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INSIDE THE ETHICS COMMITTEE

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Programme 2. - Temporary Transplants

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RADIO 4

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WEDNESDAYÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý 18/05/05ÌýÌýÌýÌýÌýÌýÌýÌýÌý 2000-21045

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PRESENTER:ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý VIVIENNE PARRY

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CONTRIBUTORS:ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýALAN WATSON

ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýSHAUNA HEWLETT

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PRODUCER:ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý MICHELLE MARTIN

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NOT CHECKED AS BROADCAST

PARRY

The more medicine can do for the sick the more difficult treatment decisions have become for medical staff, patients and their families.Ìý In many cases there is no clear-cut answer.Ìý Increasingly clinical ethics committees are helping in these difficult situations, their members include lay people, religious representatives and lawyers, as well as medical staff who can stand back and consider the case from all points of view.Ìý In this series - Inside the Ethics Committee - I'll be presenting real life cases to a panel of four experts, all of whom sit on clinical ethics committees around the UK.Ìý With testimonies from expert witnesses and those involved in the case we hope to show you how a committee would develop their advice and you'll be able to give us your thoughts too.Ìý I'll be telling you how later on.Ìý

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In today's programme we're considering the heart rending dilemmas involved in offering a temporary transplant to a baby.Ìý Let's first of all hear from the chairman of the clinical ethics committee in the hospital where this case arose.

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CHAIRMAN

Baby A was born with a very abnormal intestine which required emergency surgery in the first few days of life.Ìý Unfortunately the bowel was so severely damaged that most of it had to be removed.Ìý Now 10 or 15 years ago this child would have died but we are now able to feed these children intravenously and one of the problems with prolonged intravenous feeding is liver damage and liver failure.

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PARRY

And that's exactly what happened.Ìý After a few months on intravenous feeding Baby A's liver began to fail and needed to be replaced.Ìý But the problem here is that unless a new bowel is transplanted at the same time Baby A will still have to be fed intravenously, which of course is what destroyed this baby's own liver.Ìý But combined liver and bowels are not often available, as transplant surgeon David Mayer, chair of the Liver Advisory Group to UK Transplant, explains.

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MAYERÌýÌýÌýÌýÌýÌýÌýÌý

In this case we can take a liver from a larger donor, up to 10 times larger, and cut it down to the right size.Ìý And so it might take us just a few weeks to find a suitable liver.Ìý Whereas for a liver bowel, we're very much more restricted and we can only take a liver bowel from a donor perhaps three times the size of the child.Ìý We've had children of this age waiting six months or more for a liver bowel, whereas we would be disappointed if we couldn't find a liver within a couple of months.

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CHAIRMAN

The child was dying rapidly of liver failure and the parents asked if the child would be considered for an isolated liver transplant without the bowel in order to save the child's life.Ìý So the question that was brought to the ethics committee was, was it appropriate to offer this particular child an isolated liver transplant when we knew that the liver would become damaged again within 6 or 12 months by the intravenous feeding?Ìý The issue was, was it fair to waste this particular liver when that organ could bring life to another child or adult?

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PARRY

So the stark reality is that Baby A will die within a few weeks without a new liver.Ìý But the dilemma here is that a new liver won't be a cure, just a temporary patch.Ìý Is this a waste of a very precious resource that could bring years of life to another child?

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Now let me introduce you to the panel today.Ìý We'll start with Dr Alan Watson, who's consultant at the Children and Young People's Kidney Unit in Nottingham.Ìý Shauna Hewlett, paediatric nurse and patient advice and liaison officer at Manchester Children's Hospital.Ìý Carolyn Johnston, lecturer in medical law and ethics at Kingston University.Ìý And Mike Parker, professor of bioethics at the Ethox Centre in Oxford University.

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Mike, what are the main ethical points raised by this case that we ought to be discussing today?

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PARKER

This is a deeply distressing and difficult situation for everyone involved and one's heart goes out to the parents themselves and the health professionals involved in this case.Ìý It seems to me there are basically three categories of ethical issues presented by the case.Ìý The first clearly are to do with what would be in the best interests of this child.Ìý Secondly, questions about how the decision should be made, who should be involved in the decision.Ìý And thirdly, questions around priority setting, about how limited resources, such as liver in this situation, should be allocated and how decisions about that should be made.

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PARRY

Okay, well let's start with the question of the best interests of Baby A.Ìý Mike, what do we mean by best interests and what objective evidence do medical staff consider when they talk about best interests?

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PARKER

The objective criteria will be things related to the nature of the surgery, how invasive that's going to be, how difficult recovery's going to be for the child and how much time is going to be spent in hospital, there are going to be a number of clinical objective facts but there are going to be some to do with the values of the parents, about what is a good quality life and those will be brought together, it seems to me, in the decision.

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PARRY

Carolyn, legally what are we trying to balance up here?

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JOHNSTON

Well the prime consideration is the welfare of the child, and that's the paramount issue at hand.Ìý In deciding that we have to balance the benefits and burdens of the treatment - how invasive this treatment will be, the likely prognosis afterwards - balanced against that is of course the fact the child will die without treatment.Ìý We also have to consider who determines best interests and the extent to which the parents' view should be taken into account.

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PARRY

Now in terms of survival we've already heard that without a bridging liver the outcome for this baby is grim.Ìý But one of the things that you'd want to know in coming to a decision I guess is this:Ìý if Baby A does get this isolated liver and then a liver and bowel transplant what are the chances of survival.Ìý Unfortunately there's rather limited evidence because there have only been some 600 operations worldwide, most of them in the States, it's clearly high risk, highly invasive surgery.Ìý But of those that survive it only half are still alive after five years.Ìý But alive isn't enough, what sort of quality of life is Baby A likely to have?Ìý Let's hear from the chairman of the ethics committee involved in this case and then the liver surgeon.

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CHAIRMAN

If Baby A had a successful single liver transplant the chances are that they would be able to go home, be fed intravenously at home and have a reasonably good quality of life.Ìý If there were complications after the transplant then the hospitalisation is likely to be prolonged and intravenous feeding continued in hospital.

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LIVER SURGEON

The recovery time for these children in particular who've just received a liver but who still have a major bowel problem can be many weeks.Ìý Then of course they have to go through the same thing again after a liver and bowel transplant.Ìý So it is putting the children and their families through a very difficult time over weeks or months.

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CHAIRMAN

After a combined liver and bowel transplant Baby A would have a 50% chance of being alive, whereas they're almost certainly going to be dead without one.Ìý For the first year they are very intensively monitored by the hospital.Ìý By 12-18 months the number of medications and hospital visits decrease and most of them are back to normal life.

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PARRY

So there's no doubt here that this liver is going to save this baby's life in the short term but only half of liver and bowel patients are alive after three to five years.Ìý Alan Watson, you're a consultant in a children's hospital, do you think this a good enough chance of survival, what about the sort of suffering that Baby A would be subjected to?

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WATSON

I think that you've heard statistics quoted and of course the trouble with statistics is that they apply to, if you like, groups of patients.Ìý What is very necessary for Baby A is to consider the individual risk and the individualised treatment for this child.Ìý Because if this child is otherwise intact, if this child has no other co-morbid conditions, in other words there's nothing else wrong with the child's brain or any other conditions, then in fact the child's quality of life could be good if it survived.Ìý And most people would take a 50/50 chance as being reasonable.

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PARRY

Well presumably for the parents I mean 50% is a great chance, compared to the zero chance of success if the baby doesn't get this liver.Ìý What are your thoughts on this Shauna?

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HEWLETT

I absolutely agree, I think parents are desperate to give their child every chance of living in these circumstances.Ìý If there is a hope at the end of this that they'll be able to take their child home then they're obviously going to want to take that chance and ask for the bridging liver to be given to their baby.

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PARRY

I mean there's really no other option for the parents is there.

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HEWLETT

There isn't at this point, no.

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WATSON

I think that one must appreciate that parents want us naturally to cure their children, they're sometimes looking for miracles.Ìý And we are here in a situation where we are pushing back, if you like, the technological advances.Ìý Therefore, one has to look at the facts and the burden of care that this child will undertake in order to try to achieve the best consensus.Ìý

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PARRY

Mike.

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PARKER

Whilst it's true I think that generally parents will choose to have the operation, it seems to me we ought to really bear in mind that just because we can do something doesn't necessarily mean we always ought to do it.Ìý And whilst the statistics in this case may mean that we should operate, it seems to me that it's not absolutely clearly the case, this child will have gone through three pieces of major surgery and sometimes I think parents may legitimately make the decision that this is putting the child through too much.Ìý And I'm not sure that's the case in this one but I do think we need to bear in mind that just because we can do something doesn't necessarily mean we have to do it.Ìý And we need to keep in mind the child's best interest in these cases.

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PARRY

Alan, can I bring you in there, you're clearly at the coal face, what is this sort of surgery like for a child?

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WATSON

Well it requires a lot of invasive procedures.Ìý And so one does have to look, when thinking about the child's best interests, about the tolerability of the treatment because if the child undergoes a number of blood samplings, is hospitalised for a long period of time and isn't able to be nurtured and looked after in a kind of humane way and spends a lot of time in intensive care, some people would say that that was putting the child through too much.Ìý And so one does have to consider the child's interests.

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PARRY

The quality of life, Shauna, is presumably the thing that you would rate most importantly?

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HEWLETT

When parents come to the paediatric patient advice and liaison service we often don't see things as health professionals from their point of view and though we're making clinical decisions in this area the quality of life cannot be measured, a certain look, a certain facial expression, a certain movement that brings fleeting moments of joy to that family that we will never understand and we can't perceive - those are the qualities that as health professionals that we're not going to be able to measure but that parents can inform us to try and help with that decision making.

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PARRY

And presumably it would be awful if, as a parent, you weren't able to cuddle your child because they were hooked up to all sorts of equipment and gear and just sort of trapped there in the bed, that would just be destroying I think for parents.

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HEWLETT

I think it is and again it's the bonding then that people try and maintain between the parent and the baby in those difficult circumstances.

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PARRY

Alan.

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WATSON

I think it's important that we judge not the value of the child, as such, but the value of the treatment because it is the, if you like, the tolerability of the treatment that the child has to undergo that should be of major concern.Ìý After all for instance in this instance although there's a certain survival rate after a liver transplant we are in a rather unique situation that we cannot really forecast because the child is having - potentially going to have a liver transplant but will still need a liver and bowel transplant.Ìý And therefore the chances of having a successful liver and bowel transplant may be compromised because he's already had an operation for the liver initially.Ìý And so we're in uncharted territory.Ìý And what may happen is that if the child undergoes this bridging liver transplant we may be able to see how he responds and comes out of that transplant in order to assess whether he is strong enough for the next procedure.

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PARRY

Carolyn, are there any legal precedence about this?

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JOHNSTON

Well generally there's a very strong presumption in favour of taking all steps to preserve life, but that's not absolute and one has to consider the quality of life of the child after treatment.Ìý In this case we can say that Baby A would have a good quality of life with the bridging liver.Ìý There was an interesting case of a child who needed an urgent liver transplantation to stay alive and the parents refused to give consent to that, considering that they would prefer to look after the child and give it a peaceful and dignified short life, rather than subject it to invasive surgery and the risk of rejection and constant immunosuppressant drugs.Ìý And the court agreed with the view of the parents.Ìý The court there found that it was very important for the mother to be completely behind the transplant, which she wasn't and that the court considered the interests of the mother and the child as one for the purposes of that case.

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PARRY

Because it would be terrible if the child was saved only to have, for instance, dreadful brain damage and then the parents just felt that they were not able to care for the child thereafter.

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JOHNSTON

Yes, the views of the parents are very important in determining best interests of the child.Ìý Nevertheless, they're not completely determinative and if there is a disagreement between clinicians and the parents then the court should get involved to take an objective view of best interests.

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PARRY

Would you bring in other considerations here for instance, if this is the only child, a very precious child perhaps born by IVF or something like that, does that count in these sort of decisions Mike.

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PARKER

It seems to me that it may do but the starting point ought to be the best interests of the baby or the child.Ìý I mean one of the dangers of the point you've just made is that if parents place too much value, as it were, on the preservation of life at all costs it may be that even they overlook the situation that the baby's in.

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PARRY

Let's recap.Ìý On Inside the Ethics Committee this week we've been discussing the case of Baby A, who will die unless a new liver can be found.Ìý But this new liver is only a temporary solution because Baby A's medical condition will cause it to fail after six months or so.Ìý But hopefully by this time the combined liver and bowel transplant needed for a permanent fix might have become available.Ìý

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We've already talked about Baby A's best interests, let's move now to autonomy.Ìý A patient's right to refuse treatment is firmly enshrined in law and patient autonomy is one of the first principles of medical ethics, but what happens if they can't speak up for themselves, as in this week's case?Ìý Here there's also a further difficulty in that there's a difference of opinion not just between the doctors and parents, who as you can imagine desperately want the bridging liver for their child, but between different members of the medical team caring for baby A.

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CHAIRMAN

The parents were fully counselled that the best curative procedure for their child was a combined liver and bowel transplant.Ìý They knew that an isolated liver transplant would only be a bridge, would only buy three to six months of life for their child.Ìý But any parent facing the death of their child in general wants nearly everything done for their child.Ìý There was a difference of opinion within the team as to whether it was appropriate to offer a bridging liver transplant because the quality of life during those extra months would be variable, the child would be in hospital, still require medication.Ìý Other members of the team felt that if the child was given a bridging liver transplant it would be the right thing to do because they felt that the chance of life would be appropriate for the child and the family.

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PARRY

Carolyn, the wishes of patients are paramount in medical ethics but legally what happens in cases like this where the patient can't speak for themselves, who do you listen to?

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JOHNSTON

You listen to the parents, who have authority to speak on behalf of their child.Ìý But they must take decisions based on the best interests of the child.Ìý And usually the wishes of the parents will be determinative, unless it's in conflict with those views of the clinicians and that of course was the case in the Charlotte Wyatt case, where the parents wanted invasive treatment in the event of respiratory failure with Charlotte and the clinicians thought that wouldn't be in her best interests given the quality of life she would have, the likelihood of success of the treatment.

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PARRY

What happens if it's the other way round, where the parent doesn't want the treatment and the clinicians do?

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JOHNSTON

Yes, this may happen perhaps for religious reasons.Ìý Where parents refuse to consent to treatment generally there will be a presumption in favour of preserving life and so the clinicians would be justified in treating the child.Ìý But they must involve the parents in the decision making process.Ìý It's only where the quality of the life of the child would be so poor after treatment that I think treatment would not be carried out.

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PARRY

Mike.

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PARKER

This is an extremely distressing situation for the family to be involved in, for health professionals and so on.Ìý Although I listed three sets of ethical issues at the beginning I think a key ethical here for the practitioners is how best to maintain a good relationship and good communication with the family and with those who are having to make this decision.Ìý That's going to be key to the difficulties and distress here being minimised.Ìý What we need is part of our professional responsibility, as it were, to manage that situation in a way which is compassionate and which involves people in the decision.Ìý The nature of the conversation with the parents should be not about what the parents want but about what they think is in the child's best interests.Ìý So there's the process and the nature of the conversation which are both relevant here.

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PARRY

But sometimes I guess for parents it may be very difficult, particularly with very technical treatments, to understand properly what's going on, is that the case Shauna?

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HEWLETT

Yeah, and that's what I'd like to pick up on.Ìý Often the conversations that clinicians have, healthcare professionals, with parents they actually believe that those parents have had the information, that they've been given every prognosis, the risks etc., but where parents come to us it's not what they've understood and it's not what they've picked up and so what we have to do is revisit what parents have understood, what their emotional mental health is around the issues that have been discussed with them and what they've actually taken on board.

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PARRY

And of course in these cases where people are so distressed you can take in really very little information.

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WATSON

I think that to emphasise that point is that people lose perspective if you're in a hospital intensive care unit with your child in front of you and you haven't been outside the door for a week then you can become very stressed indeed.Ìý And I think bringing this case, in particular, to a clinical ethics committee does help the clinicians and possibly the parents to help them to step outside the box and look at things in a little more objective way.Ìý Bearing in mind that we have Baby A's interest at our heart.

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PARRY

Carolyn, what happens when communications breakdown irretrievably between doctor and parents?

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JOHNSTON

Well of course the challenge is wherever possible to achieve consensus between the clinicians and the parents.Ìý But if the parents and the clinicians do disagree then the matter has to be resolved by the courts.Ìý The views of the parents will be weighed very heavily in the decision making process but nevertheless the decision has to be in the best interests of the child and this was considered in the case of Glass.

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PARRY

Just remind us of that case.

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JOHNSTON

Well this concerned a boy called David Glass, who was severely physically and mentally handicapped.Ìý And he went into hospital to have an upper respiratory tract obstruction removed.Ìý And the doctors felt that he was in a terminal phase and wanted to administer diamorphine.Ìý And …

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PARRY

Diamorphine is a painkiller?

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JOHNSTON

Yes.Ìý And ultimately they put a do not resuscitate order on David's notes without consent of his mother.Ìý In the European Court of Human Rights the mother won her claim that this was a breach of an article 8 right that David had, for his mother to be involved in the decision making process.Ìý And the court found that where there is time if there's a difference of opinion between the clinicians and the parents then the matter must go to court to resolve the issue.Ìý But of course that should always be a last resort and the process of decision making should be shared between the parents and the clinicians.

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PARRY

I mean that's an awful thought that you'd get more and more cases going to court isn't it Alan?

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WATSON

Well very much so but I think that it emphasises again that what we must do is involve parents and often extended family members - consider the siblings - in our decision making.Ìý And therefore if there is a dispute we should try to take them to clinical ethics committees, if you like, in order to have a greater forum in which to discuss issues and hopefully prevent this sudden rush to the courts in order to make decisions whenever there is disagreement.

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PARRY

Carolyn, would it be different if Baby A was older?

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JOHNSTON

Yes.Ìý For an older child obviously they are going to be part of the decision making process.

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PARRY

Now what do we mean by older here?

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JOHNSTON

Well that's a difficult one because in order to take a legally valid consent the child must be of sufficient intelligence and understanding to understand the treatment options.Ìý Given that this is quite an invasive and difficult treatment, with difficult prognosis issues, it might be difficult to show that the child of any age would have that understanding.Ìý But then would an adult?Ìý Certainly a 16 or 17 year old may be able to consent to this sort of treatment if they are fully informed and understanding but I don't think a clinician would proceed without the consent of the parents as well.

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PARRY

Mike.

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PARKER

It seems to me that very strongly it ought to be the case that children who are capable of understanding ought to be involved in the decision making process.Ìý It's important, I think, to not go from one extreme to the other, so it's not only the case that children should be involved or not involved at all, even very young children, it seems to me, ought to be involved in some respect, they ought to know, for example, that they're going to go into hospital, that they're going to have surgery, they ought to be informed and talked to, even if they're not ultimately going to be making the decision, I think it's important not to exclude the person who's being operated upon.

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PARRY

I want to briefly touch on alternative medical options.Ìý One of them might be live liver donations - this is where you take part of the parent's liver and transplant it to the child.Ìý At the moment there's only been a small number of these done in London and it's not yet a widely available procedure.Ìý One of the biggest drawbacks of course is that it involves a major surgical procedure for an otherwise fit and active adult.Ìý And there have been some deaths amongst donors.Ìý Alan, you work all the time with transplant surgeons and obviously live kidney transplants are a reality and there are great advantages and some disadvantages to people involved in them, but what about live liver donations?

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WATSON

Well indeed we are very reliant on kidneys donated by parents for their children because of the shortage of organs worldwide and especially in the field of kidneys and liver.Ìý And we quote - we have to quote a mortality, a morbidity risk to these potential donors which in terms of kidney donations is about 1 in 3,000.Ìý But that risk may be much higher for living related liver donors, a technique which is only just beginning to be developed but will probably increasingly develop.Ìý The reason that risk is higher is because we've done much fewer of them and it may be a hundred fold higher than it is at present for kidneys.

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PARRY

It's an extraordinary pressure though to be on a parent.Ìý Mike.

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PARKER

That's the concern here that the parent may feel they've got no choice.Ìý But it seems to me that if we think about ideal moral acts, as it were, altruism towards one's child ought to rank fairly highly, so that if people are fully competent, they're not under pressure and they really want to do this it seems to me we ought to celebrate these kind of acts of altruism.Ìý But bearing that in mind we ought to be cautious and we ought to protect people and support them where they actually decide not to do this.Ìý There have been cases of people who've decided not to donate to their children, particularly in the States, and I think people ought to be supported in that kind of situation, they shouldn't be stigmatised, as it were, for not having done that.Ìý But we ought to support altruism where it exists.

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PARRY

Well I can imagine the rest of the family just ostracising someone who wouldn't donate.Ìý Shauna, what's your thoughts?

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HEWLETT

… situation indeed, I mean if it's - the example if you had saw your child drowning in a river you would jump in and save that child, not thinking about the risk to yourself.Ìý If you are weighing up the risks and benefits of what you're doing it's an instinct and it's something I think it's very much being part of a parent is that you will want to do that.

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PARRY

Let's turn now to the question of resources, which I think is the thing that hangs heaviest over this particular discussion.Ìý Right at this very moment, today, now, 284 people are waiting for liver transplants.Ìý We know that because organ waiting lists are managed nationally by UK Transplant.Ìý So how might the decision for Baby A impact on others awaiting surgery?Ìý Let's hear the testimony of David Evans, transplant surgeon and chairman of the Liver Advisory Group for UK Transplant.

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EVANS

In this case this liver might be used for up to 15 or even 20 other children waiting on the national waiting list.Ìý We have a national database at UK Transplant and when a liver from a child donor becomes available there's a number of factors that we have to take into account, which include the blood group of the child, which has to be the same, we have to look at the weight of the child and take a judgement as to whether that's an appropriate weight of the donor and we also have to take into account how sick the children are, whether we think that the child can survive the liver transplant operation and finally how long they've been waiting on the waiting list.

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PARRY

So this piece of liver could be used by 1 of 15-20 other suitable children on the waiting list, many of whom could have no other complications and a much better chance of survival.Ìý Alan, in your renal unit you often deal with transplant patients, what's your duty to the donor's family?

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WATSON

Well I think that this is a scarce resource, it's been donated by the family with the expectation that it would give the greatest benefit to somebody who is waiting for a transplant.Ìý So therefore in transplantation we're always considering the kind of justice aspect of ethics.

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PARRY

I'm just going to bring you up short there - justice, what do you mean by justice?

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WATSON

Well that in a way you want to use the organ that has been donated to the best benefit, to give it to someone who actually is going to benefit with an extended quality of life, with longevity of life.

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PARRY

So do you mean you need to give it to the person who's likely to benefit most?

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WATSON

This is where it becomes complicated because in fact you might say the person who's going to benefit most is the person who's likeliest to die the quickest.Ìý But in fact if you did that then you would run into the complications of saying well those people who are going to die the quickest might actually not be the best candidates.Ìý And so we have evolved in transplantation scoring systems whereby in order to get an equitable distribution of kidneys, if you like, your chance is based not on your age or your sex or your religion but it is based on a scoring system that is computed for every patient.Ìý In liver transplantation we'd have a particular difficulty because there may be patients who are rapidly deteriorating and needing a liver transplant, because, for instance, they've swallowed an overdose of tablets, or they're an alcoholic who suddenly needed a transplant versus someone who has been waiting much longer with a chronically advancing liver problem, such as Baby A.

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PARKER

It's extremely important and I think appropriate that we started this programme by thinking about the best interests of the child but the one problem which often we try not to talk about or try to avoid if possible is the question of priority setting.Ìý Any treatment that we provide has got costs associated with it, sometimes those are financial costs and some of them, as in this case, in addition to the financial costs, bring a cost, as it were, there are other patients who could have benefited from this treatment.Ìý So we're choosing between patients.Ìý It seems to me the key principle here is, as Alan said, is justice and what I mean by that is that the decision ought to be a fair one and it ought to be made on the basis of criteria that are relevant.Ìý Those may well be to do with cost effectiveness, effectiveness of the treatment, they may well be to do with need, for example, someone's been waiting a longer time or needs it immediately, as Baby A does, that ought to be factored into the decision.Ìý But it does seem to me the key thing here is fairness and that we ought to be justify these decisions.

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PARRY

But can you ever be fair, Mike, in a situation like this?

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PARKER

It seems to me that fairness here means that you make the decision in a way which is according to principles that are - and criteria that are relevant, that you're able to explain to the people who are affected by the decision the process and whilst the decision may sometimes go against what they actually wanted to see that they can recognise this as a fair process.Ìý So there's fair process and then the decision, as I say, fairness there means that the decision is made on relevant criteria - not sex, age and so on - it ought to be based on clinical effectiveness, need and those sorts of things, so that's what I mean by fairness.

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WATSON

Yes, I mean in the system that we work in, in the National Health Service, one would expect to use one's resources in the most effective manner.Ìý Now of course we have, if you like, our individual duty to the patient, to Baby A, versus, if you like, the need to use this limited resource, which is a donated liver, to the best benefit.

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PARRY

But if you've got Baby A right there in front of you it's Baby A that's occupying your mind, surely, not the other children that might benefit - would that be your position Shauna?

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HEWLETT

I think that is - parents are often sympathetic that there are other children, there are other people that are needing, for example, an intensive care bed or other resources within the NHS but their priority is their child and that's the voice that you've got to hear for Baby A here in this situation.

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PARRY

I mean it has to be if you're a parent doesn't it, I mean you can't actually think of other children, you have to think of your own child.

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WATSON

But in terms of - in terms of providing the treatment that's why we discussed earlier on it's all very well potentially to leap in with a new liver for Baby A but we have to look at what is Baby A going to go through in terms of the tolerability of that treatment.Ìý If this is only a bridging treatment and not a definitive treatment it might actually prejudice his chances, if you like, of having a successful liver and intestine transplant because a liver will maintain Baby A's life but may not actually give him that longevity of life, that quality of life, that ability to grow up as a normal child.

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PARRY

And every child on that waiting list has a parent who desperately wants that transplant.

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PARKER

That's exactly right.Ìý It's important and it's a key question in priority setting and resource allocation - you've got the baby in front of you, as it were, but that other babies are also babies, they're also people and it's important that we're fair in this sense.Ìý Of course we have particular ethical responsibilities, duties of care, to the patients in front of us but it's important that we don't forget that these are other people as well, other babies and we need to not treat them as if they're statistics, as it were, the decision needs to take into account the broader context.

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PARRY

Mike, what has the greatest weight then - saving a life or preventing a death?

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PARKER

It seems to me wherever we can we ought to saving life and we ought to be acting in a way which has the best chance of saving a life, so if we've got two children, as it were, and we've only got one organ that we can use then we ought to look at those cases and see where we can act most effectively to preserve life.

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PARRY

Carolyn, can donors specify who they want their loved one's organ to go to?

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JOHNSTON

No they can't, the donation must be made purely altruistically.Ìý A few years ago somebody offered to donate, I think it was a kidney, but only if it was used for a white family and that was politely rejected, it underlines the need for pure altruism in this case.

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PARRY

Alan, do you ever encounter problems like this?

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WATSON

No, unfortunately these are problems often encountered by our transplant coordinators, people who actually have to deal with organ families, which we hope to do in the most sensitive way possible in order to increase organ donation.Ìý But we all agree in the community, transplant community, that such specification of whom should receive a kidney is not really permissible.

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PARRY

We've been discussing the case of Baby A who is dying from liver failure.Ìý But this baby's medical condition means that a liver transplant is only a temporary solution whilst waiting for a combined liver and bowel transplant.Ìý What would your advice be as a panel member of an ethical committee considering this case, Mike?

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PARKER

It seems to me that there are three key decisions that need to be made.Ìý The first is, perhaps not a decision but a process, which is that good relationships with patients are important and that at all costs, as it were, we ought to work towards maintaining those relationships and problems arise where there's conflict, so we ought to be avoiding that if possible.Ìý Secondly, the focus of the decision ought to be on the best interests of the child, that doesn't necessarily always mean there should be an intervention but in this case, it seems to me, that the arguments in favour of an intervention outweigh just about those against.Ìý So we ought to, it seems to me, intervene if there's a resource available.Ìý Now of course the problem with that is it raises these wider resource issues.Ìý The bigger system - the bigger picture is important in that we need to think about a system which generates more organs but given that we can't it seems to me that some of these other children you've talked about, where a child only needs one operation with an 80% chance of success starts to look like those cases are more likely to be successful than this one.Ìý So I can imagine a situation in which the organ might go to another child, which would be extremely unfortunate and distressing but that does seem to be the kind of decision that's going to be made.Ìý So if the organ's available treat, if there's a conflict between this and a child where there's more likely to be a successful intervention then I think we'd have to look very closely at that and difficult decisions would have to be made.

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PARRY

So I'm really taking that from you as a personal opinion of actually not to treat?

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PARKER

Well to treat if there's an organ available, and clearly even if we decided that this liver should go somewhere else, we'd have to keep working to find a liver, as it were, for this child but I don't think we can avoid the difficult issue of if there's another child that's more likely to survive then I think we should probably treat the other child.

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PARRY

Shauna, what would your advice be?

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HEWLETT

I agree with some of the points there that Mike made about keeping an open dialogue with parents, I think that's of paramount importance in this situation here.Ìý My personal opinion within this - the context of Baby A, if it was myself on an ethics committee giving some sort of consensus towards what would happen, I think in this instance I would be advising that the baby gets the liver in this case.

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PARRY

Do you think that decision really comes from your perspective of being, I guess, the patient's advocate?

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HEWLETT

I think a lot of it does, yeah, I mean I have the benefit really of having both sides of the fence really, where I've been a paediatric nurse for 15 years and also a PAL's officer working with patients in that very close environment trying to bridge the gaps in the healthcare profession in a very complex NHS system and trying to improve our practice through listening to parents.Ìý And in that role I will try and inform the ethics committee from their perspective.

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PARRY

And I guess from a parents point of view there can't be any other decision?

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HEWLETT

I don't think so in this situation no.

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PARRY

Carolyn, you're the lawyer on our panel, what would your advice be?

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JOHNSTON

I think we have to think about the best interests of this child, of Baby A, without the bridging liver operation the child will die and I think we have to give it every chance for an open future for the potential to have the joint liver and bowel transplant in the future.Ìý So given the quality of life of the child and the overwhelming duty if possible to preserve life I think I would say that we should give the baby the bridging transplant.

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PARRY

Okay now Alan, you're at the sharp end here, you deal with transplant patients every single day of your working life.

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WATSON

Sometimes like when you bring these cases in front of judges they say why me but I think …

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PARRY

It's you, I'm sorry.

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WATSON

I think that what we would strive to do is to say acting in the best interests of the child, seeking the opinions of everybody involved, we would try to come to a consensus view because as we said there are doubts within the treatment team.Ìý The parents obviously are very focused on the life of their child, we're focused on the fact that is this treatment tolerable for the child?Ìý Having agreed that Baby A was suitable for a liver and intestine transplant then I think it is behoven upon us to try to achieve that goal.Ìý That goal requires the use of a scarce resource.Ìý But all things being considered, if it was the genuine consensus opinion of everybody concerned then I think that child Baby A should have the benefit of being listed for a liver transplant in order to get the child to the liver and intestine transplant.Ìý Bearing in mind that we're in uncharted territories and so the liver transplant for Baby A may result in a lot of complications which might make us reflect upon whether or not we would go on because the treatment choice is then widened a bit, to say whether or not further treatment is required or whether in fact alternative palliative care may be required.Ìý So I think we do our best, we give it our best chance and I think that's to proceed with a liver transplant.

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PARRY

Now you haven't all come to the same decision here, so what would happen in a real life clinical ethics committee if you didn't all come to the same decision - there wasn't a consensus?

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PARKER

It seems to me that it's important to point out what the role of the ethics committee is.Ìý The ethics committee is meant to be a forum for discussion that health professionals can come and get a range of perspectives and talk through a problem.Ìý The ethics committee isn't to make a decision.Ìý So actually it can be of great benefit for a committee to be a forum where different views are expressed and it's not necessarily the case that the committee needs to come to a consensus, the responsibility for the decision ultimately is the health professionals and the parents, that's their role.Ìý So I actually - I actually think disagreement is of value, as long as it's reasonable and reasoned through and reasons are explored.

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WATSON

I think this illustrates that ethics is not black and white, there are really shades of grey and I think the value even though there may be no agreement is that the doctors and the clinicians involved, not just the doctors but everybody involved, realises that they can reflect upon their practice and it may give them ways to think about the problem, not only this problem but other problems in the future.

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PARRY

Are there any implications in law, Carolyn, if the doctors decide to do something different to that suggested by the ethics committee?

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JOHNSTON

The ethics committee talks through the issues, as Mike had said, the doctor, of course, can pursue a different route but he must be able to justify that, he must be able to show he's acting reasonably and responsibly.

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PARRY

If you were on this ethics committee what would your advice have been in this case?Ìý In today's programme our panel has tried to give you the key points of a discussion that would normally take many hours, if not days, to consider.Ìý If you'd like to let us know what you think visit our website at bbc.co.uk/radio4, when you get there go to Inside the Ethics Committee on the programme A-Z.Ìý If you prefer you can call us with your comments on the Radio 4 information line, that's 08700 100 400.Ìý And thanks to all of you who've e-mailed following last week's programme on religious belief, we've posted a selection of the fascinating responses we received up on the website.Ìý

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Finally, what was the outcome in today's real life case?Ìý Baby A went on to the waiting list for either an isolated liver or a combined liver and bowel but died before either became available.

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ENDS