Mentally Ill and Refusing Surgery

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Joan Bakewell is joined by a panel of experts to discuss the real life case of John who needs a life-saving operation, but is refusing it.

Patients have the right to refuse treatment, but John is mentally ill. He believes the operation is an elaborate conspiracy to kill him.

Without surgery, John has only a few weeks to live.

Is John's refusal valid? Should the surgeon operate without his consent? It might save John's life, but would it be in his best interests?

Joan Bakewell is joined by her panel of experts to discuss the complex ethical issues arising from this case.

Producer: Beth Eastwood.

Available now

45 minutes

Last on

Tue 20 Jul 2010 21:00

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 No. 1 - Mentally Ill

 

 

 

RADIO 4

 

 

 

 

 

TX DATE:                           TUESDAY 20TH JULY 2010 0900-0945                

 

PRESENTER:                     JOAN BAKEWELL

 

CONTRIBUTORS:               DEBORAH BOWMAN

                                          TOM SENSKY

                                          GARETH OWEN

 

PRODUCER:                       BETH EASTWOOD

 

 

 

 

 

NOT CHECKED AS BROADCAST


BAKEWELL

Increasingly our society believes in people's right to make choices for themselves.  In medical matters this focuses on the concept of informed consent.  But if such a patient is mentally ill - what then?

 

Welcome back to the series Inside the Ethics Committee.

 

Last autumn, John was in prison on remand. He had paranoid schizophrenia and was refusing his medication and as a result was suffering from delusions.  You can't receive treatment against your will in prison, you have to be in hospital.  So a forensic psychiatrist went to assess John.

 

PSYCHIATRIST

He didn't accept that he was mentally unwell and he had a lot of unusual beliefs about being the victim of a conspiracy involving the system and he mentioned that the judge was involved, the police and the prison system, the doctors - that everybody colluded in this conspiracy to get him locked up.  Of course this was not based in reality, it was part of his illness.

 

BAKEWELL

The psychiatrist decided he needed treatment so John was transferred to the psychiatric unit. This allowed him to be detained under the Mental Health Act and treated for his mental disorder without his consent

 

PSYCHIATRIST

We treated him with antipsychotic and because he refused we had to put him on a long acting injection or what we call a depo and alongside that he was allocated a key worker to meet up with him on a regular basis.  He also had access to occupational therapy activities, advocacy and arrangement of other rights and privileges which he took up in fact very well.

 

BAKEWELL

About six weeks later, with John's underlying mental illness benefiting from treatment, the psychiatrist was keen to deal with another ongoing health problem… his hoarse voice.

 

PSYCHIATRIST

We were aware before he came to hospital that he had problems with his voice.  Our colleagues in prison, in fact, referred him to hospital but he refused to be seen.  The belief that he had at the time he thought that ENT did not stand for ear, nose, throat and was standing for electro neurotherapy and his understanding is that he would be put to sleep and killed.  There isn't such a thing called electro neurotherapy.  The belief that he had was illness driven, so it was like a parallel process.  We started him on treatment - medication mainly - and at the same time we started this dialogue with him and he eventually agreed to go back to the hospital and see the surgeon.

 

SURGEON

John presented to one of our outpatient clinics at the end of last year and he came with an escort because he was currently under section and he indicated that he had a previous history of paranoid schizophrenia.  He said that his voice hadn't been quite right for the previous 12 months and that he'd started to lose it about six months prior to that.  And then over the week prior to coming to clinic his breathing had become quite noisy, he was getting quite short of breath and he was struggling to swallow.  He mentioned that he had smoked quite a lot - about 50 a day - until recently.  We looked down at his voice box, which was very narrow and quite ulcerated, and the team member who saw him decided he really ought to be admitted to our ward and then arranged to have a look around under a general anaesthetic at this very abnormal looking voice box.

 

BAKEWELL

The examination revealed a large tumour.  They removed some of the growth  so John could breathe more easily and sent samples to the lab.  Tests revealed advanced cancer.  Chemo and radiotherapy alone don't really work on such big tumours.  For a 50:50 chance of survival, the surgeon proposed something much more dramatic: an operation within the next few weeks…

 

SURGEON

We really felt the surgery would be the safest, simplest and most effective way of achieving a cure for John and that would mean removing his voice box.  We went up to the ward after our team meeting and had a chat to John.  Having explained the surgery, all the potential risks and complications, the life changing nature of the surgery, we explained that we would plan to fit a valve which would allow him to speak afterwards, he seemed very keen to go ahead and we took his consent and planned the surgery for about 10 days later.

 

BAKEWELL

John went back to the mental health unit and spoke to the psychiatrist and his advocate - a professional appointed to voice his concerns.  At that point John explained quite clearly what his medical problem was and how the surgery would help.

 

ADVOCATE

He explained that it was cancerous lump that was in his voice box and that the doctor had told him that he felt that this was quite life threatening, in the sense that it needed to come out otherwise breathing was going to become even more difficult.

 

PSYCHIATRIST

I told him that we would be all there to support him.  We were talking as if we both agreed that this was cancer and that he would go through a major operation that would have long term implications.  At that point that was the conversation I had with him.

 

BAKEWELL

But by the following day John's attitude was shifting…

 

ADVOCATE

John sort of expressed part disbelief about what was happening because it was all happening so quickly, I mean this was in a very short space of time, of sort of expressing to his psychiatrist here that he wasn't feeling well to then suddenly being informed well actually you've got to have surgery and major surgery.

 

PSYCHIATRIST

A few days later he changed his mind.  He started saying that he never had cancer and this was all a conspiracy to get him to stop smoking and possibly to kill him.  Then he started again talking about electro neurotherapy and he refused to go back and have his operation.  I made the surgeons aware of this and that they were not talking with an ordinary patient here and his judgement is clouded by beliefs related to his illness.

 

BAKEWELL

The surgeon was very concerned.  Things are very serious:  the tumour could kill John in a matter of weeks. And in the conversation they had just a few days earlier John clearly understood both the risks and the urgency.

 

SURGEON

When we were taking his consent we felt that he was quite rational, quite able to understand the information about the decision that he needed to make, he was able to retain that information and he seemed quite capable of weighing information to make a decision and then communicate that decision to us.  And they're the four parameters mentioned in the Mental Capacity Act.  And so we felt quite happy to take his consent and to agree to go ahead with the surgery.  We didn't want to make a judgement, simply based on his history of mental health problems.  He was on treatment and seemed to be quite stable to us.

 

BAKEWELL

So why has John changed his mind? Any patient is allowed to do that of course, but is John's mental illness clouding his judgement? The surgeon has a dilemma: it is quite possible that although John is clearly mentally unwell, he could be refusing the operation for sound, even rational, reasons.

 

SURGEON

Removing somebody's voice box is a huge change in people's lives, they cannot speak in the normal way and they are breathing through their neck - their windpipe is sewn to the lower part of their neck and that is the airway through which they have to breathe.  I have had people in the past who have had no history of mental health problems, have entirely good capacity refused to go ahead with it.  Therefore adding in the mental health history of John made the whole decision making process very difficult because it might have been entirely rational of him to decline surgery but we didn't really know, we really had to take advice on his capacity from the mental health team looking after him.

 

PSYCHIATRIST

When he went to see the surgeons, when they diagnosed him with cancer, he was well and then when he came back and waiting to go back again for his operation that's when he took a dip, then all the beliefs he had about the conspiracy resurfaced and as a result I think he lost his capacity.

 

BAKEWELL

Time now to discuss the story so far, with our panel of experts: with me are Deborah Bowman, Senior Lecturer in Ethics and Law at St George's, University of London; Professor Tom Sensky, Emeritus Professor in Psychological Medicine at Imperial College London, who regularly assists the official solicitor in reviewing cases where decision making is problematic and psychiatrist Dr Gareth Owen, from the Institute of Psychiatry, who researches decision-making in patients with psychiatric disorders and runs the Maudsley Philosophy Group.  So welcome everyone to the programme.

 

We've heard that John is refusing to have a life saving operation, can patients, any patient, refuse a treatment like that?  Deborah Bowman?

 

BOWMAN

Yes absolutely.  We all have the right to make a wrong decision.  What this case has thrown up is the relationship between physical and mental illness and how you can treat these patients.

 

BAKEWELL

Yes we've heard that John is mentally unwell now how does that affect his ability to refuse the operation?  Tom Sensky.

 

SENSKY

The key point is that the relationship between the decision and the mental illness has to be examined in some detail in deciding whether the person is capable of making a sound decision or not.  In this case what strikes me is the fact that when John became unwell again the themes that emerged in his discussion were exactly the same as those that were there before he was admitted and received treatment for his mental illness - the paranoid ideas about everyone conspiring to harm him, that's a marked contrast to what happened when the surgeon got his consent initially.  I think that's the key - the fact that he's become unwell again because of his mental illness which has interfered with his decision making.

 

BAKEWELL

I still need things clarifying for me.  Can you be mentally ill part of the time?

 

SENSKY

Yes you certainly can.  Mental illness is in a sense a vulnerability, serious mental illness I should say.  There are times when an individual may be very disturbed, have very disturbed ideas and other times when they're more stable.  Rather like - it's a bad analogy but I'll use it anyway - diabetes, where you have the diagnosis of diabetes and sometimes your diabetes is well controlled and sometimes it isn't.  And there are all sorts of reasons why diabetes becomes poorly controlled, in the same way as there are lots of reasons why mental illness is difficult to control.

 

BAKEWELL

So the key is whether John's mental illness is clouding his judgement and causing him to refuse the operation.  It's interesting that when he was refusing treatment for his mental disorder this ability to refuse wasn't considered and he was treated against his will.  Why was this Deborah?

 

BOWMAN

He can be compulsorily treated for his mental illness - that is what the Mental Health Act provides.  Although it's a huge piece of legislation it has provision for compulsory treatment on the grounds of protecting self or others.  But physical illness that isn't related in some sense to his mental illness is out with the boundaries of the Mental Health Act.  Therefore, you have two things going on - the compulsion under the Mental Health Act but then the question, quite rightly, by the surgeon - is he capacitous according to the Mental Capacity Act?  The fact that he's mentally ill does not necessarily define him as being incapacitous and they are right to assess his capacity.

 

BAKEWELL

Now this is your expertise Gareth where this overlaps and how you make these decisions - tell us.

 

OWEN

Well as Deborah says the Mental Health Act is specifically designed to give treatment for mental disorder.  The Mental Capacity Act is very different, it comes out of a consent tradition, with a very strong idea of the human being really as somebody who is autonomous - so called.  What you're seeing really is a kind of clash actually between two legal structures and they're kind of overlapping, at this in John, and causing some anxieties.  Here he is having compulsory treatment for his mental disorder under the Mental Health Act and that's all being done without much consideration to the issue of his capacity to decide.  Physical health treatment comes up, a very difficult physical health treatment, and all of a sudden capacity emerges as a central consideration.

 

BAKEWELL

Tom Sensky, what happens when patients refuse treatments for physical ailments that are somehow linked to their mental illness, are there examples of this?

 

SENSKY

Yes there certainly are examples, the obvious one is somebody with severe anorexia nervosa where the physical state is a consequence of the mental illness and the treatment is both of the mental illness and of the physical state that's caused by it.  And in the case the Mental Health Act allows for treatment of the whole person under those circumstances.

 

BAKEWELL

You are allowed to force feed someone then are you for anorexia?

 

SENSKY

Under those circumstances when the physical state is a consequence of the mental illness and where the treatment of the physical state is also a treatment of the mental state that's covered by the Mental Health Act.

 

BAKEWELL

But in John's case that clearly is not the case - the cancer is quite separate from his mental illness - that becomes an ethical problem for the medical team.  Is there a formula Gareth - how do you work out if he's refusal is rational or not?

 

OWEN

Well I think in this case a lot of weight is falling on the idea of his decision making capacity and there's, from what we hear, a reason to doubt it.  I mean he's really misinterpreting reality from the account we've got so far.  We have to now - to think about the law, we have to look at the capacity test as we have it.  So we heard from the surgeon that it involves an ability to understand information as it's disclosed and to retain it and to - the surgeon said weigh it but there's actually another bit which is to use it.  And that has some kind of a relationship with what psychiatrists call insight or the ability to recognise that one is ill and that the information related to the illness applies to you.  And that can sometimes be problematic in people with psychosis.

 

BAKEWELL

But how do you work that out when somebody is suffering from psychosis?

 

OWEN

Well you have to talk with them and that's the thing - somebody with a psychosis is somebody you can have a conversation with, often a very good conversation, and you can really learn I think about conditions under which they are deciding.  John, from what we hear, is believing that he doesn't have a cancer, that the surgeon isn't a surgeon, he is a practitioner of something called electro neurotherapy, which has a wonderful ring with ECT  doesn't it - electro convulsive therapy - which is a treatment that he might be more familiar with in a psychiatric setting.  So his decision making at this stage has two features I'd say - one is that it seems very persecuted and in important ways it seems to be detached from reality.

 

SENSKY

But I wonder if I could just add to this because ...

 

BAKEWELL

Tom, yes.

 

SENSKY

... the key point is the nature of the mental illness and its relationship to the decision that's required.  It's perfectly possible to be floridly unwell mentally and still be able to make very important decisions about one's physical care.  And the diagnosis is less important than the nature of the relationship between the mental illness and the decision that needs to be taken.

 

BOWMAN

But I'm very struck by the language that we're using that is about right decisions, rational decisions, medical authorities - it's a little bit problematic that I feel and do you know actually there is a question for me about whether because somebody has a mental illness their decisions are at much higher risk of being scrutinised in a way that my decision might not be.

 

BAKEWELL

Well let's go back to the case.  John, who is mentally ill, is refusing a life-saving operation and his medical team are caught in a quandary. His psychiatrist says John's refusal is being fuelled by his delusions, which are clouding his judgement and he wants to change this.

 

PSYCHIATRIST

The key priority for us was to stabilise his mental state, to make sure that this psychosis is adequately treated because we've noticed a link between the injection and this belief.  The injection was given to him fortnightly and we noticed that just a few days before the next injection the beliefs about the conspiracy would resurface again and with this he would become uncooperative with any treatment in relation to his physical health.  So we [indistinct words] that we're not giving him enough injection so we had to up the dose.  But that was another problem because he wasn't willing to have more injections.

 

BAKEWELL

Since John joined the unit a couple of months ago, the psychiatrist has been steadily increasing John's dose in the hope that it will suppress his psychotic symptoms in the days leading up to his next injection.  The recent return of his delusions suggests the dose still isn't right.  He decides to increase John's next injection further. As John is under a treatment order this is done without his consent.

 

His surgeon also consults the legal team at his trust.  They recommend that he and the psychiatrist help John understand the consequences of declining treatment and thus help him make a decision.

 

SURGEON

I had a chat with the psychiatrist and we reckoned that the simplest way of helping him understand the consequences of his decision to decline treatment was to write him a letter which sets it out very clearly as to what the consequences are.

 

I've got it here:

 

Dear John,

Further to your admission to our ward last week I'm now writing to confirm the discussion you had with me and my registrar.  You have a very advanced cancer of the voice box, if we do not operate within the next two to three weeks it is likely that the cancer will stop you breathing and you will die.  We plan to remove your voice box and some tissue in your neck with the aim of curing your cancer.  It's a big operation but many people have been through this surgery and continue to have a good quality of life.  I would strongly recommend that you undergo the surgery.

 

Then John sat down with his parents and the psychiatrist and had a discussion about options and about what John wanted to do next.

 

PSYCHIATRIST

We wanted in fact to help him to make an informed decision.  We did not want him to feel under any pressure.  We made sure that his key worker was there, the family were there to make sure that he was adequately supported in that process.  He saw the letter from the surgeon to tell him that he did have cancer and also we had a lengthy discussion about quality of life and life versus death because it was clear in that letter that this was a life and death matter, there was no time to waste, he had only a few days, in fact the surgeon made it absolutely clear if he didn't have the operation within the next two weeks he would die, it was a simple as that.  But the good news is that it is still at a stage where he can really treat it or cure it with surgery.  The family all unanimously agreed that he was still young, there was a good quality of life and we shouldn't really let him just die.

 

BAKEWELL

Back  to our panel now, at the stage where John's capacity to make decisions is fluctuating. Fluctuating capacity - now how opaque is that, what does it mean Gareth?

 

OWEN

I suppose there's several ways to formulate it.  One is - I mean is he - is his schizophrenia getting worse?  That's one possibility.  But that doesn't tend to have a very fluctuating cause.  I think the better explanation is that he's actually extremely scared and he's feeling like the rest of us would and when we feel very fearful many of us either entrust entirely in the doctor or we'll rather withdraw into ourselves and resist and protest.  And I think that's what's happening here.

 

SENSKY

But what makes it more complicated is that he refers to things like electro neurotherapy, which most of us wouldn't resort to and is an indication of the symptoms of his underlying mental illness.  I mean if he's stressed that on its own can exacerbate the mental disorder and destabilise the medication.  And of course being given this diagnosis is extremely stressful and receiving the letter that we've just heard about from the surgeon is even more stressful, so it's not surprising that there are problems.  But in terms of fluctuation, yes it's perfectly possible for a person's capacity to make decisions to fluctuate.  The Mental Capacity Act actually acknowledges that and indicates that we have to endeavour as clinicians to do everything we can to optimise a person's capacity.

 

BAKEWELL

Deborah.

 

BOWMAN

To focus on the relationship between the clinical team and John seems to me to be the only way to maximise his capacity to understand when  it might come and go, when there are times of the day that he might be better than others.  We don't know what's happened.  But for me the ethical thing is actually to focus on that relationship and build in trust and alongside that then increasing medication - it may compromise trust.  I mean the language of compliance is very different from the language of agreement and ideally that's what you'd want.

 

BAKEWELL

But there's a power issue here too isn't there - John is enormously vulnerable.

 

BOWMAN

He is exceptionally vulnerable and the surgeon said at the top that actually it was an operation that capacitous people refused, it had a huge impact on people and yet there's a very strong drive, an understandable drive, a well intentioned drive, but nonetheless a drive to make this man do what is seen to be best.

 

BAKEWELL

Now other things are going on here too.  They're trying to bring in the family to help make the decision.  Now someone who's psychotic can have very complex dealings with their own family, so how is that going to work out?  Gareth.

 

OWEN

Well the relationships with the family can be complicated but they're not always and I think it's quite often that families really do generally have the best interests of their relative at heart and it was striking to hear that they did think he was young.  So it isn't just the doctors who want to steer him towards this surgery - it seems to be that it's the family too from what I could pick up.  But I think the surgeon and the psychiatrist have to be congratulated actually by bringing the family in like this and broadening it out.

 

BOWMAN

Just a note of caution:  it is easy to assume about family relationships and there are issues about confidentiality which clearly if someone doesn't have capacity may look different but involving third parties is not always as right as it might appear.

 

SENSKY

We need to distinguish between the family's knowledge of his own views when he's well and their views for his benefit.  I think those two are often confused but are terribly important to distinguish because in terms of the clinicians involved they'll really want initially to know what he would have wanted were he well.

 

BAKEWELL

What about the letter?  This is a curious way of furthering understanding because it seemed so absolute.  Deborah, what do you make of this?

 

BOWMAN    

Written information is often given to people but usually as a support for a consultation, rather than the mode of communicating what is really very stark and bleak news. 

 

BAKEWELL

On the other hand the letter is a bold attempt to set out very clearly to John what the situation is.  Gareth.

 

OWEN

I think it's very hard to judge the letter and whether that was a good intervention or not.  I think really to answer that you'd have to know who is John and what's he like.  I'm not sure we really know.  But one way of perhaps getting inside what it is like to have difficulties deciding for John is that imagine reading that letter and just thinking that it doesn't apply to you, that it's just a lie.

 

BOWMAN

John reads that letter and says here's more evidence of the conspiracy.  That's really hard because you can sympathise with the team who are trying to put their point of view on record perhaps.

 

SENSKY

They're trying to communicate with John in a variety of different ways.  But personally I'm not sure that this letter as it was drafted is helpful because as Gareth says the key point is about John as a person, rather than about the prognosis of tumours in the throat and so on.

 

BAKEWELL

Well we go back now to our story.  We're at the stage where family, surgeon, psychiatrist all think that John, who's mentally ill, should have the operation to have his voice box removed.  But what about John himself?  Things are changing in his mind, too..

 

PSYCHIATRIST

He started having difficulties with his breathing because simply the tumour was getting bigger and bigger and basically obstructing the airways.  Then also mentally he was getting out of psychosis, he was becoming better because he received his injection a day or two before that.  So all of these in fact helped him to make a decision to go for the operation.

 

ADVOCATE

John sort of expressed to me afterwards - okay, I think I have more information now, I feel I can agree to this based on I will trust the people that are responsible for my care to make the right decision.

 

BAKEWELL

But even then it is not all straightforward…

 

SURGEON

In my discussion with the psychiatrist after that meeting he did again indicate that John might change his mind again because his capacity at that time was fluctuating.  So we were left in the position of now having John agree to go ahead with surgery, which was just in a few days time, but that he might change his mind again.

 

BAKEWELL

Given his fluctuating mental health and capacity, the psychiatrist is anxious that everything is done to keep John informed about what he has agreed to. He is transferred over to the surgical team two days before his op.

 

PSYCHIATRIST

We sent him over with two members of our staff to be there to support him to make sure that he's okay and the surgeons also gave him as much information as possible to allow him to absorb, to understand and to weigh and then make a judgement.

 

ADVOCATE

The acceptance of needing to have the operation aside I think there was still a disbelief - crickey I've actually got cancer.  And I think there was no time for him really to process that.  I think people were asking how he felt about it and John's response often was just shrug his shoulders because I genuinely don't think he can find the words.

 

BAKEWELL

If John gets ill again, loses his capacity and again refuses the operation, the law says the surgeon will to need to act - quote "in the patient's best interests".  But is going ahead with the operation in John's best interests? Who decides?  After all many people with no mental illness at all decide to refuse it.

 

SURGEON

The situation we faced as surgeons is that we weren't just carrying out a lump and bump surgery or something minor, we were carrying out a major life changing operation on this chap.  And you could argue that although we would potentially save his life was that really in his best interests when he's lost his voice because it's more than just minor surgery?  And that for me is quite a big consideration.

 

BAKEWELL

Even if John continues to consent in the run up to the operation, the psychiatrist has yet another concern.

 

PSYCHIATRIST

The biggest anxiety for me and I can link it to that of the surgeon who will say now he is well now and he might well agree to have the operation but my biggest anxiety is that he might wake up the day after the operation without a voice box and then he would say I've never consented to this, this was all part of the conspiracy.  That was my biggest anxiety.

 

BAKEWELL

The trust lawyers advising the surgeon recommend that John sign an Advance Decision - something also known as an Advance Directive.  This is a document that enables John to express his will for the operation to go ahead even if he becomes ill and loses his capacity again.

 

SURGEON

If we acted in his best interests and carried out the surgery and then John had turned round to us afterwards and said I didn't give my consent for this, I didn't want surgery, you acted against my will, I think if we had an Advance Directive from him it would help us explain to him why we had gone ahead.  The Mental Capacity Act does indicate that you need to take into account a person's previous or current wishes and I think an Advance Directive would help in that.

 

PSYCHIATRIST

We've explained all that to John and he was not interested in making one.  Even if he had agreed the advice we've received from the lawyers that this wasn't really the safest way of dealing with this because simply the operation was a major operation.

 

BAKEWELL

So John is agreeing to the operation, but won't sign the Advance Decision.   Should the surgeon go ahead anyway?

 

SURGEON

We were concerned about what we would actually do if he did refuse to go ahead.  On that day that we had planned we probably wouldn't push the matter.  But we were concerned that a few days after that he would have admitted to the emergency department of the hospital unable to breathe.

 

PSYCHIATRIST

Death was inevitable.  That's the last thing I wanted to see - a man relatively young, got good quality of life, simply because he had ideas about the operation driven by illness would be just a shame to really let him die.  We didn't have really much time.

 

SURGEON

We were very much on tenterhooks waiting to see if he would change his mind again and decline the surgery.

 

BAKEWELL

Right our discussion once again.  Things are getting critical: the operation is urgent and the surgical team must decide whether it's in John's best interests to go ahead.  How can do you decide what's in John's best interests Gareth?

 

OWEN

Well the situation's difficult, I mean I'm still - want to keep on this thing of anxiety and the pressure of time as significant factors here.  I mean it does seem to me that if one could try to relieve this anxiety and this pressure of time one could tone down the sort of ethical tension that we're experiencing at the moment, which seems to me very much around coercion, so the bottom line really is are we going to force John to have this surgery or not?  That is a very striking ethical tension I think.

 

BAKEWELL

But we can't do this can we - we're faced with an emergency.

 

OWEN

Is it an emergency?

 

BAKEWELL

And he's got a cancer that will kill him within a few weeks.

 

OWEN

Yeah, so the timeframe is not seconds or hours, as some medical decisions can be, you've at least got days.

 

BAKEWELL

Deborah.

 

BOWMAN

I think it's striking that we've seemed to have ended up in a situation where the surgeon's not sure that surgery's in his best interests but the psychiatrist thinks it probably is.  We have two extremely expert professionals disagreeing.  I think what also comes out is that the surgeon is taking a more nuanced perspective and saying actually it's not just about saving this man's life, it's about the quality of life thereafter.  Whereas the psychiatrist and the family, from what we've heard, take a more stark life preserving, life saving, approach, i.e. that it is always in your best interests to be alive rather than dead irrespective of suffering.  And actually that's not necessarily an unproblematic view in ethics, many ethical debates turn on the issue of quality of life.

 

BAKEWELL

We turn to you Tom and tell you that there is something else that we do know about him Tom - we know that he's had schizophrenia for 20 years but for 15 years he's been living independently with this illness, he's only recently got in trouble with the law and it's quite a new departure in his life and he's had a good quality of life over that time.  Knowing all that how does that affect what the surgeon's judgement should be?

 

SENSKY

In principle it makes it more likely that a life preserving operation should be considered seriously but it comes back to the things that are important to John. The fact that he's been living independently doesn't tell us much about what's particularly important.  For example, if, say, he enjoys reading books or listening to music and that's a key aspect of his life he can do that after the operation.  On the other hand, if what he does every day is go to a social centre or to the pub and mix with people then it might be much harder to adjust to the effects of the operation.  And it's those sorts of consideration that we have to try and balance in working out what the best interests are.

 

BAKEWELL

Gareth.

 

OWEN

The other question is whether or not this tricky issue of coercion can be modified in some way by trying to reduce the tensions and the anxieties surrounding this decision.  And one does wonder whether or not there is a place to try to find somebody he trusts to discuss with him and to guide him towards an outcome which we probably all want, which is that he does have a treatment that's curative.  One could also think about other kinds of clinical interventions - the role of drugs that will reduce his level of anxiety but also perhaps small acts that could make him feel less persecuted, if he is feeling persecuted now.  And I'm reminded of this rather similar situation of somebody with schizophrenia who did feel very persecuted by the hospital and the doctors around him and one of the doctors picked up that there was one thing that he really did like which was nice shirts from Kilburn.  And they arranged for him to have one and it turned the situation around.  So some of these ethical tensions or dilemmas which we can feel very acutely, particularly around coercion can be modified with creative clinical interventions.  And I just wonder, I don't know, whether there's scope here.

 

BAKEWELL

Can I just ask the question which I feel that people listening to the programme will be screaming to ask, which is:  Isn't it better to be alive than to be dead?

 

BOWMAN

Not necessarily.

 

BAKEWELL

Please enlarge on that.

 

BOWMAN

I think lots of people choose that a life with pain, a life with severe impairment, a life with - a life in loneliness even may not, for them, be a life worth living.  And I think the difficulty is not whether it's always better to be alive than dead but whether an individual believes it is better for them to be alive or dead - that's [indistinct words].  Now the difficulty here is that John may or may not be able to make that judgement.  But what I did think was interesting was on the clip we heard the psychiatrist said he may change his mind because his capacity fluctuates, he may change his mind and that may have nothing to do with fluctuating capacity.

 

BAKEWELL

But it's your discipline too Tom, isn't it, to talk about suffering too and to in some way estimate suffering, it is such an elusive definition.

 

SENSKY

Well it appears elusive because we use it so loosely - we talk about suffering a cold and suffering famine.  But the definition I think which is most helpful is to see suffering as a threat to the way the individual sees him or herself, the core of the individual.  So if there's a threat due to an illness that makes that individual vulnerable to lose bits of him or herself that are important then suffering is greater.

 

BAKEWELL

You're speaking of bits of themselves being part of their identity?

 

SENSKY

It's more than identity - every aspect of the self.  It could be social roles, it could be relationships, aspirations - all of these things.

 

BAKEWELL

Suppose John had signed the Advance Decision would that have sorted everything out, if he'd signed it, would we be in the clear then, would there be an issue?

 

BOWMAN

Yes there would be an issue and no it wouldn't have sorted it out.  There are all sorts of complications that I can foresee with that, not least that there are doubts about his capacity and yet he - is assumed that he might get to the point where he could sign an Advance Statement - Advance Statements have to be very specific so it would have to be very clear.  And I think the other issue is that it's by no means clear that this is in his best interest, this surgery, and that doesn't change simply because you deal with - try to deal with it sooner.  To me it's a slightly odd red herring in this.

 

BAKEWELL

What do you feel about that Gareth?

 

OWEN

I agree with Deborah.  My worry is that it's ramping up this sense that John's feeling coerced and I think that's actually exacerbating the situation rather than helping it.

 

BOWMAN

One of the key criteria for Advance Directives is that they're made voluntarily.  Having someone stick one under your nose and say sign it, it'll make this easier is not really voluntary.

 

BAKEWELL 

One feels that the entire medical team are under enormous stress too in making these decisions.

 

SENSKY

It's enormously difficult.  I wondered when I saw the case initially whether the Advance Decision was really more for the benefit of the surgical team than for the patient because of their concern about getting it right.

 

BAKEWELL

It's decision time for you now.  You've heard as much as you're going to hear about this case and you've seen how tangled it is and I want to know what would your advice be to the ethics committee.  Deborah Bowman:

 

BOWMAN

My advice I think would actually be to perhaps shift the focus, think a little bit about trust, about getting to know this man, about what a good decision might look like irrespective of outcome.  And I think understandably it has become so focused on tests of capacity and deciding or not deciding and for me there is also a real need, I think, for a truly multidisciplinary approach.

 

BAKEWELL

Would you advise them to go ahead?

 

BOWMAN

To me that's got to be predicated on that process.  At the moment I don't feel I could say go ahead because I don't feel that there is sufficient trust and I don't feel particularly that the decision has been as thorough as it might be.

 

BAKEWELL

Tom Sensky:

 

SENSKY

It would be important to get as much information as we can about John as an individual and his needs and wants.  And it may be that some of that information is there already.  I'm not saying that we necessarily have to start the process again, it's just on the basis of the information we've got.  It's too early to say.

 

BAKEWELL

And Dr Gareth Owen:

 

OWEN

Having worked in the NHS for some years I can say that when you work there you always feel the pressure of time.  And the question is really whether this is an illusion or not, we have to clarify this, I think we need to really get from the surgeon an idea of how much time we've got before this intervention stops being curative.  And I agree with what's been said by Deborah and Tom, except perhaps with the caveat that I think the issue of trust has a complex relationship with the mental illness itself and that's the rub of this case.

 

BAKEWELL

Well thank you everyone for your advice.

 

So what happened to John?

 

On the morning of the planned operation, the surgeon asked John again if he wanted to go ahead.  He went through the consent form again and John decided for himself to go ahead.

 

The surgeon removed his voice box and created a hole in his neck through which he could breathe.  John recovered on the ward for a couple of weeks.  He now has a speaking valve fitted in his neck and has started to use his new voice. 

 

JOHN

I feel it's given me a new lease of life because I couldn't carry on the way it was - not being able to breathe.  It never ceases to amaze me how well I speak and now it's happened I was able to speak more or less straightaway.

 

BAKEWELL

John can now speak out using his new voice to tell us what was going on inside his head at the time, and how he was finally able to decide for himself.

 

JOHN

It never sank in what he was saying to me.  It would take six months intensive counselling really to get it through to me.  It was just words, words, words.  When she said sign the consent form I didn't really know what that meant.  And I was worried about the consent form afterwards, I thought I had committed myself to something and I thought it was all a conspiracy to kill me in effect.  The psychiatrist did say to me someone else would have to make the decision because I was changing my mind but I made the decision on my own, in the end.

 

ENDS

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