大象传媒

Downloaded from

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

听

听

INSIDE THE ETHICS COMMITTEE

听

TX DATE:听 09.08.12听 0900-0945

听

PRESENTER:听 JOAN BAKEWELL

听

PRODUCER: BETH EASTWOOD

听

听

Bakewell

When a child is born with a severe medical condition what lengths should parents and doctors go to keep him or her alive? And is it ever appropriate to withdraw treatment?

听

Welcome to Inside the Ethics committee.

听

Recent progress in medicine means more and more situations arise that involve difficult choices:听 children born with illnesses that will shorten their lives can now be kept alive but for how long and who decides? This programme tells of two different children.听 First we hear of Ben, from his mother and his doctor.听 His story begins eight years ago.

听

Ben's mother

Just normal everyday baby until we get to about three months old and he don't want to sit up, then you start to think that there's something the matter and then he just started, as he was getting older, a couple of nights he'd go to bed and he wouldn't wake early in the morning, he'd just keep sleeping.

听

Doctor

Ben had been born about 10 years after an older brother who passed away at the age of 21 months and this little boy was known to have a muscle disorder and although initially we weren't sure about it, it soon became apparent that he was suffering from the same condition.

听

Ben's mother

And then one Sunday morning he was just motionless and he started looking really blue.听 So we took him off to the hospital and before we got to the hospital I said we're going to have to pull in, I said he's not with us, I'm losing him.听 And we phoned an ambulance, so off we went to A&E and while the nurse is asking us questions about him he started to go off to sleep again and go a bluey colour and then that was it, it was just - it all break loose from there.听 The next time we saw him he was in intensive care.

听

Bakewell

Ben is diagnosed with a rare, genetic condition - nemalin rod myopathy.

听

Doctor

Now nemalin rod myopathy is a genetic mutation but it's not a single mutation and it isn't a single disorder, giving rise to a whole range of severity of illness.听 So in the extremely severe end you could have a child who's born with extremely weak and virtually couldn't breathe from day one, chance of survival beyond a few months is virtually non-existent but at the other extreme of the condition a person can live to adulthood with a bit of weakness.

听

Bakewell

And there isn't a way to know definitely where Ben is on this scale.

听

Doctor

So by the time he came to us he couldn't control his head very well, he could move around by lying on the ground and pushing himself along with his legs but anytime he was put vertically he sort of flopped all over, which is just a sign of very weak muscles.听 And we were sort of using the fact that his brother had only survived for 21 months to give us a rough measure of how severe we thought his condition was likely to be.

听

Bakewell

Ben is now two and a half. He has a chest infection and the plan is to treat it and get him well enough to go home. He needs a tube put into his windpipe, through his mouth and connected to a ventilator to help him breathe, the tube is very uncomfortable and painful so he needs to be sedated. The hope is that he will be weaned off the tube, use a ventilation mask, then breathe on his own and finally go听 home. But this didn't happen.

听

Doctor

Unfortunately what happened was that he went back on the mask ventilation but very rapidly it was clear that there was just not enough support.听 As soon as we took him off the ventilator he was struggling to breathe so it wasn't as though it was his lung was the problem, it was the muscles that help him to breathe that was now causing the problem.

听

Ben's mother

They always used to take his tube out nearer the night and put him on this mask at night.听 He used to fight really hard with the mask, I mean his toes used to go into the bed because he'd be sort of fighting.听 So I wanted to know then what was the next best thing that we could do.

听

Doctor

So what we can do in this circumstance is put a plastic tube into the lungs but through a hole in the neck, this tube could be connected to a ventilator, he could be connected to the ventilator, we could use this tube to suck out all the secretions and things and then he would not need to be sedated and he could be more awake.听 But the difficulty here was this was then moving to a point of no return because we had gone down the tracheostomy choice then we would not be able to remove the tracheostomy in the near future because it was a sort of one-way - one-way point.

听

Bakewell

And it was one of the medical team who suggests that a tracheostomy might be what Ben needs.

听

Ben's mother

Just be hearsay and it was a nurse that said - have you not thought of asking for a tracheostomy - which I did, whereupon they said it's a big step and I did say, I don't care what you do with him, you get him as I can take him home and I will do the rest.

听

Bakewell

But Ben's doctor is doubtful that this is the right course of action.

听

Doctor

I pointed out at that time that a tracheostomy was something that wasn't commonly done in somebody with a degenerative problem and the nightmare scenario, apart from recurrent infections and acute pain, was the fact that if the weakness progressed to such a stage that Ben was unable to move at all and perhaps the weakness continued to progress to where he was no longer able to move his head or his face or his mouth or at absolute worst case scenario where he couldn't even open his eyes we would have a situation where we were able to keep him alive but we would have somebody whose quality of life was going to be possibly worse than death.

听

Bakewell

His mother is desperate to have everything done to keep him alive.

听

Ben's mother

He couldn't take obviously because he'd got the tube in but he was helping the play specialist, even though he was intubated.听 And he was intelligent.听 Every mother loves their children and I begged him to give him a chance.

听

Doctor

The difficulty here was to try and predict the severity of his variant of his nemalin rod myopathy and I recommended that I thought that at that time this was not a pathway we should go down.

听

Bakewell

Now it's time to hear what our panel of experts think and they are:

Dr Paul Baines, Wellcome Trust Clinical Ethics Fellow; Professor Deborah Bowman, Professor of Ethics and Law at St George's Hospital, London;听 Professor John Wyatt, Emeritus Professor of Ethics and听Perinatology at University College London and Sally Flatteau Taylor, founder and Chief Executive of the Maypole Project that supports children with life-threatening听 illnesses and their families.

听

Well John Wyatt, a tracheostomy isn't a panacea is it?

听

Wyatt

I've looked after a number of babies with a tracheostomy and unfortunately it solves one set of problems and creates another set of problems and in particular the amount of nursing care, which babies with tracheostomy require in terms of very repeated suctioning, the need for various apparatus to be able to protect the airway and so on are very significant and also there are real worries about causing the pain to a child through the suctioning - I've heard it described as having a suction catheter in your trachea is a bit like a knife being put down your windpipe.听 So it's not a soft option and therefore balancing the benefits and the burdens of treatment in a case like this is pretty significant.

听

Bakewell

Right, so it isn't - it isn't a simple decision and it raises, Deborah Bowman, it raises a question of the value of life, the quality of life, doesn't it - how can you judge what a quality of life is for a two and a half year old?

听

Bowman

I think it does raise that question, I think it raises lots of questions.听 I think how you judge quality of life is the perennial question really when it comes to any situation where you're trying to make decisions on behalf of someone who can't make those decisions for him or herself.听 And a sick child is clearly one of those people.听 I think the other issue, that we've heard already, is that well motivated people - parents and clinical teams - can have a different view both of what's appropriate and what might constitute a reasonable quality of life.

听

Bakewell

So how do you know what a child wants, how do you John?

听

Wyatt

Well I think it's very important that all of us caring for children are trying to do what's in the very best interest of the child themselves, rather than the best interest of the parents, the best interest of the hospital and so on.听 And therefore it's critically important to actually watch the reactions of the child and see how they're responding when they are being cared for - are they responding with their parents, with care givers and so on.

听

Bakewell

Is that something you're aware of Sally when you deal with children in this position?

听

Flatteau Taylor

Yes we've worked with a child - and they referred to play specialists - we'd work with the child to watch their reactions.听 But I think it's also important that the child is - it is the best interests of the child but the child within the family and within the relationships with the family.听 So the quality of life is around the child but also the family and everyone's situation.

听

Bakewell

Paul Baines, the doctor there used a really terrifying phrase which said that it could lead to a life worse than death - that's a horrendous prospect.

听

Baines

Yes and it's possible to imagine some lives that are worse than death and it's easier if you see that you make that choice for yourself or we're used to imagining adults when offered perhaps chemotherapy for tumours saying I prefer a shorter albeit less than pleasant life than a longer one marred by the side effects of chemotherapy.听 The one thing I'd say about all of this discussion is it is really difficult to imagine life through the child's eyes and we've all got to try and concentrate on what it's like from the child's perspective and imagine what we're doing to them and try and take that perspective through it.

听

Bakewell

How do you do that because this phrase the best interest of the child is a sort of adult phrase, isn't it, we all think we know what it is but does the child know what it is?

听

Baines

We all say best interests - I think it's very difficult to understand what we mean by best interests and usually, again for adults, we let adults choose their own notion of what's in their best interests but we impose it on children, we say you'll turn the X Box off and you'll go to school and that's a trite example.听 But the usual use of best interest is to let adults choose their own best interests and there's a broad disagreement about different ways of looking even at what best interests are and we accept that for children we may do unpleasant things for them for benefit in the longer term.

听

Bakewell

Deborah Bowman, the whole issue for a child born this ill is what may happen as they deteriorate; you make a judgement now about what might happen to them in the future.

听

Bowman

Absolutely and you're making those judgements in the context of uncertainty.听 I think - I suppose I think there are several things - it's partly about the judgements you are making and they might be divisible, so it might be that you're making judgements about immediate care and not necessarily thinking at this stage about medium and longer term care.听 But as the doctor pointed out in medicine those things are inextricably linked.听 I think I would just say though that actually we have heard that there's really quite careful attention being paid to this child, we heard from his mother about his toes in the bed and we heard about his interaction with the play therapist and I think there are multiple ways of judging a child's best interest, none of them is perfect, none of them is failsafe but you're likely to get a better result probably if you look at the whole picture and that's clinical plus other aspects.

听

Bakewell

John.

听

Baines

One of the terrible dilemmas that this case particularly arises is that where you have muscle weakness the very precise signals which we so much depend on as we look at the child, looking for signs of pleasure, of pain, of distress and so on that the effect of the disease process is actually to weaken and ultimately abolish those signals and that then creates an extra dimension, a problem of trying to put ourselves in the position of the child when it's excruciatingly difficult to do so.

听

Bakewell

Sally, to what extent when you care for the parents and the children with your project do you feel that the best interests of parents have to be served as well?

听

Flatteau Taylor

Very much so.听 I think the parents are always - also the expert on their child, so these signs they're seeing on a daily basis which in hospitals sometimes some of the different symptoms and signs can get sort of covered.听 The parents - they're part of a unit and the child is so young that it's important to see the whole unit.

听

Bakewell

It must be hard for parents because they obviously feel that the best interests of their child is to stay alive - how can they not?

听

Flatteau Taylor

They do but if the team around them are empathic and able to really communicate with them they're realistic as well.听 Hope is really important and on-going hope but hope changes as the illness changes.

听

Bowman

And in fact I mean there's not a lot of empirical work but the empirical work that's been done with parents asking them about these awful treatment decisions suggests that most parents actually don't want anything done at all costs.听 There's a very strong sense of benefit and burden and of a dynamic situation, a situation that's changing.

听

Bakewell

Well we'll hear more on what happened to Ben later in the programme. But now we move on eight years and to the story of a young baby girl, Ayisha.听 Her father recalls the occasion of her birth.

听

Ayisha's father

The first week was really exciting, I mean first daughter - we've got two other boys, so first daughter.听 We actually planned everything for Ayisha, every single thing up until the delivery everything was normal.听 Came home the very same day actually.听 Everything was normal for three weeks.

听

Bakewell

But it wasn't long before they noticed she wasn't developing as they expected.

听

Ayisha's father

She wasn't moving as much as a normal baby would be moving and she wouldn't move her head as much as her eyes, so if you called her the first thing that would turn is her eyes and then slowly her head.听 She didn't have much movement in her legs at all and she would move her arm but she couldn't lift her arm altogether.听 She would cry, she would smile, she would laugh, she'd make noises - cooing noises - like a baby.听 Her facial expressions didn't have a problem whatsoever.

听

Bakewell

Ayisha is seen by the same doctor who treated Ben eight years earlier. She has a severe type of spinal muscular atrophy or SMA, type 1, another condition that affects the muscles.听

听

Doctor

The prognosis in this case was a lot clearer because spinal muscular atrophy is a commoner disorder and there's a lot more information available and statistics show that children with SMA type 1 rarely reach their first birthday and almost none of them ever make it to their second birthday.听 So clearly she had a very severe illness.

听

Bakewell

Ayisha was treated for her infection. She also needed sedation and a tube down her throat to help her breathe. Two months later she was back in hospital needing the same thing again.听 The medical team are concerned she is at the end stages of her illness.听 This time they prepare her parents for the worst.听听 First her father and then her doctor.

听

Ayisha's father

They basically said we will try her one last time but we can more or less give a guarantee that she's not going to come off.听 We were to say our goodbyes and give the family a chance to see her.听 We did that.听 She went back on to the ventilator, we bought all the coffin, we prepared ourselves, we really did, we did.

听

Doctor

We took the breathing tube out, we put her on a mask ventilation, we put her on a very deep sedative drip so that she wasn't suffering any discomfort and we were just waiting for her to slowly fade away.听 But she didn't.

听

Ayisha's father

And for the next two months she was fine.听 She needed a lot of physio but still she was breathing fine with the mask ventilation.听 So then we were in another dilemma of what do you do now.

听

Bakewell

Like Ben, Ayisha can't cough so she needs regular, intensive physiotherapy using a fine tube up her nose that sucks out the secretion that build up in her lungs. Her nurse would do this every day.

听

Nurse

And sometimes that procedure could go on for hours, trying to clear her.听 Sometimes she would just cry, although she couldn't vocalise to us you could just see the tears coming down her face and she'd also lost her ability to suck and swallow at that point.听 So what would be a normal comfort for a child she had lost that at that point.听 So for us we felt that there was an awful lot of invasive things going on with very little comfort.听 And sometimes I felt she'd look at me as if to say what are you going to do to me now.听 I came into the profession to care not to inflict pain and undue distress and sometimes I wondered whether that wasn't what we were doing albeit with the best intentions to try and help her.

听

Doctor

As the days and the weeks progressed it was absolutely just becoming very clear that the mask ventilation wasn't going to work at all, that she was on this mask ventilation pretty much 24 hours a day and therefore she couldn't even smile properly because she had this mask over her face.听 And I sat down again with my colleagues to try and decide what to do next.听 I personally felt that the next option was to think about a tracheostomy and allow her to be ventilated through a tracheostomy and perhaps to see if we could go home on a tracheostomy ventilation.

听

Bakewell

Her parents are keen for her to have the tracheostomy.

听

Ayisha's father

The reason we were keen to have a trache because you can get to the secretions quite easily and her face is clear, so you can see all of her face and she could make all the facial expressions.听 You can pick her up without any problem, without having a mask on her face.听 Her quality of life we were thinking would improve but we weren't sure with the underlying muscle condition, we weren't sure whether that's a good option or a bad option.听 We'd also heard that you lose all movement whatsoever and life really becomes a burden on you then.

听

Bakewell

The doctor and her parents want her to have a tracheostomy. But one of the medical team, another doctor, is against it.

听

Second doctor

My concern was that her underlying condition was one that was going to get worse and worse probably fairly quickly and to a point where she would have no way of expressing how she was feeling about what was happening to her.听 And the problem with the condition she has is that her ability to think and to feel and to suffer is all completely intact and so her brain is working brilliantly and what worried me about long term ventilation approach is that you're committing her to a point where she will become locked into her body and her weakness will become so profound that even to create the sort of facial expressions that you might need to communicate your needs was going to be beyond her.听 And then you'd be relying on people anticipating her needs and obviously doing everything they could to maintain her comfort but she would have no control over that and that's why in this particular case I felt that long term ventilation for her would potentially be cruel.

听

Bakewell

Ayisha's parents are Muslim and their religion plays an important part in their decision making.

听

Ayisha's father

Our religion basically says preservation of life is very, very important but then in the same scenario you cannot be cruel to anyone and physio is more or less - what we felt at the time - was more or less torture.听 So it was if you go for a trache and you still have to do this amount of physio Islamically, so you couldn't really - you couldn't say a trache would be a good idea because you're preserving life but then you're increasing the torture.听 Whereas if you don't do a trache you're losing life when there is something available to extend it.听 So in both cases we were damned if we do and we were damned if we don't.

听

Bakewell

Back now to our panel of experts to consider the case of Ayisha.听 Now just let's clarify this:听 Ayisha has 24 hour ventilation with a mask covering her face and she's enduring hours of painful physiotherapy every day.听 John, is that sustainable?

听

Wyatt

Well I don't think it is and I think somebody used the word torture and I fear that that could be seen as this is torture.听 And again I have cared for children with this particular condition and there is a particular way they look at you with those big plaintive eyes, unable to move and yet clearly able to suffer.听 So it is an excruciating dilemma but my instincts therefore are to move towards a palliative care.

听

Bakewell

Well we'll come on to that in a moment.听 But let me just - you say they look at you with those eyes, is that subjective or do you think it's possible for a child to express feelings and thoughts through their eyes that are accurately interpreted by an adult?

听

Wyatt

Yes I do, I think a healthy child has lots of ways of making its feelings known and the child screams and goes blue in the face and throws the toys on the floor and so on.听 A child with a severe neurological condition can do nothing apart from look at you and therefore it's so important I think for us to pick up the signals that are in the eyes.

听

Bakewell

Now Paul, Ayisha has been in hospital most of her life, would it make much difference do you think to her responses and her capacity to respond if she was at home with her parents?

听

Baines

Probably because you get - there's more attention, other children crowding around or whatever.听 To be fair the children in hospital get quite a lot of attention from the nurses too and perhaps sometimes a reasonable amount of attention because they're not having to do other things apart from to look after the child.听 Just coming back to this idea of being mask ventilated - it's much nicer to be ventilated through a tracheostomy because you don't have something on your mask and you can move your head more easily and the mask itself is quite constraining, it's a technique that people have really only used in the long term for overnight ventilation and to be on mask ventilation 24 hours a day is unsustainable probably.

听

Bakewell

Deborah, we're back to the best interests of the child here aren't we.

听

Bowman

Yes we are and I think you can hear in the testimony that actually it's an impossible choice, we are trying to make a judgement about a child, what the clinicians see in her eyes might be what her parents see in her eyes or it might change actually - they might both be right or neither of them might be right.

听

Bakewell

Sally, what do you make of this from the point of view of caring for the parents as much as the child?

听

Flatteau Taylor

Well I think the parents will respond to the signs from the child but I think again definitely the child will be communicating, I think children do communicate however poorly they are and they'll be communicating to their parents.听 So again the parents will be the voice for the child I think.

听

Bakewell

But how much do we have to consider the best interests of the parents?

听

Flatteau Taylor

I think very much so as well because the decisions that are made, that they make, that they're enabled to make through discussions, through communication will stay with them forever.听 We work with families right through the death of a child and into bereavement support and the conversations that are held and decisions that are made are what stays with them.听 And I think having the time at home - I mean they are in an impossible situation, impossible question - but having that time with Ayisha I think would be so important for them.听 Parenting is an important role for them still to have their child.

听

Bakewell

Do you have situations in which the parents want one thing and the medical staff want another and what do you do about that?

听

Flatteau Taylor

Yes we certainly do, we find that that happens quite a lot.听 What we'll do is we'll listen - we are there for, with and for, the parents and we listen to them and we work where we can with the child as well and then we'll work as a team with the parents to help the communication with the medical team - call a meeting, just help the communication, making sure that relationships - because the team and the parent relationship is vital.

听

Bakewell

Deborah.

听

Bowman

And I think what we're hearing is that actually it's not about one side being right, it's about having a conversation where you can have these incredibly difficult discussions and acknowledge that each has a perspective and to hear that and to try and discuss expectations within that and that takes time, it takes skill and it takes courage.

听

Bakewell

Deborah, the doctor describes their concern about not being able - the woman doctor - the doctor there described her concern that Ayisha was not able to express pain or fear and so they hadn't got enough evidence to know what she's experiencing.

听

Bowman

Indeed and I mean I suppose one of the questions I have then is well we haven't got that evidence, it doesn't mean it doesn't exist and I think it also demonstrates that two people with the same training, with the same expertise, with the same specialty can look at a child and perceive the situation quite differently.听 But you could use that as an argument either for more time or that actually this child will never be able to express pain, suffering etc., and therefore more time is futile.听 I would err on the side of more time, not because of dodging it but because there may be ways in which getting to know this child will create all sorts of better understanding about how this child is communicating.

听

Bakewell

Now John there's another element in this which is that Ayisha's are Muslim, how much does a religious consideration enter into decisions?

听

Wyatt

Well clearly they are part of the overall discussion and I think it is absolutely true that the parents are experts in the sense that they're experts in their own philosophy and their own background and their own beliefs and their own family history as well.听 And the medical team hopefully, the healthcare team, are also professionals and experts and therefore the best kind of relationship that works is a sort of expert/expert relationship where there is an attempt to try to achieve mutual consensus.听 But expert/expert relationships depend on mutual respect so therefore the healthcare team must respect the particular perspectives, and including the faith perspectives, they are part of the mix.

听

Bakewell

Does a faith have any legal status as a consideration?

听

Wyatt

Well I think one of the fascinating and challenging things about modern society is that everybody has a faith, everybody has certain beliefs, certain commitments and the challenge of a pluralistic society, our world view, is our perspectives are different and therefore we need to find a way to work together and that has to be based on mutual respect.

听

Bakewell

Paul, this situation of Ayisha is happening eight years after the situation with Ben, has medicine changed over that period of time and indeed has attitude changed?

听

Baines

Medicine's changed, partly because it's now easier to do long term ventilation as we've long term ventilated more people, the technology's developed, so it's become more feasible to do it, which in some ways alters the balance in favour of doing it because the technology's available and it's more likely to be successful and it's less burdensome to the child.

听

Bakewell

And the nature of the discussions around the bedside, as it were, with the parents has that undergone change?

听

Baines

It's difficult to say, people always look back and say oh it was better or worse or whatever insofar as we all practice in our times.听 I think in paediatrics we've always been reasonably open to discussion with parents.听 I think we are very conscious of trying to, even if we would disagree with parents or if we do disagree with parents, trying to agree a route that we can both reconcile ourselves with.听 And one of the things to make about this case is that the dispute or the dissent is within the medical team themselves, rather than with the parents.

听

Bakewell

Right, well you're the ethics committee I want to know what each of you would recommend both about Ben and Ayisha.听 Paul.

听

Baines

Starting with Ayisha first, the little girl with spinal muscular atrophy, I tend towards the view that she shouldn't be ventilated in the longer term.听 I think the current situation of keeping her on mask ventilation isn't tenable, I think my advice would be that we move towards palliative care.听 I think it's very important that the parents are reconciled with that.听 To be fair if the ethics committees discussing this and the clinician who's caring for the child thinks that a tracheostomy should be done and the parents want a tracheostomy to be done I think my recommendation as an ethics committee member rather than as a clinician would be that we probably should do a tracheostomy.

听

Bakewell

And Ben?

听

Baines

Ben, brought up to date.听 Now I'm not so sure about.听 And the reason I'm less sure is because of the greater degree of uncertainty about the progression of nemalin rod myopathy.

听

Bakewell

Right.听 Sally Flatteau Taylor what would you say for Ayisha, for Ben?

听

Flatteau Taylor

In my role I'm never in this situation of - but I'd be listening to the parents and helping them come to a decision.听 Having said that some parents actually ask my advice and - not my advice but my opinion as well.

听

Bakewell

I am.

听

Flatteau Taylor

Okay.听 I think with Ayisha there's a question of her being at home and I think that sounds really important to the parents.听 Now whether that's palliative or whether that's with a tracheostomy I think the home is the important thing.听 So I think if the tracheostomy would help her to go home I think that would be in her best interest.

听

Bakewell

John Wyatt.

听

Wyatt

Well I would very much vote in favour of palliative care and try to explain and encourage the parents to think in those terms - that the child is coming to the end of a disease progress.听 But I very much think the idea of trying to get her home, if at all possible, and to help her to die well at home with the right kind of support or in a paediatric hospice would be much better than being in an acute hospital. So that would be the goal but I suspect probably without a tracheostomy.

听

Bakewell

And Ben?

听

Wyatt

The issue there is the uncertainty of the prognosis and I think if there is a possibility that he might actually survive for some considerable time then I would think that a tracheostomy might be appropriate.

听

Flatteau Taylor

It sounds like Ben's condition could be much longer term, it's very hard to hear.听 Yeah it sounds longer term and I think just from hearing all the facts my personal view would probably be a tracheostomy but it would need to be really thought through by the family.

听

Bakewell

Deborah Bowman.

听

Bowman

I suppose that - this isn't to dodge the question - but I guess all I've heard is about the tracheostomy option for both children and I guess a bit like John I'd want to think about what care might mean and what treatment might mean for this child or both these children actually, each of these children, in a more wide ranging way.听 So I'd want to know why the ethical question as asked is about a tracheostomy, I'm not sure why that is the ethical question.听 I know that's irritating but I think that probably is my first point.听 I think the second point is about time - it may be that this isn't a decision that can be made at the moment, for whatever reason, it might be that the families are not ready or that they have priorities or that there are things in their lives that we haven't heard about.听 So I'm not ruling out a decision, I'm not saying it doesn't have to be made but I would want to know why now and why this decision.

听

Bakewell

Okay, well we'll now go back to follow both stories.听 In fact both Ben and Ayisha were given tracheostomies and are being ventilated at home. Ben is now 11 years old and Ayisha is 16 months. Now their parents and doctors must decide if and when they might withdraw this life-prolonging听 treatment.

听

Ayisha left hospital to go home over a month ago. Her father:

听

Ayisha's father

Before we came out she had a couple of chest infections, she'd had a couple of viral bugs and every time she gets an infection or a bug there's some movement that she loses with that infection.听 But at the moment, as a whole, at the moment yes she can still move her hands, she can move her head a little, she can't smile but she can make cooing noises, she's got her eye movements so six months on she's still got a decent quality of life or she's got some quality of life.

听

Bakewell

And what about the future?

听

Ayisha's father

The future's probably very bleak.听 I'm hoping for a cure because bear in mind medicine changes day by day.听 I know she's not around for a very long time, I know she's going to go one day, one day soon probably within 12 months I'd say.听 To be honest I'm hoping that a chest infection will be so severe that dwindles away with that, rather than us having to make that decision.听 So one would hope that if that time does come it's not us that makes the decision, it's Ayisha.

听

Bakewell

And how does her doctor consider what to do in the future?

听

Doctor

I think the easy situation would be if she were to get a very severe chest infection and we try everything that we can do and then we all agree that we've reached the end of the line and we're going to have to withdraw.听 The far more difficult and challenging situation would be where she continues to deteriorate slowly but gradually but as time goes on she's needing more and more intervention, more and more - and suffering more and more discomfort but yet hasn't reached the stage where it's obvious that it's too late.听 And at what stage do we then say that we think on balance keeping her alive with a machine and the tracheostomy is doing more harm than good?

听

Doctor

The time that we have with her is very, very special, it's extremely special.听 The boys enjoy it, they've still got their sister around, we enjoy it most of all - home life is based around Ayisha.

听

Bakewell

Our final discussion now is about the future for Ben and Ayisha.听 If parents and the medical team realise that a child is actually dying how do they decide when is the right time for palliative care?听 John.

听

Wyatt

Well I think what's very important is the diagnosis of dying and this is something that doctors are not necessarily good at or trained in.听 But I feel it's very important that for all doctors to be able to recognise the point at which the patient is dying and at that point prolonging the dying process is something which is entirely inappropriate.

听

Bakewell

What do you think Paul?

听

Baines

I'd agree.听 It's very difficult and it's difficult in children who are supported by technology and it's difficult in children who aren't sometimes and it comes back to the idea of looking at life through the eyes of the child and just working out what seems to be best for the child.听 It's very important that parents are reconciled with whatever decision is made but it's also important that treating clinicians are reconciled with whichever decision's made.听 And in an awful lot of these situations it's not awfully clear.

听

Bakewell

John, the father and indeed the doctor both want her own illness to take care of their problem.

听

Wyatt

Yes and I think to be honest it's a very understandable thing that parents often say, they don't want to take the decision themselves, they want something else to happen to take it out of their hands.听 But the truth is that actually we can't abdicate these decisions, that between us, as the medical team and as the parents, we need to do what is best for the child, and sometimes that means that we have to agree together that stopping the treatment now is in the best interests of the child.

听

Bakewell

And that takes courage doesn't it Sally?

听

Flatteau Taylor

That takes a lot of courage yes, the team have to be very self-aware and able to have those difficult conversations with the families.

听

Bakewell

When do you know how to bring in palliative care Deborah?听 And when do you call it palliative care?

听

Bowman

I think no one could answer that question, I think different clinicians have different thresholds in a good team.听 With good access to palliative services which is the other factor clinicians will be anticipating palliative care and having discussions about it probably long in advance of what it might be needed.听 But I think different families and different clinical teams will have a different view actually about moving to palliative care.听 I think palliative care we associate it with a good death and death and dying but in fact that's really not to represent the richness of what palliative can do and does.听 I think one of the things that strikes me about this is how hard the clinical team have worked with the family and I imagine that they have been having discussions which may or may not be labelled palliative care but are about expectations.

听

Bakewell

Now suffering for someone who has been born with a medical condition already and doesn't know what you might call normal is, how do you assess suffering and how do you assess whether the suffering is getting unbearable?

听

Bowman

Again I mean it's not as though you can take a blood pressure and see a reading, it's not like that and I think all you can do is piece together the information which is soft information, it's qualitative information, it's subjective information but it's nonetheless important for that, just because it is qualitative and soft and subjective it doesn't mean that it's got any less moral weight than the evidence based quantitative RCT or whatever.听 So I think it really is a painstaking process and quite rightly so, these are huge decisions and they need time.

听

Bakewell

Sally, Ayisha's father spoke of how precious the time was at home and of course that's something that medical teams can't observe because they don't go - they don't live in that position, would that make a difference, will that make a difference to the prospect for Ayisha?

听

Flatteau Taylor

I think yes I think it would make a difference, that is one real good measure of quality of life and suffering because if the child is suffering the whole family suffers as well and yes it's really - it's really important that they'll have that time at home together and again it's that soft information - they can observe, they can watch.听 We have families who come to the Maypole Project who actually start wanting to talk about palliative care before the medical teams do, they see their child, they don't want them to suffer, they want to start those conversations so we'll help them introduce the conversation.

听

Bakewell

How are you to know when a person's life is worth living, it's such an abstraction isn't it, how would you do that Sally?

听

Flatteau Taylor

I think it's an impossible - an impossible judgement to make.

听

Bakewell

John.

听

Wyatt

I mean life is precious and therefore understandably medicine and doctors and healthcare and parents all wish to do whatever possible to protect life and the instinct of parents is always, as has been said, to try to prolong life.听 But there does come a point where we recognise that the person is dying and that desperately prolonging each moment, each hour, each heartbeat is wrong and so the goals of palliative care is not to prolong life, nor necessarily to shorten life, the goals of palliative care is to maximise and optimise the child's experience in those last few minutes, hours, and days and particularly the time with the parents.

听

Bakewell

Paul.

听

Baines

I think what was said is absolutely true, these are sometimes impossible decisions and yet they've got to be made but as someone's already said - damned if you do and damned if you don't.听 And sometimes we do some things that seem wrong or bad but the other options seem even worse.听 And how do you judge it?听 I don't know but someone has to and we have to.

听

Bakewell

Thank you all very much.

听

And we'll leave the last word to Ben and his mother.

听

Ben's mother

Can you turn that way a little bit, yeah?听 Go on.听 He doesn't have a [indistinct word] valve or anything like that, he learnt to talk round it all by himself.

听

He's just finished at his primary school now, he's going in year seven which we say was the senior school and he has done really brilliantly, he's had top marks or mainly top marks in everything.听 The only thing he doesn't like is history.

听

Bakewell

And what about the future for Ben?

听

Ben's mother

Knowing Ben he'll see me out.听 Everybody likes to say that their child's a fighter, he is and every mum knows their child and you'd know your child if that child's had enough and you know how far they want to go.

听

ENDS