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INSIDE THE ETHICS COMMITTEE

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Programme no. 2 - Transplant

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RADIO 4

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TX DATE:听听听听听听听听听听听听听听听听听 THURSDAY 23RD JULY 2009听 0900-0945听听听听听听听听听听听听听听听听听听听听听听听

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PRESENTER:听听听听听听听听听听 JOAN BAKEWELL听

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CONTRIBUTORS:听听 JOHN FORSYTHE

听听听听听听听听听听听听听听听听听听听听听听听听听听听听听听DEBORAH BOWMAN

听听听听听听听听听听听听听听听听听听听听听听听听听听听听听听 FIONA LOUD听听听听听听听听听听

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PRODUCER:听听听听听听听听听听听听BETH EASTWOOD听

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NOT CHECKED AS BROADCAST

BAKEWELL

Medical progress is throwing up ethical dilemmas every week:听 so welcome to Inside The Ethics Committee, the series that explores how life and death medical decisions are made, by unfolding the tale of one specific situation that really happened.

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Today's example concerns organ transplants:听 There are now around 2,000 kidney transplants a year in the UK,听 with more living donors coming forward every year but still a desperate need for cadaver donors.听 So who is eligible for a transplant?听 Are some conditions just too risky to make it a possibility? And given that kidneys are in short supply, how are choices made?

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Charlotte has Antiphospholipid Syndrome or 'sticky blood', a condition where her blood has a tendency to form clots in her blood vessels - clots in the leg can lead to deep vein thrombosis, and in the brain they can cause a stroke. It was at the age of 26, on her first date with Robert听 that she had a serious crisis.

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ROBERT

I first became aware of Charlotte's sticky blood on our first date.听 She challenged me to tennis and I was pretty sure I was four-one up in the first and she turned round and she said - Oh I think we're going to have to stop, I think I've got a blood clot.听 And I went yeah what ever.听 And she said - No I'm serious.

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BAKEWELL

It was indeed serious and the second time it had happened. Charlotte and Robert rushed to the hospital where the condition was diagnosed. They married the next year and throughout their marriage Charlotte took an anti-clotting medication every day to thin her blood and prevent these dangerous clots from forming. But听 she had a severe form of the disease and it was a constant challenge to keep the blood at the right consistency - she was walking a daily tightrope to avoid clots on the one hand and bleeding on the other.

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Despite incidents like the one Robert witnessed when they'd听 first met, Charlotte remained relatively well until 1990.听 But then - as she turned 30 - she听 became pregnant and at about 23 weeks her sticky blood condition suddenly worsened.

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ROBERT

She was rushed into hospital.听 She had blood clots in her kidneys and our little girl was stillborn.听 So it was just quite raw and she was a week in intensive care.听 And that's when our life changed very dramatically.

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BAKEWELL

Charlotte's kidneys had failed and she was put on dialysis.

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ROBERT

Fluid is sort of sieved to take out the poisons on a sort of 10-12 hour cycle.听 This can be done in bed, it's done every day but of course everything had to be sterile and she was exhausted, she was just a shell of what she was and I really mean that and it affected things like her memory, her sharpness, she's a very bright girl and she was very changed.听 But we didn't have any children so it was just a question of buckling down and getting on with it and it was great to be alive.

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BAKEWELL

For the next few years Charlotte's kidney function improved, and she was even able to come off dialysis.听 But eventually both kidneys failed completely.

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ROBERT

As they were failing we went to Tuscany for a long weekend.听 Charlotte has no memory of that trip at all.听 And we got back from Tuscany and she was immediately put back on dialysis.

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BAKEWELL

Her kidney specialist faced the first of many dilemmas.

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DOCTOR

The prognosis for patients, particularly young patients like Charlotte, on long term dialysis was really quite poor so with her medical problems and the cumulative effect of kidney failure which is never relieved entirely adequately by dialysis, unfortunately, her life expectancy but also her quality of life was significantly diminished.

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ROBERT

I was immediately thinking well you know we can have a transplant, it's fairly common these days, there's a get out of jail here.听 So I was quite up about it.

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DOCTOR

The best treatment of kidney failure is a transplant kidney.听 Patients who are transplanted do have not only a better quality of life but also an extended life to comparative patients that remain on dialysis.听 So there's a strong imperative, if possible, to transplant patients like Charlotte.

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BAKEWELL

But her illness meant things weren't as straightforward as Robert had hoped.听 Because she was taking blood thinning medication for her condition connecting any new kidney to her own blood supply would put her at a high risk of bleeding and even death during the operation itself. To try to minimise this, she'd need to be taken off her blood thinning medication.听 The team would therefore need to know exactly when the transplant was going to take place.听 But the availability of a kidney from a deceased donor was and still is entirely unpredictable. The transplant coordinator - one of the renal team - takes up the story.

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TRANSPLANT COORDINATOR

You have no way of foreseeing when your number will come up - it's like playing the lottery.听 And so for a patient like Charlotte this would have been very challenging because there would have been no opportunity whatsoever to put in place any of the very complex plans that would have safeguarded as much as possible her future after the transplant.听 So we were faced with the option of wanting to proceed with a transplant but not being clear how we could actually achieve it.

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BAKEWELL

They also had to consider the fact that cadaver kidneys were in short supply.

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DOCTOR

The worldwide experience at the time of transplanting such patients show quite considerable loss of kidneys quite early on in these patients compared to patients transplanted for other causes.听 So our concern was both for Charlotte in terms of her risk which would either be that of catastrophic thrombosis or catastrophic bleeding and a risk to the precious kidney, a limited resource.

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BAKEWELL

Should Charlotte be put on the cadaver donor waiting list? Time to consult our panel:听 they are John Forsythe Director of Transplant Services at the Royal Infirmary of Edinburgh, who has written and lectured about the ethics of transplants.听 He has been President and Secretary of the British Transplantation Society and is currently a Council Member of the European Society for Organ Transplantation.听 Fiona Loud
who has herself received a kidney transplant, that was three years ago now,听 and for the last two years has been chair of The Kidney Alliance which represents the main kidney charities, both patients and professionals.听 And Deborah Bowman, Senior Lecturer in Medical Ethics and Law at St George's Hospital at the University of London.

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So how do you qualify for a cadaver transplant?听 John.

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FORSYTHE

First of all you have to get on to the list in the first place and that's largely a clinical decision, that is largely how fit you are and is it the best treatment.

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BAKEWELL

But then that list has its own internal priorities and what are those?

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FORSYTHE

There is then an allocation sequence, largely based on how well matched a kidney is to you.听 There may be, let's say, 10 or 12 people who have that same match and the decision as to who receives the kidney is based on an objective points scoring system which is based on a number of different things - age is one of those things.

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BAKEWELL

And would a child have a better chance?

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FORSYTHE

The allocation sequence does favour children.

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BAKEWELL

Now this sounds as though there are lots of ethical considerations sneaking in here Deborah.

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BOWMAN

There are, I mean one might say well age is significant because children might need a second transplant, for example, younger people have longer to go with their transplant.听 So it's clinical.听 But of course we are making a judgement there.听 I think the point that there isn't an automatic cut off is very important and that we retain the idea that it's individuals.听 I think also there's something about transparency of process which may make difficult ethical judgements fair or fairer because it's demonstrably applicable to everybody.听 And so I think it may not be perfect but there might be ethical practice which is imperfect but acceptable.

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FORSYTHE

For Charlotte it's a particularly difficult process.听 Would the best treatment be a transplant or would it be actually remaining on dialysis because there are pros and cons to both?听 But secondly, I guess, the ethical dimension to it is something that's very different.听 As doctors nearly all the time the best thing that we can do is look after the patient in front of us.听 This is a slightly different situation because we do have an awareness of all the other people who are on the waiting list.听 The likely success of this transplant or in this case, as we've heard, perhaps the likely failure of this transplant and therefore the best use of this vital and precious resource - very, very difficult decision.

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BAKEWELL

Fiona, what was your story when you were hoping for a transplant?

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LOUD

Well I spent some time waiting for a transplant - I was five years on kidney dialysis.听 And at one point during that five years I became rather ill and I was not able to stay on the transplant list.听 I actually understood why I couldn't be on the transplant list.

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BAKEWELL

But how did you feel?

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LOUD

How I felt, of course, was absolutely traumatised and very, very, very sad.听 I think many patients find it very difficult to understand, and their families, why somebody isn't on the list.听 I was lucky, it was quite clear to me why I wasn't on the list, but I spent a long time campaigning to go back on the list again.

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BAKEWELL

Now there must be other considerations John that sneak into your mind.听 I'm thinking of the George Best situation when George Best was given a transplant, knowing that he'd damaged his liver by drinking and indeed subsequently damaged it again.听 Now how are those considerations weighed up - it involves the concept of being a deserving patient?

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FORSYTHE

We probably shouldn't be going out to punish people but if the fact that you have done something in your past is likely to recur in the future and you're likely to damage your very precious organ then that should be something that would make us stop and take very careful decisions.

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BAKEWELL

Deborah, we've talked about justice and presumably you have a take on that.听 Do people have a right to a kidney, a right to claim a place on a list?

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BOWMAN

No, I think the language of rights is unhelpful, apart from anything else if we start thinking like that we may then get into all sorts of knots about whether or not there is a responsibility to donate upon us and that would take us down other interesting avenues.听 The challenge really is about looking at individuals but within the context of a consistent system, a system that looks out for people, for people who are vulnerable but doesn't make differential decisions based on the moral worthiness or otherwise of somebody's behaviour.听 And I think when you were talking about the deserving patient or the patient who doesn't take risks with his or her health I think we have to be very careful, we all take risks - parents go off and ski, that too is a risky behaviour, we tend not to stop them from doing it.听 So I think I would absolutely agree with John on this that looking at clinical risk, i.e. whether it's in this patient's best interest, is very different morally from looking at personal responsibility and lifestyle.

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BAKEWELL

Given what you've been telling me then where does Charlotte fit into this situation John?

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FORSYTH

The decision for Charlotte was made some years ago and at that time, given the problems both for her and also for the best use of a precious organ, I probably would not have included her on the cadaveric list.

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BAKEWELL

And Deborah, what do you think?

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BOWMAN

It's terribly important that these organs are used appropriately and we know that in Charlotte's case, unfortunately, it would have been really very difficult to achieve a desirable outcome.

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BAKEWELL

Well Charlotte's medical team decided that it wouldn't be fair to use a scarce resource to give a precious cadaver kidney to such a high risk patient, so Charlotte wasn't put on the cadaver donor waiting list.听

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ROBERT

The renal team came on the scene at the hospital and I with sort of boyish enthusiasm talked to them about the possibility of a transplant and the exact words were - it would be a very brave surgeon who would put a knife in your wife.听 And I sort of half smiled and he said - No I'm serious, no surgeon would transplant your wife.听 And that was a bit of a hammer blow.听 When Charlotte heard them say that she would not be considered for a transplant it was just another layer of disappointment, there's no point in pretending otherwise.

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BAKEWELL

So Charlotte went back to life as usual on dialysis.听 Meanwhile the medical team hadn't given up on her.听 They started to think about ways around the problem.

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DOCTOR

We were quite clear that the best outcome for Charlotte would be transplantation, so we started to think through well what could we do.听 And one of the discussions we had at the time was around if it was possible to control a number of factors then we could offer Charlotte a much better success rate for a transplant.

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ROBERT

I had ruled out the prospect of a transplant, I mean those words were quite clearly carved into my brain - it'll be a brave surgeon.听 And then Charlotte came back from the renal clinic and said they're talking about a possible transplant for me.听 I was really very surprised of course and I said - [indistinct words].听 And she said - No it would be a live donation but it's risky and anyhow we have to find an organ that matches.听 And I was quite excited about that.听 Charlotte was very wary because she was just much more aware of the hurdles that had to be overcome.

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BAKEWELL

So what were these hurdles?

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Kidney transplant operations carry a high risk of bleeding because the transplanted kidney has to be connected up to the recipient's artery and vein.听 Charlotte's medication for her sticky blood condition would magnify this risk and she could bleed to death on the table.听

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To reduce this possibility,听 you'll recall听 the doctors would need to remove the blood thinning medication days before the operation and keep her off it throughout the transplant itself.听 The problem with this strategy was that her sticky blood condition would then听 be out of control, exposing Charlotte again to the risk of life threatening blood clots or thromboses.听 The responsibility for Charlotte's life during the operation would lie with the surgeon: it was for him to weigh up the risks.

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SURGEON

We had to accept that there was a risk of thrombosis during the operation, not only of the transplant but of other organs, for example her brain, her liver.听 And then very quickly after the operation we would have to re-thin the blood.听 We would have to accept that there was an increased risk of bleeding in the post-transplant period.听 It's difficult to estimate what the risk is but it's in the order of 30% risk of severe bleeding, which would require a return to the operating theatre for life saving surgery.听 There's also the risk of death from complications, such as bleeding or even clotting during the operation in the order of about 5%.听 For an average transplant patient it's in the order of 1%, so it's at least five times higher than that.听 So it really was on the knife edge.

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ROBERT

I remember saying I don't like those odds and I gamble.听 And they said - Well it's much higher than a normal operation and it would be irresponsible for us not to tell you that.

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BAKEWELL

Aside from the operation itself, a transplant would only be feasible for Charlotte if she was well enough to undergo surgery.听听 She had previously suffered a bleed in her stomach and a clot in her brain, requiring brain surgery.听 Any further setbacks might ruin her chances.听

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Any living听 kidney would need to be a match to Charlotte.听 Family members are听 usually the first port of call and Charlotte wrote to her siblings. Her mother offered but Charlotte felt uncomfortable about accepting from a parent, particularly as her mother was quite elderly. Her husband Robert asked to be tested, really to set听 the ball rolling and encourage blood relations to come forward.

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ROBERT

And then I got a phone call saying good news, I said - What's the good news?听 And they said - We've got a perfect match.听 And I was almost baffled as to who this perfect match was.听 And then it was pointed out that it was me.听 It was a bit weird because obviously I was fundamentally delighted and quite quickly one sort of thought of all the benefits, an opportunity to do something useful whenever in life you generally don't have that many opportunities.听 At the same time I'm thinking Charlotte and I are going to be married for the next 70 years this is a really good investment.听 But at the same time I was really up for the chop here.听 They were going to take my organ out and put it into Charlotte and I mean I just don't do pain and I was a bit taken aback actually and so my smile was semi-fixed on my face.

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BAKEWELL

He was the only available donor for Charlotte.听 So the team were then concerned that Robert might feel that he had no choice but to give his kidney.

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TRANSPLANT COORDINATOR

It's important that any donor who proceeds to a donation does so being able to give absolutely free and voluntary consent.听 It was our responsibility to him, if you like, to make sure that he understood that he could withdraw from this process at any time.听 I think that's a very easy thing to say and I think it's a very difficult thing for somebody in Robert's position to actually do.

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BAKEWELL

If Robert decided to donate his kidney, it would need to be in a very good condition so it had the best chance of working in Charlotte. So he was put through a battery of medical tests.

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Robert was also assessed to check whether he was fit enough to undergo surgery.听 While Charlotte's operation would be extremely high risk, removing Robert's kidney under general anaesthetic would not be risk free.

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TRANSPLANT COORDINATOR

The worst thing we can possibly do is to create a patient out of a donor.听 And so we need to be absolutely clear and sometimes that can be very frustrating for donors going through the evaluation process because many of them just really want to get on with it.听 And of course it's not just physical tests that are important, it's also the psychological and mental health.

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BAKEWELL

Robert would be giving away one of his two kidneys.听 Was it the best use of what is in effect a precious resource, when there was a high chance the kidney would fail when it was transplanted into Charlotte?

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DOCTOR

The prevailing opinion in the transplant community was that high risk patients, such as Charlotte, where there is potential risk of graft loss, should probably not be transplanted from living donors because that risk might be considered unacceptable to the donor and could be conceived as unethical.

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BAKEWELL

At this point let's go back to our panel.听 Well living donors - who can donate John?

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FORSYTHE

Largely these days across the board really.听 If somebody has decided that they have some form of relationship with an individual who is a patient then there are checks and balances within their local unit but there is also regulation.听 It is much more widespread now than it was a number of years ago.

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BAKEWELL

Deborah, has it changed much in the last 10 years?

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BOWMAN

Yes it's changed significantly.听 At the time when Charlotte and her husband were going through this process there was an organisation known as the Unrelated Live Transplant Regulatory Authority or ULTRA for short and this was a body that was specifically set up to scrutinise potential donation relationships between people who weren't related.听 By not being related that was not a blood relation, so a spouse, a partner, a friend or indeed some other variations.

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BAKEWELL

Now you were on this panel weren't you?

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BOWMAN

I was for about three years yes.

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BAKEWELL

And it sprang from the scandal of people buying organs and the trade in organs and it was an attempt to control that.

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BOWMAN

The first statement was to make it a criminal offence to offer any inducement or payment but the second aim was to ensure that people were giving voluntarily.听 And there was a perception that people who weren't related were more likely to be subject to some sort of pressure to donate.听 I actually don't agree with that.

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BAKEWELL

Well Fiona, you had a kidney from your husband, so tell me what that experience was like for both of you.

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LOUD

When we discovered that my husband was actually a very, very good donor, just as Robert was, and also that nobody in my family was eligible to donate because of an ongoing genetic condition I actually never considered that he might feel under pressure, as being the only one who could do it.

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BAKEWELL

You took it for granted.

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LOUD

Well I wouldn't say that at all because I had waited for three or four years for him to even come forward and offer.听 I wasn't getting any better, so it was his choice to say I think it's now the time for me to offer.听 And we had to have some very long and meaningful discussions about what that would mean to our family and the responsibilities there.

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BAKEWELL

Can you give me some flavour of that conversation because it was the most - at the very heart of your marriage and your relationship?

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LOUD

It was indeed and he said to me - I actually feel that this is the obvious and the right thing to do.听 He said - I don't feel any doubt at all in doing this.听 And he tried to paint it to me that he was being selfish, which of course wasn't true at all but he said - I don't want to grow old alone and I want you to be with me for the rest of our lives.

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BAKEWELL

Suppose you're a donor and you've been found to be a match but you haven't got the nerve to go through with it, can you keep your refusal, as it were, secret?

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FORSYTHE

Oh that's a very, very difficult one.听 In each of the occasions when I've come across this, and I have come across it, I have found ways to get the potential donor out of it.听 And it's been tough sometimes.

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BAKEWELL

Now this matter of a living donor, giving a kidney that's a very precious resource to somebody with a high risk as a recipient, what would you advise?

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BOWMAN

The way of looking at it for me is about consent and it's about well actually have they got, individually and perhaps collectively, a realistic understanding of the likely or possible or probable outcomes, which clearly are different for this particular couple.

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BAKEWELL

Fiona, were you counselled and was it made clear to you over and over the balance of judgements being made?

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LOUD

Yes indeed we had counselling, we spoke to a number of people, we had some time to think about it really.听 I had to think can I accept that responsibility for someone doing that for me because he will save my life and there's no words to show gratitude for that and the responsibility of him having major surgery - and that was a big concern to me and I felt guilty about it, I still do actually.

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BAKEWELL

Well let's go back to the case and hear the transplant coordinator but first let's hear from Robert.

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ROBERT

Once we got used to the idea that a transplant was feasible and that we had a donor then we had to deal with an additional issue, which was our son, who was around four or five at the time.听 And we were both going to be under general anaesthetic, if neither of us wake up what sort of situation are we leaving him in?听 And Charlotte dies, he won't have a mum anymore, you then have to think well maybe it's better to have a mum who's on dialysis but basically can be a mum rather than not have one at all.

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TRANSPLANT COORDINATOR

But counted against that without a good functioning transplant Charlotte may not be available for him during his formative years either.听 So for them the decision about proceeding with the transplant was as much about safeguarding his quality of life as it was theirs.

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ROBERT

It was something that we thought about and discussed through with the medical team - that whole dilemma with our son because it wasn't just about us.听 And in the end that was Charlotte's decision.

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BAKEWELL

The medical team was still very worried about the idea of operating on Charlotte at all but they had an idea.听 A technique had been developed that could reduce the risk of clots forming in Charlotte's blood during the operation.听 It had been used in other situations but never before in a transplant.听 As Charlotte's doctor recalls this would be at the very frontier of medical research.

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DOCTOR

The use of an experimental or new technique in a patient or a technique that hasn't been used for a particular indication before is difficult.听 So we formed a group to discuss this to decide whether this was a reasonable thing to do.

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TRANSPLANT COORDINATOR

Very early on I think this couple made the decision that if it was going to be possible that they would do it.听 The dilemma was whether or not it was appropriate for us to intervene and make it happen.

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BAKEWELL

We are now nearer the brink of ethical thinking.听 Is it appropriate to use a technique that hasn't been through a clinical trial to try to improve Charlotte's chances of surviving the operation?听 Back to our panel.听 Right, what are the ethical issues surrounding the situation now John?

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FORSYTHE

I feel that transplantation is famous for having been involved in many pioneering principles and I feel that if you are allowing the chances of this life saving transplantation to improve at all then that is a reasonable thing to do, provided that the information that you have has been shared fully with Charlotte and with Robert.听 The information sharing with this couple seems to have been exemplary.

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BAKEWELL

Deborah, what's the situation from your point of view?

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BOWMAN

Talking to renal colleagues of mine at St George's one of the things they often say is that it's very hard to get good evidence because patients will often have unusual conditions, you are often in unusual circumstances.听 So I think you know one might be working in a specialty where that gold standard of evidence is different.听 So that might be the first thing.听 The second thing I'm interested in, and it picks up on what John was saying, is about the information - what information is held by the team, so it's up to them to decide whether or not even to offer it, or whether it's all cards on the table right from the start.听 So I think the point at which the patient is involved is a very interesting ethical issue.

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BAKEWELL

There is another issue of course which has been raised Fiona, which is that of their concern about their child.听 And you indeed had to take that into consideration yourself.

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LOUD

Yes we did indeed.听 Our children had never known me being well and for them the idea of me going under some further surgery was not unusual.听 But the idea of their father going under surgery was absolutely unusual and the thought of us both having to go under surgery at the same time was frankly terrifying for them.

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BAKEWELL

Were they able to articulate these fears?

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LOUD

I think they were 11 and 13 at the time.听 The 13 year old she was able to articulate them perhaps more than my son.听 They understood though why we were planning to do it, they had also seen me spend many years on dialysis and they did support the idea of me improving and being able to be a mum to them.

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BAKEWELL

John, for medical teams do considerations of children, the appalling life experience of people on dialysis, sway judgements?

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FORSYTHE

I'm a passionate enthusiast for transplantation and I'd love to be able to transplant everybody but I realise that because of the shortage of organs that that is not possible.听 You know today across the UK there are about 8,000 people waiting for a life saving transplant.

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BAKEWELL

I'm going to ask you your thoughts on the ethical choices in a moment but is this an appropriate subject to be referred to a hospital ethics committee - is that likely to happen Deborah?

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BOWMAN

It's certainly an appropriate subject but actually because of the way renal medicine works I would say it's one of the most ethically sophisticated specialties out there.听 The Human Tissue Act provides for independent assessment of proposed transplants and ethical issues are an integral part of that.听 Teams are very well used to hearing patients stories, to providing information and I would say actually often renal medicine provides ethical best practice.

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FORSYTHE

That's absolutely true and I think it's one of the most fascinating parts about transplant surgery is that actually we have to have some element of skill in trying to come to some pragmatic resolution of ethically complex issues.听 So really the idea whether there should be checks and balances in addition I think might just be too bureaucratic and might actually cause problems.

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BAKEWELL

Okay, it's time for your own decisions.听 Deborah, what would you advise?

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BOWMAN

For me this is all about this family making a choice that is right for them.听 I think there were ethical jump off points for the team, particularly when they were offering this particular intervention - this experimental intervention.听 Having offered that, however, I would argue that it is up to Charlotte and her husband to decide what is right for their family and what risks they're prepared to take, as long as the surgeons believe that they are doing something that ultimately is justifiable.

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BAKEWELL

John, what would you say?

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FORSYTHE

I'm going to be very honest, I'm going to say that when this case actually happened I think I probably would have been against the transplant going ahead, only because at that time it would be very unusual for somebody who isn't on the cadaveric list to have been allowed to then receive a live donor transplant because of the extra risk that that suggests.听 There is a temple gradient in live donation over the last number of years - better success and also an acceptance that actually as long as people are well informed it is more reasonable to accept a higher level of risk.听 For those reasons I think my answer would differ now compared with then.听 Then I think I would have said no, today I think I would say yes.

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BAKEWELL

Fiona?

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LOUD

Two, three years ago, when I was facing my transplant, we would have said yes in this case because I've mentioned the quality of life, I think the opportunity to improve on that with a full understanding of those risks that are inherent I think I would be speaking for my husband as well, I think Keith would also say it was worth taking the risk.

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BAKEWELL

Well Charlotte and Robert had a decision to make.听 They spoke to their family and asked whether they would care for their son should anything go wrong during the operations.听 Then they decided to go ahead.听 Their doctor, the transplant coordinator and the surgeon all felt the burden of responsibility.

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DOCTOR

Having considered all of the issues for Charlotte and Robert we felt that the best chance for her long term health was to proceed to a living donor transplant from Robert and we felt that was an entirely ethical way forward compared to the prevailing views at the time.听 The majority of the transplant community would have felt that there was something unethical about what we were doing.

听

TRANSPLANT COORDINATOR

We had to say you need to recognise that we haven't done this before.听 Basically she was being a guinea pig in a way.听 But they understood absolutely, right down to the last moment when they were signing the consent form and we checked that they were absolutely clear about where the risks lay.听 What happened thereafter was then in the lap of the gods to a certain extent and the clinical expertise that we had available to us.

听

SURGEON

I felt that the decision having been made and discussed, patients signing a consent form in full knowledge of the risks meant that ethically whatever the outcome this was the right way forward.

听

BAKEWELL

The day of the operation - Robert and Charlotte both came in for surgery.

听

ROBERT

We both ended up in hospital in adjacent beds - Charlotte with her machine filtering her blood for 72 hours, or however it long it was before the operation and I was prepared for theatre in advance of Charlotte.听 And I was - I was wheeled away.听 It's a bit difficult saying goodbye to your wife in those circumstances and thinking about yourself.听 I felt very much as if I had the easy part - I just had to just lie and be quiet for a few hours.

听

DOCTOR

The entire team were on tenterhooks really about how this was going to go.

听

SURGEON

Both operations were performed at the same time.听 The kidney was removed and immediately was put into Charlotte and there was no damage to that kidney, it was in perfect condition.听 The key then was to make sure that the operation was performed with as little blood loss as possible and with absolute attention to detail, to ensure that there would be less chance of bleeding afterwards.听 And if there was bleeding afterwards I probably only had myself to blame for not doing a good enough job at the first time of asking.

听

ROBERT

I remember waking up from the operation.听 They were very keen about me, to make sure I was alright and obviously you're groggy.听 And the overriding concern was about Charlotte.听 And I was back on the ward first and then Charlotte was brought up.听 And it was emotional, it was very difficult because you're well outside your comfort zone and you're in the hands of others.听 So it seemed to have gone well and I was really thrilled about that.听

听

SURGEON

For the first few days everything was fine but then the kidney which had been working well ceased to work so well.听 The blood supply appeared to be poor and therefore we felt that there was probably clotting in the kidney and we wondered whether this was to do with her underlying sticky blood syndrome.听 We were horrified as a team.听 We were feeling extremely depressed by this turn of events.

听

ROBERT

I was getting better, relatively quickly back to my feet and Charlotte wasn't.听 And on her 40th birthday we had a little party round her bed and I saw the surgeon/consultants wander in and I looked at their faces and I just thought - not good news.听 And they said - this kidney is clotting off and if we can't work out why and solve it in the next 24 hours we're going to take it out.

听

BAKEWELL

Taking Charlotte back into theatre and exposing her to yet more risk of bleeding was the last thing the team wanted to do.听 The doctor in the room at the time had to explain to Robert what was happening.

听

DOCTOR

She was really quite sick and I remember having a conversation with Robert about the possibility that she wouldn't survive the post-transplant period.

听

ROBERT

I remember thinking - oh my god, you're not going - and I was just so upset and there is an element where you think well is it worth it and you know it is.听 But you've got your son, you're in a lot of pain yourself and your wife's heading back to intensive care and no one is giving you that confident look to say this will be alright.

听

BAKEWELL

John, I saw the expression on your face as that story unfolded.听 Was it then still ethical to have proceeded in these circumstances when people might die?

听

FORSYTHE

Yeah, I mean it is - you feel don't you - you feel the emotion and the problems for both patients and also the team, obviously hurting as things don't go well.听 It is a very difficult situation and I have to say having been involved in some live donor transplants which haven't gone well it is devastating because it is - people have put so much into this moment for so many months prior to it and it is - it is very tough indeed.听 But I guess I would always fall back in these circumstances on did the donor and recipient know the likely complications ahead of time and if they did then I would feel that I could go back and talk to them and help as best as I could to talk them through it and help them through it.

听

BAKEWELL

Deborah.

听

BOWMAN

Ethical practice isn't necessarily about a good outcome, we want it to be but it's also about truth telling, about honesty, about choice, about respecting people's preferences.听 And I think this team did that.听 I was struck that one of the team said it was entirely ethical, I think I would question whether anything is always entirely ethical or entirely unethical.听 But within that constraint I think this team has cared for this family and that was an ethical thing to do.

听

BAKEWELL

Fiona, from your broader remit in contact as you are with so many of the charities concerned with transplants, do donors feel responsible if someone dies?

听

LOUD

This is where reality really comes in isn't it.听 I think that donors are absolutely devastated because there's such a lot of hope and faith invested in this and even though you are counselled and it is made quite clear that there are a number of risks you hope, of course, that it will be the holy grail.听 So I think that there is almost a higher sense of disappointment if the operation should fail and not be successful than there would have been if this had never started in the first place.

听

BAKEWELL

You raise an interesting point there about hope - that people vest hope in these opportunities.听 Does hope sway ethical decisions?

听

FORSYTHE

That's interesting, I do think that probably sometimes strong motivation from patients and potential donors challenges us, it pushes us further.听 I mean one of the first transplants that I was involved in of this type where there was a higher risk to the recipient, were two men in their 50s, two brothers, and the potential recipient had a lot of heart disease and probably wouldn't have survived very long even if he didn't have kidney problems.听 But yet his brother, who was a very religious man, came to me and said that he was determined that he wanted the last few years of his brother's life to be at a higher quality of life, I'm not looking for medical success as you would define it, I'm looking for success as my brother and I would define it.听 And we went ahead with that transplant and the gentleman died, I think, about six or seven years following his transplant, had a high quality of life and all the family felt that that was the right thing to have done.

听

BAKEWELL

You can't eliminate hope from the human personality can you in such a situation, so it's bound to be a component.

听

BOWMAN

Absolutely and indeed I think it should be, not unrealistic hope, not uninformed hope but hope for a future that may not be just about medical outcome and I think John's story really brings that home that when we talk about ethical practice and good outcome is often clinical but it may be about living long enough to see a grandchild, being able to go on a holiday without the burden of dialysis, things about relationships that we can never know when we only see patients as a snapshot.听 So I wouldn't want to eliminate hope ever.

听

BAKEWELL

Well now we're going back to how the story ends and this will surprise you.听 The doctors discovered that the clots in the kidney were nothing to do with her condition, rather a side effect of one of the three anti rejection drugs she'd just started taking.听 So they removed the drug and the clotting stopped.听

听

SURGEON

We never really felt confident of the outcome during the first year because there were many twists and turns in this story.听 But she gradually got better.

听

BAKEWELL

And now? Charlotte is fully fit, and both their lives are totally transformed.

听

CHARLOTTE

Nine years on from having the transplant you do tend to almost put it to the back of your mind because you're back to very much the way you were before you had problems anywhere.听 When you're on dialysis you feel very sluggish and very tired and it's almost like you're operating in a fog, your brain really doesn't concentrate very well.听 And so I felt so much better.听 My brain suddenly seemed so much clearer, like it had been spring cleaned.听 I'm working full time, I only get as tired as other mothers do and apart from the fact that I still take all the medication that goes with it, absolutely fantastic.

听

ROBERT

I've always said that donating a kidney was the most selfish thing I've ever done and it gets a laugh but actually my life is so much easier now - to have Charlotte back.听 And we've been able to travel, it's just fabulous.

听

CHARLOTTE

And of course I'm actually looking after the kidney a lot better than you ever did and it doesn't get bathed in so much alcohol.听 So there are some advantages.

听

ROBERT

Yeah it's extremely irritating that the annual results do show that my - sorry your kidney is performing better than the one that's been left behind.

听

ENDS