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Dr Joe Brierley, Consultant in Paediatric Intensive Care at Great Ormond Street Hospital

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Deborah Bowman, Professor of Ethics and Law at St George’s Hospital in London

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Professor John Dark, Consultant in Cardiothoracic Surgery at the Freeman Hospital, Newcastle

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Dr Antonia Cronin, Consultant Nephrologist at Guy’s and St Thomas’ Hospital, London

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I have just listened to the programme about John the lung transplant teenager. It was so moving it was difficult to listen to. Please thank John's family for sharing his story with us, he was clearly a very brave and caring young man

(Andy Sheppard)

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I've really got to stop listening to these programmes on the way to work.Ìý I often end up moved to tears and reflecting that spending the rest of the day sitting in an office seems such a waste of life when you consider how fragile and precious life is. I was particularly moved by the comments of John's mother. This is a terrific series. It's not always easy to listen to but it's always thought-provoking and intelligent. Essential listening about a subject that is likely to affect most of us at some point.

(Jon Mathias)

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My partner and I, like everyone who heard this moving programme I imagine, were reduced to tears at the tragedy of John and his family. Joan Bakewell is the perfect interlocutor, and the panel of experts were professional, sympathetic and compassionate. I am, however, haunted by the thought that it was deemed necessary to ask John about his wishes for his funeral (a devastating process for the most hardy of us, even when it's for a loved one, let alone our own!). Would it not have been kinder to avoid this eventuality? His overwhelming wish was to recover and go to college, in other words, to live. I can't help thinking that a 'good death' can only be achieved with an adult perspective. Thank you for this marvellous series.

(Brian Parsons)

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Thank you very much for this very deep and thought provoking programme. I listened to the programme in my car. ÌýIt made me scream out "Where is the patient in all these decisions". And "how dare you run a programme like this without listening/broadcasting fully the patients' point of view". Or at the very least have a psychologist or a palliative care expert.ÌýI believe that at least one of the two comments you include on your website is from a professor working in children's cancers. ÌýWhy not any parents/families who have been personally affected? ÌýWhy not hear from them! ÌýI took the view from your programme that the family had been persuaded into doing things in a certain way and that their views were not considered.Ìý

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I speak, very sadly, from some experience in these matters. Here is my story in brief. My daughter Chloe was diagnosed with Ewing's Sarcoma, a form of adolescent bone cancer, completely out of the blue in 2010 when she was 15. ÌýDespite various aggressive and extremely unpleasant treatments Chloe kept relapsing. She finally died in February of this year (2013), one week after her 18th birthday. She had been ill for three years. Despite this she had, unbelievably, lived a relatively full life and was always brimming with hopes for the future - even up to a few days before her death.

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Chloe's death was managed by the children's palliative care team at the Royal Marsden.ÌýThank God it was. Chloe had a good death. She was surrounded by compassionate loving nurses and a palliative care consultant and all of her family and we were away from the acute hospital setting. At no point did Chloe ask whether she was dying and, despite being given every opportunity to do so, never asked any of the health professionals involved in her end of life care about what was happening. ÌýFOLLOW THE CHILD/YOUNG PERSON is the advice we all adhered to and I passionately believe that this was the right course of action for my daughter.ÌýI felt that the team worked with me to protect her and allow her to be at peace. I suspect she knew what was happening but she didn't want to verbalise it. ÌýAnd the wonderful team we had around us understood that and we all worked together. ÌýThis is the right way in my humble opinion.Ìý

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Contrast this to the hospital consultant who treated us who, it seemed, believed in a "one size fits all" approach to his patients. His insistence on pushing "the truth" was extremely distressing for both my daughter and my family.ÌýEventually my daughter refused to engage with him at all and refused to attend any meetings. This affected her care. Our consultant was adamant that he had dealt with "hundreds of dying children" and he knew exactly what he was doing. It was impossible to engage him in a conversation about this.ÌýHe just "knew" his approach was right.ÌýHe was a good doctor; but he was a poor communicator.ÌýA colleague of his explained that oncologist's start their career because they want to work with "cells" and they end up having to deal with all this messy human emotion. ÌýMy view is that this can make them intractable and unable to see the patient as an individual.ÌýPeople/families are different and as such need different approaches.ÌýSurely the approach of following the child - most childcare experts would agree - is the most humane and the most sensible.ÌýIf my daughter had ever asked about what would happen, her funeral or anything else I would have, however painful, discussed this with her.ÌýShe wanted to live her life and by not thinking about the future she, and this was her personal decision, was able to do this. ÌýI worked with psychologists at the Marsden and at University College London to ensure that my daughter was treated as an individual. ÌýI fought every step of the way for this.ÌýI loved my daughter dearly and I am so sad that I felt I had to fight for her right not to be told everything. Ìý

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I totally disagree that trust is the most important thing.ÌýMy daughter didn't want to engage.ÌýWe have an extremely close family and we managed things how we always did with love, warmth and compassion. ÌýThe hospital doctors are not in touch with the families after the care has ended so they don't see the wreckage caused by the death of such a young person. I have found that sometimes the brutality of their approach leaves wounds after the event - AND how can they possibly know the effect of their decisions if they don't see the bigger picture. Surely it is the palliative care team that are in a much better position to see this. AND why aren't the doctors talking to families/to patients - how can they make these decisions in a bubble?

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There is a fantastic book, written by a Marsden psychologist in conjunction with a parent, which addresses the issues around child/teenage terminal illness/death. ÌýIt covers stories about the different beliefs that these young people have.ÌýAgain the message is loud and clear - follow the child and explore their beliefs.

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I am a former Sky News journalist and have worked as a communications consultant for the Department of Health. I am articulate, fearless where my daughter was concerned and able to challenge people in an appropriate manner. It was only through this that I was able to ensure that I worked with the right people to get the best death for my daughter. I fear so much for the patients/families who do not have these skills and do not know how to challenge the existing status quo. Where is their voice and how do they get heard? For some of them the only resource they have left is to dis-engage or to become disruptive.Ìý

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I was beyond enraged when I heard one of your panel saying that she forced a conversation on a young man about his funeral. He ended up in tears.ÌýHowever do we know that that is the right thing to do. He may have been consciously protecting himself from that discussion. I have covered many awful stories as a journalist and moved in and out of peoples' lives in tragic circumstances. Believe me you do not have any understanding of what it is like to have a child who is dying until you have been in that parent’s shoes.

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Your programme was excellent in that it tackled this extremely difficult subject. It did not however nearly cover the full story and I suspect some health professionals will see it as further endorsement that they know best and everybody should be treated according to a set protocol.

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Despite the DoH rhetoric about patient involvement it isn't being heard in this setting. Patients and families are dismissed as being too distraught to have anything useful to say. ÌýThis is simply not true. Of course we are distraught, beyond imagination, but it doesn't mean that we are not capable of rationale thought.Ìý

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Please allow us a platform. ÌýI would be very happy to talk more about his subject. Ìý

(Debbie Binner, Managing Director, Caremark, Sutton)

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Another excellent programme and series, it seems somehow strange to call this entertainment but it is compelling, thought provoking and yes entertaining.

(John Murray)

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Just to say what a superb programme I listened to today. Deeply thought provoking and considered programme making of the highest kind. Thank you for making the programme.

(John Radford)

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INSIDE THE ETHICS COMMITTEE –ÌýLung TransplantÌýTeenager

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TX:Ìý 29.08.13Ìý

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PRESENTER:Ìý JOAN BAKEWELL

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PRODUCER:Ìý DEBORAH COHEN

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Bakewell

A teenager’s view of life is of years rolling away into the future.Ìý When a critical illness strikes how far should rare medical interventions go to make that prospect possible and how and when do you tell them if it isn’t working?ÌýÌýÌý

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Welcome to Inside the Ethics Committee.

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This is the story of John.Ìý As a small child he has a slew of the usual medical problems but they don’t go away. His mother, Marie:

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Marie

He’d been about eight or nine and I used to notice that he lost loads of weight and then he’s kept getting ear infection after ear infection, he was in and out of hospital.Ìý And then we went to one hospital and he’s in there with an ear infection for like three weeks.Ìý And a doctor there said he had mastitis of the ear drum and then he was in hospital there, had an infection, had all his antibiotic – IV antibiotics, came out and then a week later he went back into hospital with appendicitis.

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Bakewell

Through his early years John continues to be in and out of hospital with diagnoses of ear infections. But after a couple of years one doctor suggests there could be something else going on.

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Marie

He’s got a chest problem.Ìý So they discharged him on antibiotics and then she said he had a bit of fluid on the lung and he had a collapsed lung.Ìý And we came home on the Friday, it was Grand National day, went and put a bet on and – for the kids – went – said come on we’ll take you to KFC, him and his brother, took them to KFC and he just said – Mum, I don’t feel very well.Ìý And I said – Oh eat your chicken, be – you know – just behave yourself – you know as a normal mum would do – taking you out for a treat.Ìý That was that and he went – No mum I just don’t feel right.Ìý And we just looked at him and we just thought he doesn’t look right, he just looked purple and he just didn’t look right.Ìý So right okay we’ll take him back to A&E but his heart rate – and that was really high – within five minutes of being there he just started coughing up loads of blood.

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Bakewell

John has a particularly serious version of a condition called pulmonary hypertension.Ìý The symptoms are shortness of breath, coughing up blood and swelling in the legs. As the disease gets worse it causes damage to the lungs.Ìý John’s mother is suddenly alarmed.

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Marie

I could have lost my son at the age of 11 in a matter of one day he’s telling me he doesn’t feel very well and then to the next minute being told he’s going to die.

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Bakewell

John urgently needs treatment. He’s referred to a specialist children’s hospital where he is seen by one of the transplant surgeon.

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Transplant Surgeon

He was referred for a lung transplant and it was obvious that he had quite severe lung disease and we didn’t have a medical therapy for it.Ìý And that’s why we put him forward.Ìý Our results after lung transplantation aren’t as good as we’d like them to be and they’re not as good as we get for other solid organ transplants.Ìý There are good medical reasons for that but what it means in practice is that we won’t put someone forward for a lung transplant unless we feel that we’ve completely exhausted all other treatment options with medicines etc., and that despite being on full medical therapy the child has a very poor outlook and we expect they won’t make it more than another couple of years.Ìý Those are the criteria by which we’ll accept someone for a lung transplant and this boy met those criteria.

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Bakewell

And he doesn’t have to wait long for new lungs.

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Marie

He went on the list on the 24th November and he got the call on the 28th November, so we waited four days.Ìý We were quite lucky to get – wait four days for a donor and we were told that they were a good set and that was fine.Ìý We had a lot of complications in the first [indistinct word] when he came round, he didn’t want to be brought round that quickly.Ìý He was on a lot of medication, learning to walk again, learning to talk again, learning how to breathe again because he always thought what he was breathing was normal when it wasn’t normal.

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Bakewell

John recovers well from this major surgery. He goes home and back to school, he passes his exams.Ìý But he isn’t living quite like a normal teenager.Ìý The transplant surgeon again:

Transplant Surgeon

There are a number of medications he had to take every day, most of them aimed at stopping his body from rejecting his new lungs and he had to take them every day without missing them at all otherwise he would get into trouble.Ìý The second is he had to monitor his health quite carefully, both with regards to any symptoms plus he had his own mini lung function machine at home that he was expected to use every day and let us know if there were any change in the recordings on that.Ìý He was not completely perfect at doing all of that but actually nobody is and I’d have him down as being one of the – definitely the more cooperative patients that we had and we were delighted with how he did the first few years.

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Marie

We thought that he wouldn’t pass his exams, I personally thought that he may have to do another – his last year again.Ìý Lo and behold me he passed his exams, he done really, really well, he got into college doing art and design.

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Bakewell

So John appears to be doing well until he and his mother go back to the hospital for one of his annual check-ups.

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Marie

Five years was coming up for his transplant, we went, as we call it, the MOT, to go and have his tests and that done.Ìý Our consultant came back and said she wasn’t happy with some of the blood test results.

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Transplant Surgeon

We noticed that his lung function was dropping somewhat and we looked for obvious causes of that, like infections or an acute rejection process and we couldn’t find either.Ìý And the diagnosis we made was a condition called Bronchiolitis Obliterans Syndrome, which isn’t fully understood, despite all the research we do, but we think it’s akin to a form of chronic rejection of the lungs.

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Bakewell

Once again John is becoming seriously ill. His new lungs have worked for a few years, but now they too are failing.Ìý What can the medical team offer him?

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Transplant Surgeon

We were left with a horrible choice then.Ìý We don’t have any effective medical treatments for Bronchiolitis Obliterans Syndrome and if it’s continuing to progress then it will be fatal.Ìý The only option at all that we have is to offer a second lung transplant and that in itself is a very big deal and it’s not something that we do often or do lightly.

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Bakewell

Right, it’s now time to hear what our panel of experts thinks about John’s case, they are Dr Joe Brierley, consultant of paediatric intensive care at Great Ormond Street Hospital; Deborah Bowman, professor of ethics and law at St George’s Hospital, London; Professor John Dark, consultant in cardiothoracic surgery at the Freeman Hospital in Newcastle and Dr Antonia Cronin, consultant nephrologist at Guy’s and Thomas’ Hospital.

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Right, let’s have some facts and figures so that we can get this case in perspective and I’m coming to you Professor Dark first of all.Ìý How many lung transplants are there in the UK each year?

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Dark

We’re doing about 200 a year at the moment.

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Bakewell

And how many of those are to children?

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Dark

Less than 10%, maybe 15 or 20.

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Bakewell

Now what happens when you have a lung transplant for a child because a child is growing, a small child has small lungs, how does that work – the availability of donors?

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Dark

The availability is a problem, the lungs grow with the child, we can often use lungs from small adults for children or we can even cut adult lungs in half and give them two halves of a lung, which is a very successful form of treatment.

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Bakewell

So what do you make of the case that you’ve heard so far, what do you think of John’s case?

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Dark

It’s, on the one hand, inspiring in that he had a successful lung transplant and returned to normal activity – went through school, went to college.Ìý On the other hand it’s a reflection of the fact that many of these lungs will fail in the medium term.Ìý The average survival after lung transplant used to be about five years, it’s now crept up to 10 or even 12 years, particularly for younger patients but is nevertheless limited and this case demonstrates that depressing fact that very often the lungs will fail again.

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Bakewell

Joe Brierley, what do you make of John’s situation here?

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Brierley

It’s a truly difficult area in that John’s seems to have very limited options that will lead to him having a long term survival.Ìý The tragedy of going through very invasive therapies, in terms of a lung transplant, to then go home to have some sort of normal life where a child goes through exams and then to get to the stage of life where he’d normally be thinking about maybe leaving home, developing, going to college and then the tragedy of the illness that’s afflicted him so badly coming back, it’s extremely difficult for John and his family.

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Bakewell

That’s very interesting because you raise the very issue that we’re concerned with at the heart of this story which is – you refer to him as a child which of course he is at the beginning.Ìý Deborah Bowman, he’s growing, so we’re talking about medical treatment happening to a child but also beginning to affect someone who’s going to be an adult.

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Bowman

Absolutely and I think in many ways the adolescent, broadly speaking, phase of life is probably one of the most challenging in terms of ethical decision making because people are becoming independent, they’re often very consciously becoming independent.Ìý But there is a sense, I guess, that we still feel that young people are vulnerable, so the extent to which we balance protecting their interests, supporting them in making decisions that we can live with is really one of the most contested areas of medical ethics.

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Bakewell

What sort of ailments is a lung transplant a solution to?

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Dark

A range of conditions are treated by lung transplants, they are patients who’ve reached the end stage, who don’t have any other opportunity, who are going to die without a treatment.Ìý About 20-25% of the patients we treat have cystic fibrosis, they’re often young adults, they do particularly well.Ìý There are older patients with lung fibrosis, with emphysema and then maybe 10 or 15% are like this patient with pulmonary hypertension.

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Bakewell

Pulmonary – can you give us some more detail about pulmonary hypertension?

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Dark

The – the blood vessels in the lung narrow down for reasons that are unclear, so the pressure needed to pump blood through the lungs becomes higher and higher and eventually the right side of the heart – the right ventricle, the part of the heart that pumps blood into the lungs – fails.Ìý It can often be treated in the short term by drugs, and in fact the drug treatments have improved enormously over the past few years, but a proportion of patients remain resistant to drugs or run out of response to the drugs and then they become candidates for transplant.

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Bakewell

Antonia, what do you make of John’s case so far, the story that you’ve heard?

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Cronin

So for me part of what comes out of this story is this huge transition, going through a process whereby with John at the centre a very difficult decision making process, there’s been a lot of control from a very young age and it’s now a shifting focus from controlling the decision making process to allowing him to assume some sort of responsibility within that decision process and supporting it, as well as the medical team and his parents and his family obviously taking on a very important role, quite rightly so.Ìý But I can see that, for me, part of the decision making process about whether or not he has a second lung trans – has to be the fundamental question of will this benefit John, will actually having a second transplant be of benefit to him in the short, medium and long term?

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Bakewell

Well let’s – how difficult is a second lung transplant going to be?

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Dark

There are technical difficulties in taking the old lungs out, which are surrounded by scar tissue and implanting the new ones but we have similar technical difficulties with many of the patients coming for transplant.Ìý On the other hand some patients who’ve already had a transplant will have had side effects from the drugs they’ve been on, their kidneys may have been affected, they may have lost a lot of weight.Ìý A lot of the outcome depends not only on the skill of the surgeon but how well the patient is in terms of his other organ function when he comes for the transplant.Ìý We should not be scared just by the technical difficulties but we need to look at the whole picture.

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Bakewell

Joe, it’s very interesting isn’t it, because in your world you are dealing with the child who is ill and that means dealing with the parents and we’ve heard John’s mother is very concerned and a little bit at sea about what should happen, how do you help parents make judgements?

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Brierley

I think the very first thing you must always do is give them time and the time of the most senior people in the team – the transplant surgeons, the transplant physicians – and work with the parents but also John of course, he’s – I couldn’t quite work out whether he’s 15 or 16 at the moment, whether the law would be slightly different across those ages but ethically children have a right to be involved in their healthcare and have things explained to them in the way that they can understand.Ìý So a lot of time would be spent with the family, with the individual who’s going to go through this treatment, who we can’t forget is John.

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Bakewell

That’s a very – it’s – that’s a medical judgement, it’s also a human judgement too of course Joe but Deborah, as a mother, I mean you believe, don’t you, that you have ownership of your child’s health, indeed you have legal responsibility for it, you’re liable for any shortcomings and suddenly you have to begin to hand that over, isn’t your decision at this stage?

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Bowman

It’s really difficult because I think actually – and it’s terribly easy to say this in a studio and so much harder to do it in life but actually part of your role as a parent is supporting your child to become independent, to get to know that person and that they’re not merely an extension of you.Ìý You see that with sick children really quite early on – they become expert in their illness and the experience of their illness and however close and loving a mother is I think you have to recognise that.Ìý And most families navigate that and negotiate it but it is difficult, we all know it’s difficult to let go of our teenagers in other contexts, so when it’s something as life altering – potentially life ending – as this it’s not surprising, it’s borne of love, I have no doubt of that but I do think part of your responsibility as a parent is about supporting your children in making independent decisions that are right for them.

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Bakewell

What are the ethical issues here Antonia?

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Cronin

I can’t keep away in my mind from wondering whether this – doing a second lung transplant for John is going to be a good decision.Ìý And it’s how much he should be involved in that decision – in that decision – and how much the medical team should also influence that decision.Ìý So there comes a point at which you might think well should John have this transplant, does he actually need the medical selection criteria to have that transplant?Ìý So in a way his involvement in the decision making process is partly ethical but also in order for him to actually be a suitable candidate, in my view, for a transplant part of this decision making process, before we reach an ethical discussion, has to be whether or not he’s medically suitable for a second transplant.Ìý For instance in the story that the transplant surgeon was saying he did allude to the fact that there were perhaps issues related to medication adherence.Ìý Now that isn’t something that necessarily would be an absolute contraindication to John having a second transplant but it would be certainly something as a clinician that one – the entire multidisciplinary team would want to know more about – was that…

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Bakewell

Yes well he did suggest that the child, John, had been wayward to some extent but to a very small extent and people are always negligent to some extent.

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Cronin

Effectively there is a crisis of organ shortage one wants to know that the organs that are available are being allocated to the best fit, as it were.

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Bakewell

Well this is of course another huge moral issue which you’ve got a short resource, you’ve not got many opportunities to make the most of donor organs – I know there is a big campaign to get more donor organs in society – but nonetheless in the short term at the moment organs are in short supply.Ìý How on earth do you make judgements?Ìý John.

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Dark

We didn’t use to do many redo transplants and I think now we have a realisation that we know what are the risk factors and what are the predictors of good outcome in redo transplants and we’re doing more redo transplants.Ìý And if we have situation where the outcome is likely to be as good as for a first time transplant it’s illogical not to offer the re-transplantation because you have the patient who has reached again the end stage of his disease and is going to die without the intervention.Ìý The other interesting point is this issue of adolescence and their so-called compliance to medication.Ìý On the one hand the commonest cause of organ failure, certainly after cardiac transplant, in adolescence is failure to take the medication properly.Ìý But on the other hand we all know that adolescence is a phase and behaviour at the age of 14 is likely to be very different from behaviour at the age of 18.Ìý So our approach tends to be give them the second chance.

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Bakewell

It’s heart-breaking to think that a child might put their own recovery and future life in jeopardy by some casual neglect.Ìý What a dilemma that is.

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Bowman

It is a dilemma but I mean it’s interesting as I’m listening to reference to medical criteria I absolutely accept that but I think that there are moral things embedded within medical criteria and there are still moral obligations upon the clinical team to articulate the source of those criteria – where do they come from, are they robust – actually thinking a little bit about on what basis you’re making a decision.Ìý But also communicating that to the family so that they understand – so that they understand the basis on which decisions are being made.Ìý So I think even if you’re saying hang on a minute does he meet the criteria and before – we have to put that before the ethical question, I actually think discussing the medical criteria and reflecting on them is in itself a moral decision.

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Bakewell

Where do medical criteria come from – tell me.Ìý Joe?

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Brierley

In terms of how much these things are based on evidence, looking at how likely a transplant is to succeed I would suspect in terms of compliance with medication and things we’ve talked about very limited actually.Ìý But in terms of trying to get a very, very finite resource and give it to the person who will benefit most from it there needs to be some sort of assessment of the likelihood of success.Ìý Now I – looking back at John’s story however the transplant person said he’s actually at the higher range of people in terms of compliance at that age, so I might be missing why there would be any suggestion that he’s unlikely to do as well as other children of the same age with a transplant.

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Bakewell

But given what you’ve all told me so far about the availability of these organs, about the difficulty of removing the first transplant and so on, I mean is there any sense in which John’s being experimented on to see how far things can go?Ìý John.

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Dark

No not at all, I think we are interested in what is for John’s best benefit within the setting of all the patients we have on our waiting list.Ìý So we have a duty to him and we have a duty to all of our – all of our listed patients, all those patients referred to us.Ìý For any transplant there’s a – within a group of transplants there’s a spectrum of the risk involved, there are the very straightforward patients – no other organs involved, beautifully clean chest, very straightforward patient – and then there are the high – then there’s increasing levels of risk and at some stage the risk becomes unacceptable in terms of what you owe to all the other patients on the waiting lists.Ìý At the moment we have a mortality rate on the waiting list of somewhere a little over 20% for lung transplant patients in the UK and those are just the patients we’ve put on the waiting list.Ìý It is – it is not fair to all of those other waiting patients to list somebody who’s outrageously risky, whose chance of still being there in a year or five years or 10 years is very – is very – is very low, we want to get the best possible value.Ìý But within that group there will be a spectrum of risks.

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Bowman

But John you said one year, five years or 10 years and that – those are three quite different timeframes and yet you describe them as we don’t want to do this for someone who’s there one, five or 10 years – do you distinguish between one, five and 10 years and if so on what basis?

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Dark

I think – I think you distinguish in terms of your chances of reaching those milestones.Ìý If the average survival after lung transplant is now about 50% at 10 years, particularly say for younger patients with cystic fibrosis, then to transplant somebody with only a 10% chance of living that long for a variety of other medical reasons or because of the risks of the operation itself would be regarded by the team as unacceptable, who have, as I say, a commitment to all those other patients who are waiting.

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Bakewell

Okay, so who should be making the decision about whether John is given a second transplant, who should be making that decision?Ìý Joe.

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Brierley

In terms of separating the facts and values you’ve heard some of the scientific arguments about the chance of success.Ìý In terms of treatments that – I don’t know what other people feel – how innovative this treatment might be for this young man, if we’re looking at using high intensity treatments that have a high risk we would certainly have a decision making process involving all the teams – we’ve heard about using the transplant teams, the social workers, other people involved with an individual patient’s care but a group of people coming together, whether you call it a clinical ethics committee, whether it’s actually a transplant ethics committee, someone who sits down and goes through all the various aspects of care and tries to come to a consensus.

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Bakewell

Along with the mother?

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Brierley

Along with the family and the child.

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Bakewell

And with the child?

Ìý

Brierley

Yes.

Ìý

Bakewell

Is that a general view?

Ìý

Dark

I think there are two stages to it – there’s the acceptability from the point of view of the whole team and as Joe says it is a very broad team and then the final decision, if the team regard that offering a transplant is acceptable, the final decision is going to lie with the patient and the family.Ìý There are patients who will say no, there are patients who feel they’ve been through too much and don’t want to go through it again, even though the medical team has come to the conclusion that it would be a reasonable thing to do.Ìý But I think – I think we’re also in a situation where sometimes a medical team say this is outrageously risky, the chance of survival is vanishingly small, this is not something we should offer and under those circumstances it’s – there’s no point in involving the family with that discussion, I don’t think.

Ìý

Bakewell

Let’s find out then what happens next.

Ìý

John goes onto the list for a second lung transplant and he doesn’t have to wait long.

Ìý

Marie

When he got the organs we were quite shocked only to wait a few days again.Ìý I was actually here when I got the call at half past six in the morning to say could you come back because – you know we were preparing to come home with oxygen just for weekends and things like that.

Ìý

Bakewell

John is the only person in the country who matches the donor lungs. On arrival at the hospital he’s met by one of the nurses from the transplant team, she will stay close to him throughout the treatment.

Ìý

Nurse

You could see he was scared but he was trying to be the brave one, like he wouldn’t go to theatre until he had spoken to his little brother, it was important to him to speak to his brother and his brother was pulled out of lessons and – just so they could talk.Ìý I think it must have been very difficult for him but he just wanted to live, that was all he wanted was to live as much of a normal life as you can at 17.

Ìý

Marie

He went down at 10 in the morning, came back at two because they had trouble with the bleeding that he had.Ìý He had major bleeding.

Ìý

Bakewell

John was in the operating theatre for 15 hours. A second time lung transplant is a very serious operation.Ìý The first transplant lungs stick to the chest cavity and it’s difficult to line up all the blood vessels.Ìý The transplant surgeon:

Ìý

Transplant Surgeon

It didn’t go any better or any worse than we would have predicted I guess because we knew it was going to be tough and it was tough.

Ìý

Nurse

I think his heart stopped that night more than once and he was incredibly sick for that first week probably, very, very sick.Ìý And then I think as the days went on he stabilised a little bit but he was still nowhere near out of the woods.Ìý So they removed the upper lobe of his left lung, of his new lungs, to see if that would help improve his ventilation and get him off the ventilator ultimately which I think it did improve things but it didn’t get him off the ventilator and they actually decided to put a tracheostomy in to make it a bit more comfortable – it’s slightly easier to breathe out of a tracheostomy than to have a tube in your mouth for months on end.

Ìý

Transplant Surgeon

He was awake and he was able to talk and tell us what he wanted but he just couldn’t breathe on his own.

Ìý

Bakewell

Now it’s some months after the transplant operation and John is still in the intensive care unit. He has a tube in his throat to allow him to breathe but then other things begin to go wrong.

Ìý

Transplant Surgeon

It became obvious to us when we were a few months into this course that this boy didn’t just have a lung problem though because his bowel wasn’t working properly so he couldn’t absorb food properly and also his kidneys had stopped working properly.Ìý So unfortunately we were in a situation where we couldn’t move him off the intensive care unit.

Ìý

Bakewell

As his kidneys are no longer working John is on dialysis.Ìý The medical team is now very concerned about John’s prospects.

Ìý

Transplant Surgeon

The doctors and nurses looking after this boy are now of the view that his chance of ever getting off the intensive care unit is extremely small and some of them were of the view that it was effectively zero.Ìý The treatment that we were putting him through was at best uncomfortable and I think some would have argued it was – it was painful.Ìý So some of us were of the opinion that really we weren’t doing what was in this boy’s interest anymore and that we should stop this treatment.

Ìý

Bakewell

The tragedy of this case is that the patient is only 17 years of age, so recently a child, so soon to be an adult.Ìý This is a problem for his medical team – in what terms do they talk to him about his situation?

Ìý

Transplant Surgeon

Normally in a paediatric hospital when you’re in that position the child that you’re looking after is so young that the decision you have to make has to be around the parents’ wishes, rather than around the child’s wishes.Ìý And also often in the intensive care unit the child isn’t really conscious, so you can’t have a conversation with them even if they are older.Ìý This was a very unusual situation in that we effectively had an adult on our intensive care unit and it was an adult who was awake, able to understand what was happening to him, able to understand the discussions we had with him and able to express an opinion of what he wanted.Ìý That was a difficult situation for our staff.

Ìý

Bakewell

So John’s medical team take their concerns to the clinical ethics committee. ÌýThe committee’s chair:

Ìý

Clinical Ethics Committee Chair

They were uncertain about a number of questions about how to care for him well now.Ìý And there were I think one or two of the clinicians who were just holding on to some gossamer thread of hope that something might be done and that he might get more time.Ìý And it’s at that stage often that cases come to a consult because clinicians want to do their very best to do the right thing for the patient but there may be slight differences of view and they’re just often very perplexed but also they – the young person, the family, all – want this child to live and that makes it very hard to both give up hope and work out what’s the right thing to do.

Ìý

Bakewell

Right, we go back to our panel now for their views on the case as it is now.

Ìý

John, is it a surprise that John isn’t doing very well after the second transplant?

Ìý

Dark

They certainly are technically challenging operations – the bleeding we heard about, difficulty, the prolonged stay in the intensive care unit are not…

Ìý

Bakewell

But 15 – 15 hours in the theatre?

Ìý

Dark

It happens from time to time but we’re dealing with a young patient with a lot of potential to recover, at least to the early stages.Ìý So the story is not entirely unpredictable, indeed it’s part of the overall package of risk that would have been discussed with the patient before he was put back on the waiting list for a transplant.

Ìý

Bakewell

Joe, what’s your view of the situation now?

Ìý

Brierley

I think as an intensive care consultant we often look and see about the chance of recovery and certainly as John says someone having a long time in the operating theatre you might have a rocky course but this young man’s having a more prolonged problem with multiple organ failure – his kidneys haven’t worked for months, his bowel isn’t working – and really the key reason he came in, post lung transplant, he remains attached to a breathing machine via a tracheostomy, so his lungs aren’t working. So he is stacking up problems.Ìý And I guess in terms of the clinical team they don’t see something that will change that, there seems to be only a slow, slow or quicker deterioration to this boy’s ultimate death.Ìý And as an intensive care doctor if you feel you’re not getting someone better then you have to really wonder about what you’re doing.

Ìý

Bakewell

Now Antonia obviously the child, boy, his body is packing up in many ways and he’s losing the use of many of the organs so where are we not only medically but ethically here?

Ìý

Cronin

Well it seems the tragedy of this story is at the outset of agreeing to undergo the second lung transplant was a hope of saving life and having an improved quality of life.Ìý And here we are months down the line with a very different situation and trying to keep somebody alive who has multi-organ failure.Ìý And it comes to the point when considering what’s in an individual’s best interest, what that person themselves might consider to be a quality of life that they would want to live is reconciling to yourself when you have put so much effort into making things better at what point – the point at which you must agree to decide upon this is no longer in this person’s best interest.

Ìý

Bakewell

It’s interesting because you’ve spoken about you must try and do what the patient wants and we’ve heard that you must listen to a child, a child becoming an adult, and John himself is saying he just wants to live, he wants to live almost at any price and his parents are desperate that he should stay alive.Ìý How do you involve them in the nuances of the judgements that you as a medical team might be making?

Ìý

Cronin

I think it’s very difficult, I think I’d go back to Deborah’s point earlier in the programme about involving and in communicating to the family at each stage along the way the benefits and dis-benefits of the processes and practices and the medical treatment that is in place.Ìý I think the real difficulty here comes with reconciling that death might be in a person’s best interest in this setting, where actually you may make a decision to withdraw some form of treatment because that treatment that you’re providing is futile and is not providing any source of benefit to that individual and really at that point you are making a decision that – that death is inevitable in those circumstances.

Ìý

Bakewell

Now we’re getting the team understand among themselves that John’s chances are rare and rarer, what are the ethical rules governing when you tell someone and how you tell someone who is only just an adult that they’re dying?Ìý Deborah.

Ìý

Bowman

The ethical rules implies a certainty that probably doesn’t exist, it’s a contested area, particularly with young people. However, my view is that you involve people really from quite a young age as honestly and openly as possible because for me – and it’s a personal view – truth and trust are at the heart of the relationship between clinician and patient and family, truth affords people dignity, there’s something about the respect and the value of telling the truth.Ìý However, it’s impossibly difficult – it’s impossibly difficult and I wouldn’t begin to judge those that avoid the truth and there are many, many reasons – there may be good reasons, there may be good arguments for not telling John and I’m guessing the trope, if you like, of the hope, the miracle, the against the odds recovery, that’s so powerful.Ìý And it’s interesting to me that the clinicians or some of them express that too – we are all – we all want to believe it.Ìý But I think the difficult truth has to be faced, I do.

Ìý

Bakewell

But if the truth is that he is probably not going to survive why do we need to tell him?Ìý Joe.

Ìý

Brierley

Well if you partly – Deborah’s answered that in terms of the honesty in forming of relationships and if you are not going to be honest and tell people things how are they going to trust you because what else aren’t you telling them?Ìý I think it maybe that John has things he wants to do, we have children actually far younger than John that we have discussions about them dying with the individual, children with oncology, other problems, I guess the difference here it’s slightly unusual to be on the intensive care unit, as I think the transplant physician said most children are asleep on ventilators, on drugs, but John is awake and he can have those conversations.

Ìý

Bakewell

You said you’d had conversations with children younger, at what age can children take on the concept of dying?

Ìý

Brierley

I think there’s – there’s a different answer depending on the child’s circumstance, so children who have had chronic illness, such as John, will have a much more advanced understanding of their illness and possibly of mortality, so eight or nine or 10 year olds who maybe have been through several cycles of leukaemia,Ìý bone marrow transplants, will have a ready understanding of what it is to die, they may have seen children die on their ward, not actually die but know that that’s happened to them.Ìý Whereas a child who’s come in and had a severe traumatic brain injury who was at school yesterday and the age of 12 may have a very limited understanding.Ìý So it’s context specific but again given time and support and understanding most children will come to an understanding I’d have said at the age of 10, 11, 12.

Ìý

Bakewell

Isn’t this very subjective John Dark, that wanting to tell children because of the nature of trust and help them come to an understanding – these are very grown up concepts.Ìý Aren’t we all imposing a set of adult judgements on children?Ìý You’re shaking heads all round this table.

Ìý

Dark

This 17 year old, as Joe has already illustrated, is a grown up boy, he’s been through an awful lot.Ìý He wanted to say goodbye to his younger brother before going into the operating theatre, he had insight, he had perspective.Ìý We need to keep his trust.Ìý In practice somebody dying on an intensive care unit under these circumstances is going to die because we’ve set a ceiling to what we will do.Ìý We won’t restart the dialysis machine.Ìý We won’t restart the ventilator.Ìý And he needs to be – he needs to know that that’s the plan.

Ìý

Bakewell

Why does he need to know?

Ìý

Dark

Because you lose his trust if you don’t do what he’s expecting to do – to restart the kidney machine, to restart the ventilator.Ìý And often the patient will surprise you in that he is relieved or expecting you to have that conversation.

Ìý

Bowman

I think there’s something here – this fear, probably, that we’re not attending to for as long as we’re not talking to him about dying.Ìý My sense is that this is a young man for whom this has been a – if not an ever present, certainly a present feature in his life and unless we talk about death and dying we cannot care properly for John and caring for John involves attending to that, as much as it involves the ventilator, the trachy etc., it’s really important and we can’t provide that bit of care until we’re honest with him.

Ìý

Bakewell

Joe, the word that comes round over and over is that you must keep the trust of the patient, I just wonder in what sense trust is therapeutic, I mean is it part of the treatment?

Ìý

Brierley

The trust of the patient, the trust of the family and your working with this family will continue after this child has died, this young man has died.Ìý The way you treat children today informs the rest of your team how you will treat children tomorrow, there’s a way of good practice continuing.Ìý I want to add two things if I may.Ìý The first, one of the things you gain by being honest with this young man is to give him the opportunity to perhaps go home – we transfer children home from the intensive care unit who are dying and withdrawn, stop therapies, at home if it’s important for that child to die in their home environment.Ìý We do that not infrequently.Ìý The second thing is however things go for this young man and this family there are many, many different teams involved here – there are surgeons, transplant surgeons, nurses, ICU teams, transplant teams – and I think in terms of setting up clear communication with this young man I suspect he could quite easily be overwhelmed by many different people.Ìý So one of the ways you may best go forward and establish trust is by having a single couple of points of communication with him and the family and establishing that relationship will enable these difficult conversations to happen in a more trusting fashion I think.

Ìý

Bakewell

Well clearly the medical team, wanting to have what you might call a good death, it’s an old fashioned phrase but I think we know what it means, a good death. Is the withdrawal of dialysis an easeful death? Antonia.

Ìý

Cronin

I think a considerable body of experience has built up whereby decisions to withdraw dialysis can be managed using renal palliative care and symptoms and distress can be very straight forwardly managed in a contained environment.

Ìý

Bakewell

Right, well you are, as it were, the ethics committee, I want to know what you would recommend when they come to you and say what do we do next.Ìý Antonia.

Ìý

Cronin

So I think the consensus that we appear to have reached is that we want to continue to support the family and we want John to be involved in the decision making process and we want to support his care and the withdrawal of his care so that he can die a dignified death.

Ìý

Bakewell

So you would tell him and you would talk to him?Ìý Deborah is nodding.

Ìý

Bowman

Yes I would, I don’t think it would necessarily be one conversation, I suspect this is a process, in fact I’m sure it’s a process.Ìý And I think it would involve huge skill, it probably involves a great deal of sadness on the part of the team as well but I do think there has to be an honest discussion, probably over several weeks and I would like to see him moved to supportive or palliative treatment – care.

Ìý

Bakewell

John?

Ìý

Dark

Precisely that discussion is held by this small group of people that Joe has already alluded to.Ìý The family need to be in agreement with what’s going to be happening, they need to be fully informed but the duty of care eventually is to the patient himself.

Ìý

Bakewell

And Joe.

Ìý

Brierley

I agree with everything that’s gone before me.Ìý I’d even go a little bit further than Deborah – we would and what ought to happen here is to bring the palliative care team onto the intensive care unit to talk to this young man and his family and the staff.

Ìý

Bakewell

Thank you.Ìý Well now we go back to John’s story to find out what actually happened.Ìý His mother tells how she feels pressured to tell him that he is going to die.

Ìý

Marie

The way that I explained it to him was that you know the way you are, the trachy, they’ve said if they were to resuscitate you you could be worse than you are now and what would you want.Ìý His response was well if they was to resuscitate me and he just said would I be able to go to college.Ìý And I said well you could be like you are now for the rest of your life and he went – Just let me go.

Ìý

Bakewell

The nurse who knew him well goes into details few of us could bear to consider at such a young age.

Ìý

Nurse

His parents didn’t know how to broach the subject of his funeral, they didn’t know if he wanted to be buried, want to be cremated.Ìý And his parents are divorced and I think their opinions were different.Ìý And so I said to him, I said – I’m going to make you cry but I have to ask you these questions.Ìý And he did, he cried his eyes out but he answered them.

Ìý

Bakewell

In a matter of weeks John’s health deteriorates

Ìý

Nurse

His colour changed, he had very, very poor profusion in his legs, he couldn’t get out of bed, he didn’t even want to sit up.Ìý But I think with big discussions with doctors they decided that the best thing to do was to turn off the dialysis because they knew eventually that his body wouldn’t cope with all the fluid on board and hopefully it would be the most comfortable way for him to pass away.

Ìý

Bakewell

The dialysis is switched off and the day comes when John dies: his parents are with him.

Ìý

Marie

I just felt there was – something wasn’t right.Ìý So I took my boots off, so he let me climb in the bed with him and I was crying and I just said – If you’ve had enough – I went – and you can’t stand it anymore – I said – just let us know.Ìý I said – Everything’s done – I said – you’ve planned all your funeral, you’ve planned everything, there’s just me and dad here.Ìý And we both just bent down, gave him a kiss and the next minute we both stood up and as we stood up this face just went a different colour and it just felt like this thing just came out of his body and just took him and it was like a relief on his face.Ìý And I said – He’s gone.

Ìý

ENDS

Ìý