentimentally everything flows from it, it's a legal construct, so it's something that the law has decided is necessary and there are tests that are used.  But from that all choices - the right to self determination - flows.  As John said I think it's very important that it's a functional test, so it's about what somebody can or can't understand at that time rather than making assumptions based on a diagnosis or a history or even prior knowledge of a particular patient.

 

PARRY

You were talking about tests, I was going to ask how do you decide on capacity, I mean for instance can we make any assumptions about David from what we've heard so far?

 

BOWMAN

Okay.  I think the first rule is that one doesn't make assumptions.  Yes there are tests but effectively what one's looking for is whether the person in front of you can understand sufficiently what's being said to him or her, can remember it - not forever, not even for a particularly long time but long enough in relation to the decision that has to be made - and that they have some sense of pros, cons, consequences and can weigh those up to make a decision and crucially that they can communicate that.

 

PARRY

But Tony, David has these really communication difficulties, are there ways of increasing his ability to be able to communicate?

 

HOLLAND

I think that's very important and in fact that's enshrined in the Mental Capacity Act that I know we'll talk about in more detail.  But there is an obligation upon those that are trying to seek consent for someone who may not be able to give it to try, for example, to impart information to them in a way that makes it easier for them to understand.  Now this may not be the case here with David but for many people with learning disability if you speak with small or shorter sentences, dealing with one issue at a time, or if you use photographs or drawings, there are books available.  All these sorts of things may make it easier for the person to understand and if they can understand they then may be able to communicate their own wish about the particular decision in question.

 

PARRY

John, are there many examples of I suppose what you would call it as maximising capacity?

 

ROBERTSON

There are and I think there's a combination of professionals who've worked hard over the years on this - speech and language therapists particularly leading the way and psychologists and psychiatrists and nurses as well - in trying to find different means and make the information as relevant as possible to a person, so that might be using photographs involving that person, involving people known to that person but also involving symbols - increasingly people understand symbols that are either in picture form or actually through sign language symbols.  So that when you're trying to convey something new they're more likely to understand that than they might have done if they didn't have those means available to them.

 

PARRY

But we've already heard that in David's case that he doesn't get on well with pictures so Deborah is there a more formal way that we can assess David's capacity?

 

BOWMAN

There have been lots of attempts to come up with formal tests.  I think it's fair to say that there still isn't a universally accepted and used tool and different clinical teams perhaps rightly given the diversity of situations they encounter will do different things.

 

HOLLAND

Can I just follow up this issue of tests because my feeling is that it's probably the wrong word to use?  But I think what one's trying to do here is to make a judgement and I think what makes the judgement reliable is that if you follow a system that first of all understands what we mean when we talk about someone having - being unable to make a particular decision and then going through it in stages and so you present them with the information and then you try to find out from them whether they understand it or not, whether they can reason with it, whether they see the alternatives in terms of if they choose this decision versus this decision.  And that obviously that they can then communicate that to you and they appreciate that it is for them to make this decision.

 

BOWMAN

And I think what Tony and John have both picked up on is actually the power a clinician has in bestowing or not capacity upon somebody, so to think of it as a test that one passes actually might not be helpful ethically, perhaps it might be more helpful to think about the processes that are involved in being a good clinician assessing someone's capacity.

 

PARRY

And of course in particular if the person does not come to the decision that perhaps you think they ought to come to.

 

HOLLAND

Well that's right and that of course is what causes people the greatest concern.  They may be people that of course appear to agree with what you've asked them and you might not even then assess their capacity, so you don't really know whether that's a capacity of acceptance of the advice that you've given them.  But of course when they refuse, and particularly if someone refuses when the treatment may be life saving, then of course there is great concern.  And it's at that point that I think you really do have to be very clear about whether the person understands and to go through this process, use the types of situations that John described and try to help someone understand but recognising that at the end of the day there will be people who do not understand, who do not have capacity and we then need to able to respond to them appropriately because they're entitled to treatment.

 

PARRY

But just because someone has come to what one might think is a perverse decision doesn't necessarily mean that they haven't had the capacity to understand.

 

HOLLAND

Absolutely not and again the Mental Capacity Act is very clear about this as well that apparently making a decision that you may disagree with is not an indication in itself that someone lacks capacity.  It may be an indication that suggests you should enquire whether they really understand but at the end of the day if someone does understand, is making a particular decision that you may disagree with it is for them to make that decision.

 

PARRY

Now the Mental Capacity Act is about to be enacted in October this year.

 

HOLLAND

It fully comes into force in October of this year yes.

 

PARRY

And what will the main changes relating to capacity be in that?

 

HOLLAND

I think the most important thing about the Mental Capacity Act is that it brings into statute really what exists at present in common law and gives it a formality.  And I think very importantly in that context it sets out certain principles that should guide you in that process.  One particularly important principle is that there should be a presumption of capacity - so just because in this case David has a learning disability you should not presume he lacks capacity, your starting point is to presume he has capacity unless there's evidence that he doesn't.  And it provides an appeal mechanism in the event of disagreements that can't be resolved in any other way.

 

PARRY

Deborah, how does this new law then help David and is it significant that there isn't anyone else - close family or something or someone who has some sort of legal power of attorney - to help him with decision making?

 

BOWMAN

To take the first point - how it helps David.  I think what it does is put capacity squarely in the minds of everybody who is looking after David.  It also very clearly, the act, very clearly emphasises that for patients - people - who don't have third parties around who may be able to represent them or advocate them that there is now a systemic way in which they can be advocated.  So, for example, David - there will be an obligation upon the clinical team if David doesn't have capacity to talk to his carers, perhaps the GP who indicated he knew him very well and to involve other people but always as a means of advocating what David would want.  In the absence of those people being able to advocate David - his family and friends - then there is another formal mechanism under the act that sets up an advocacy system for David.  So it's providing protection both for David but also actually for the clinical team potentially in that it gives them much clearer guidance as to what they should be doing and how.

 

PARRY

You're listening to Inside the Ethics Committee.  Today we're discussing the case of David, a man with severe learning disabilities who's just been found to have a lymphoma in his stomach.  In order to confirm the location and extent of his cancer and the best course of treatment David needed a CT scan.  The manager of his care home takes up the story of what that involved.

 

CARE HOME MANAGER

That was very difficult.  The scan was obviously going to be where David had got to keep completely still so a medication was arranged and it was taken lightly, we'd consulted with the doctor and there was like a best practice meeting that this must happen because obviously we can't just give medication unless it was essential and that it was necessary for the procedure.  We felt quite traumatised for him because we knew that when we got there we'd got to give something to David that he hadn't actually consented to.  We got to the hospital and it was quite difficult because the communication hadn't got through and they hadn't actually got the medication ready.  So we had to wait with David in a waiting room and he got more and more anxious and more and more distressed.  Halfway through the scan he woke up and got really, really anxious and really distressed and they had to administer more so they could finish the scan.  It was terrible for me and the member of staff that I was with because we really felt for him because this was so out of character for David's day and it was worse because we couldn't actually reassure him, apart from holding his hand, we didn't know when we was reassuring him whether David could understand what we were saying and by the look on his face, you know, how anxious he was, and how distressed, I don't think he could understand.

 

PARRY

Clearly a horrible experience for everyone there.  But after all of that what was the news from the scan.

 

HAEMATOLOGIST

That revealed the stomach tumour but in addition the fact that it had spread outside the stomach.  So that meant essentially that an operation was not a feasible proposition.  So the treatment and indeed is usually the case with lymphomas the treatment would be with chemotherapy.  Chemotherapy regimes vary but the chemotherapy regime for this lymphoma would have involved three weekly courses of treatment involving four drugs, three of which would be given intravenously.  This involves the insertion, usually into the arm, of what is called a cannula into a vein.  Having inserted the cannula the cannula is then connected to a bag of saline solution.  Three of the drugs are then given by injection into that system and the fourth drug is given as an infusion which it drips in over several hours and that will be repeated every three weeks.  And usually for six courses, although the number of treatments is determined by the response to treatment which would have required further CT scans to be done at intervals during the treatment.

 

PARRY

So an arduous treatment regime for anyone.  What were the implications for David in terms of his survival?

 

HAEMATOLOGIST

In this sort of lymphoma we would expect approximately 50% of patients to be cured of their lymphoma with the sort of treatment I've outlined.  The problem that was applicable to David's lymphoma was that it was in the stomach and there are actually particular complications that can occur during treatment that probably made that 50% outcome slightly optimistic.  But as a guide that is the sort of outcome we would expect from treating this sort of lymphoma in a man of David's age.

 

PARRY

Realising the extent of treatment that might be needed David's consultant and also his GP were concerned about his ability to give properly informed consent.  They contacted his learning disability psychiatrist, their worry was could David be given this treatment at all.

 

PSYCHIATRIST

I suggested that in order to establish in a more formal way David's lack of capacity to give informed consent and to look more thoroughly into what might be in his best interest I suggested to meet up - that is to say all the professionals involved, David's carers and members of his family, if there was any - and then discuss what might be in David's best interest.

 

PARRY

And that's what happened.  All those involved in David's care met to discuss the ethical issues his case raised and in particular what his best interests were.  Best interests - John, how does deciding about best interest differ from decisions about capacity?

 

ROBERTSON

I think decisions about capacity, although as Tony said they're not based on a single test, are based upon a number of more objective procedures.  Best interest is much more value laden and much more open to different people's points of view and different sort of cultural, religious, personal views.  And as a chair of an ethics committee we see a whole range of different views being presented to us where we seek those we go out and find from the different people involved with individuals referred to us, if we speak to families they sometimes present a whole range of different views depending on their own backgrounds and their relationship to their son or daughter about whom our referral usually applies.  So there isn't some single way of approaching it and certainly there's no single profession that is best placed or solely placed to address it, although we all have good practice guidelines to adopt.

 

PARRY

So if there's no single person or body that can do it whose job is it, Tony, to decide what David's best interests are?

 

HOLLAND

Well I think this is an interesting issue and I think John and I might slightly disagree on this.  I think I would have stepped back a little bit here and say well what is the decision that we're saying this person David lacks capacity to make?  It's the decision that would be required of him if he had the capacity is whether or not to consent to the treatment that is being suggested by the doctor.  So I would argue that in his case, as he lacks capacity, it is the doctor that ultimately has to decide what is in his best interest in terms of proceeding to treat or not to treat.  Now as John quite rightfully pointed out to do that there is an obligation now to consult other people.  It may be relatives, if they exist, it may be paid carers, there may be an advocate that is appointed or whatever.  But at the end of the day the doctor's obligation is to act in that person's best interest in terms of balancing the benefits of treatment against the risks of treatment.  So in this case I think it basically rests with the doctor who must and is obliged to consult.

 

PARRY

Deborah, is it difficult to think about someone's best interests really in a way that's divorced from your own expectations because I guess that you would always put yourself into that person's shoes and say well this is what I would want. So is it really in someone's best interests or really are you thinking of yourself?

 

BOWMAN

I think it's very interesting because the whole thing is an artificial quantification if you like.  I think what Tony said is very interesting because although it might rest with the doctor the courts have been very clear that best interest is about more than just medical interest, and that is what a doctor is trained to evaluate.  So one has this slightly curious mismatch between the doctor's responsibility and what is being evaluated.  As to the question of whether or not one is always putting oneself in that position, I think inevitably that's a human tendency, I think perhaps so that there are ways in which you can think about different situations, you could think about what it might be like to be somebody else - empathy is a fundamental criteria in healthcare and we would hope that most people have the ability to imagine other people's perceptions rather than simply superimpose themselves on the decision.

 

PARRY

So if you were on an ethics committee what particular points would you be pulling out about David in order to judge what were in his best interests - bearing in mind he has no family?

 

BOWMAN

Sure, okay.  Well I think there are several things.  He may not have family but we do have a sense of David, even from the short clips that we've heard.  He clearly has strong relationships or established relationships with his carers.  I think I would want much more to question that, to interrogate that, to understand whether or not he does have values that inform his daily life and if so what those are.  We've heard about fear and anxiety, I would want to know about strategies that might be used, I would want to know about how much he can or can't understand the concept of the future.

 

PARRY

Is it hard to judge people's quality of life because again we make very, very subjective views of other people's quality of lives?

 

BOWMAN

I think it's impossible.  We know that capacitors people make decisions in cancer care that are not understood by their clinical team, they seem bizarre because, for example, the patient wants to spend time with a grandchild rather than to be sick from chemotherapy.  None of us knows really what somebody else's quality of life is about.

 

HOLLAND

Can I just return to this issue of if you like how narrow and how broad best interest is because I absolutely accept what Deborah says is that best interest is seen as a fairly broad construct, it isn't just medical best interest.  But remember that we're talking here about the decision in question, the decision in question isn't generally about his life, it is about whether or not to proceed with treatment and whether it's his best interest to proceed with treatment.  So it seems to me the starting point must be the consequences of not proceeding with treatment is his death.  That's the seriousness here.  And therefore if one isn't going to go ahead with that there have to be very sound reasons for not.

 

PARRY

How would all the problems that he has with sedation, with the distress caused by treatment, how much would that play in your advice to an ethics committee about David's case?

 

HOLLAND

It's clearly very important.  I think I would place the emphasis there on if these are issues such as the need for sedation or his distress in strange environments is what can you do that might ameliorate that, are there strategies, techniques, that you might do?  So you might visit the scanner with him, a member of the care staff who he knows well might lie down on the scanner and demonstrate that it's perfectly okay, it doesn't hurt.  There are a number of things you could do providing people are committed to trying to find a way to overcome those rather unique and rather serious difficulties that faces David in this particular situation.

 

PARRY

But you can't ignore those surely?

 

BOWMAN

No I don't think you can and I think there are all sorts of things embedded in this that we're not talking about, for example the nature of what it means to be a human being, what it means to live an acceptable life.  And I think any risks and benefits discussion, although it might be represented as a purely medical risks and benefits, has within it notions of what it means to be a person, what it means to be alive, even whether death is actually ultimately the harm you want to avoid.

 

PARRY

I mean how do you weigh up - I mean this is the sort of the life, the universe and everything question - but how do you weigh up quality of life versus quantity of life and present distress versus future life?

 

ROBERTSON

I don't think there's a simple answer to that and we in our ethics committee have addressed similar related issues on a number of occasions and I think there's been a thread of consistency in what we've said but it's changed from person to person.  And I can think of people as disabled or even more disabled than David where we've been dealing with very fine aspects of quality of life.  For example, a decision to stop feeding someone through their mouth because of the risk of them choking and taking too much of their food into their lungs and then give them a peg tube feed has sometimes been made more difficult by the fact that that very disabled, physically disabled, person their quality of life might depend on simple matters such as the taste and flavour and texture of food in their mouth.  Parents on some occasions have said we would be very worried about the person, our son or daughter, losing that experience by having the peg feed because they have such a limited quality of life.  It depends on things like this in a big way.  And I think it's about how you sort of use a telescope sometimes upside down in these situations to re-check what matters for this person and how much their experiences have to be taken into account.

 

PARRY

Is it even ethical Tony to even look at quality of life?

 

HOLLAND

Well that's interesting you ask that because I was just about to say I wonder - I think in this situation I would argue that the advice that David and the care staff have received that there's a 50% or just under 50% chance of cure here, so if he's cured then I presume he will return to the quality of life that he had before and therefore in a way isn't that in itself acceptable?  Now if that quality of life isn't good that's a different issue altogether, it's nothing to do with his treatment.  So I wonder whether it is ...

 

PARRY

But Deborah you disagree I can see.

 

BOWMAN

I don't disagree, what I think is very interesting is the word presume in that sentence because yes Tony could make an extremely cogent case for him returning to a life that he has known.  However, relationships may have been damaged, he may have been - the very act of taking David to the hospital with people whom he trusted may have sabotaged relationships, he may have - sequela life treatment, we don't know.  And what we're doing here is predicting the future, we are all making assumptions.  I can make a cogent case that he wouldn't necessarily go back to that life and neither of us is right and neither of us is wrong.  And that's the difficulty with using consequences to determine best interest and yet that's what we do.

 

PARRY

Well let's hear now what those people who were at that committee that looked at David's case thought.

 

HAEMATOLOGIST

The actual delivery of the treatment - the chemotherapy - I could only have imagined could happen if he was sedated for it, in the same way as he'd been sedated for the CT scan.  And the trouble was that that was, as we knew, a very stressful episode and the thought of repetitively subjecting him to that, even if the chemotherapy otherwise had gone along without any complications and there hadn't been a need to admit him to hospital, which would have been even more traumatic, it really was going to be a huge problem for him and a huge problem inflicting that upon him.

 

PSYCHIATRIST

One of my first thoughts were in how far David would be able to tolerate that sort of treatment.  Just imagine that you were unsure what you coming into hospital for, or what hospital was in fact, and you arrived there and then people tried to put a needle into your arm and give you an injection and you have absolutely no concept about what's going on there.  So you'd really feel violated.  Very traumatic experience, no doubt.  And that, in my opinion, would have been David's experience.

 

CARE HOME MANAGER

For David to receive the treatment I think he would have thought that carers were treating him cruelly.  He'd got all his trust in us. He'd got to know us. We were his family. And to put him through anything like that I think David would have got more distressed because it was people that he'd got to know and trust that were actually restraining him in a way and putting him through all that anxiety.

 

PARRY

Well this case highlights the very individualised difficult decisions that are made when patients have learning disabilities.  In the last part of our discussion we're going to explore the broader ethical issues raised by David's case and in particular those around medical discrimination.

 

PSYCHIATRIST

I do think that people with communication and learning disabilities are actually discriminated against. I think it's often very difficult for professionals to relate, understand and communicate with clients who have severe difficulties in that field who aren't able to give informed consent.  And I think often not enough thought is given to acting in their best interest.

 

PARRY

The learning disabilities psychiatrist involved in this case was clearly very concerned that there should not be any discrimination and that David should have equal access to treatment, but Deborah is that always the case?

 

BOWMAN

I think we know that people with learning disabilities do receive differential and sometimes sub-optimal treatment.  We know, for example, that chronic disease is less well managed in people with learning disabilities than the rest of the population.  We know that women with learning disabilities are less likely to get adequate breast screening, for example.  I think there are systemic problems and I would be very hesitant to suggest that this was due to any lack of care.  I think it is partly a training issue, an educational issue, a confidence issue but also a time issue.

 

PARRY

I think in fact, Tony, that the Disability Rights Commission published a report based on the experiences of those with learning disabilities in the health services, what were their main findings?

 

HOLLAND

I think the main observation - and this has been well recognised for some time - is that people with learning disabilities have significant health inequalities, so they have significant higher rates of certain illnesses - there may be mental health problems or physical illnesses - than the general population.  And they may have greater problems accessing, as Deborah said, screening services or accessing treatment.  But I fairly strongly agree with what Deborah said - I think there is likely to be, if you like, discrimination there but I don't think it's necessarily malevolent, I think it's because working with people with learning disabilities isn't always easy.  And if someone can't easily communicate with you that does put up a barrier and there is a really important issue about how we train NHS staff to support people with learning disabilities but also people, for example, who've had strokes or people with dementia, that the issues are rather similar and is how do you communicate with someone who can't readily communicate with you?

 

PARRY

John.

 

ROBERTSON

But I think one of the things that doctors, in particular, who are the ultimate deciders over treatments are learning rapidly over the last few years is that they do need to take more care about communicating with and making sense of the person in front of them and I'm impressed in David's case the doctor did actually take that sort of care trying to speak to him and with him, although it might have appeared at first glance that that was a completely forlorn exercise.  But there are still doctors to this day who are requiring more guidance or more motivation, if you like, to consider the persons special needs to perhaps have communication effort made in their direction and that works both ways, I can think that might be where a doctor presumes very quickly the person doesn't have capacity and presumes straightaway that they should address their best interests by insisting on a medical procedure going ahead or the flip side where they determine that the person really cannot make sense and that really there is no point in proceeding with this.  But the second decision gets more complicated because the doctor's making a whole load of early judgements as well and I think that still is occurring.

 

PARRY

Is discrimination ever dressed up in a kind of clinical disguise where people assume that those with learning disabilities are not going to do as well as other people on treatment?

 

HOLLAND

I think this is a difficult issue that and I'm sure the answer is probably yes, I think one is trying to make however a distinction between are there particular issues with this individual that makes this treatment more complex, more risky than perhaps it would have done if the person hadn't had these particular problems, hadn't had a learning disability?  But I'm sure you're right in your question that the danger is, is that then becomes an excuse for not offering the treatment to the person.

 

BOWMAN

And I think picking up on that we can't remove values from judgement, we can't do that, what we can do is challenge people's values, even just elucidate them.  Most of us the nature of an assumption is you don't know you're making it and that's where discussions like these and discussions like the team had are valuable because you suddenly find that what seemed utterly sensible to you is utterly alien or challengeable to the person opposite the table.  It's not to remove values, it's to interrogate them and see whether or not they are appropriate to this particular case because you will be using judgement.

 

ROBERTSON

Can I come back to something that is also particular about David's case and that is that there are no relatives, no people who are, if you like, tied to him through family or whatever.  The people most involved with him are his carers and it gets very difficult trying to disentangle their values from what might have been his.  And you don't have his family to say well our family values are this and that, although families have difficulty in articulating that you can usually get an idea of what their values are.  And David and a lot of people who were in hospital and perhaps got disconnected from their families over the years have to rely, if you like, on those carers and their commitment to him to express their values and they can be very difficult when the carer is being paid to come and do often an emotionally challenging job and they're often dealing with the immediacy of the situation, the immediacy of facing that stress.  And so part of the discussion process is trying to help hear that but being impartial about it and put it on one side so it doesn't invade the weighing up of the different values that are being discussed and weighing our decision.

 

PARRY

Okay, so if you three had been on the clinical ethics committee discussing David's particular case what would your advice have been about whether or not he should have treatment?

 

BOWMAN

I think my advice would have been predicated upon listening to those who knew him best.  I think for me best interest is inherently linked with necessity and we haven't talked that much about that.  But it is linked to what one needs to do and I think given what David's carer believed, with all the imperfections of crystal ball gazing that consequential decision making involves I would have said that he shouldn't receive the treatment.

 

PARRY

John.

 

ROBERTSON

I think if we'd had less information about what they tried to do within the hospital setting I might have been more inclined to persuade them to go and try harder to reduce his anxiety, to familiarise him - as Tony was talking about earlier on - with the place and the whole setting.  But because of the risks of the procedure and him being agitated whilst receiving that procedure and we didn't talk also about the risks of  it all going wrong if he did disrupt it significantly.  But I think because of those I'd be inclined to agree with Deborah that it would probably break the procedure down if they tried and tried and the relationship with those carers is a crucial part of his ongoing life, however long his life is going to be.

 

PARRY

Tony.

 

HOLLAND

Yes I think I would disagree with the other two people in this in the sense that my starting point here is that this is a very serious decision which the consequence is almost certainly his death.  And I think the strategy that I would try and do is to try and work with the carers about their concern that, for example, their relationship might break down with him because of the stresses and strains.  I would look to how you can make certain that when sedation is used he doesn't wake up in the middle of the process, it is unacceptable that he woke up in the middle of the scan, there are ways of doing this that make certain he doesn't.  So I think I would start the process.  There may be a point at which you have to say it shouldn't continue, I would accept that, but I think I would give it a go.

 

PARRY

Now clearly if this had been discussed in a genuine ethics committee it would have been at much greater length, but I hope that nevertheless we've covered some of the main points. And thank you very much to all of you.

 

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/radio4 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.

 

And now let's return to real life.  What actually happened in this case?

 

PSYCHIATRIST

In the end it was decided to treat David in a palliative way, i.e. try to relieve any symptoms he might experience and treat him at home and not to treat him in an invasive way with chemotherapy.

 

PARRY

David was able to carry on his life more or less as normally with no obvious signs of distress, until two weeks before his death, five months later.

 

ENDS