大象传媒

Deborah Bowman, Professor of Ethics and Law at St George鈥檚 Hospital, London

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Emily Harrop, Consultant in Paediatric Palliative Care at Helen and Douglas House Hospices in Oxford

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Francis Edwards, 鈥嶱aediatric Palliative Care Liaison Nurse at Bristol Royal Children鈥檚 Hospital

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What a moving episode. What a lovely mum she is.

If little Emma had been a pet she would have been put to sleep quietly and put out of her misery. What they all went through was horrendous.

My heart goes out to everyone concerned.

(Anne Fricker)

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Why oh why is your presenter insisting on using the present tense when reviewing historical events?

It presents an inaccurate picture!

It is the worst of 'modern' broadcasting techniques!

It is VERY annoying!

IT MADE ME SWITCH OFF AND LOOK FOR THIS PAGE!!

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It reminded me that the switching off also occurred last week!

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Sad - it looks as though it could have been an interesting series.

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Does no-one edit text before recording?

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(Maggie Manders)

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I can't hardly bear to listen to this - surely a case when a baby should have been left to die with dignity shortly after birth.听 So much terrible agony for child and parents.听

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(Alison Field)

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This must be one of the best programmes on air - just caught the end today and it had me in tears.

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Radio 4 is one of the best channels in the media.

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(Kirsten Barger)

Downloaded from 听

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.

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INSIDE THE ETHICS COMMITTEE

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Programme 3 鈥� Withdrawing Feeding in Children

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TX:听 30.07.15听

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PRESENTER:听 JOAN BAKEWELL

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PRODUCER:听 LORNA STEWART

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Bakewell

Food and water keep us alive. Yet sometimes in the closing hours of a person鈥檚 life it can make sense to withhold food. But what if that person isn鈥檛 dying and what if it鈥檚 a child?

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Welcome to Inside the Ethics Committee.

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It is summer 2002. Louise and her partner are expecting their first child; a girl who they name Emma.

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Mother

We was overjoyed, over the moon, couldn鈥檛 wait to start out family.听 I had Emma at nine minutes past four in the afternoon and she was a beautiful, beautiful baby.听 She had bright red hair.听 But it was quite apparent that something was wrong.

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Bakewell

Emma is born with a very swollen head, caused by a build-up of fluid on her brain. Brain scans reveal that Emma has a condition known as lissencephaly, or smooth brain, where the outer layer of the brain hasn鈥檛 fully developed鈥�.and won鈥檛 do so.听 Doctors fit a shunt to drain the fluid but that鈥檚 all they can do. Emma鈥檚 neurologist explains the outlook to the family.

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Neurologist

Initially when we counselled Emma鈥檚 parents I think they were given a very poor prognosis, in fact we didn鈥檛 think that she would make her first birthday.

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Mother

It was just bad news after bad news after bad news.听 Obviously you have a cry and you think why me, why me but if that was Emma鈥檚 life then that was Emma鈥檚 life, I was going to do everything I could for her to have a wonderful life.

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Bakewell

Emma is at the severe end of impairment for children with this condition.听 She has frequent epileptic fits which are controlled by medication. She鈥檚 virtually blind but responds to sound. And she has difficulty swallowing which puts her at high risk for choking, which could be fatal.

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At six months old there鈥檚 a crisis. Emma stops breathing. Paramedics rush her to the hospital where doctors revive her but her risk of choking is now so great that they have to feed her through a tube into her stomach.

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Despite all this, Emma is doing surprisingly well. Her first birthday comes and goes, then her second.

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Mother

We just got through every birthday, every birthday was a massive milestone for us and every time we took her back I think a lot of the doctors were surprised to see how well Emma had got on.听 It was like yeah she鈥檚 proved everybody wrong but I knew she would, I somehow always knew she would prove everybody wrong.

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Bakewell

But as she gets older, the impact of her brain condition stops her making the progress appropriate for her age.

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Mother

Emma couldn鈥檛 do anything really, she was reliant on me for everything, she couldn鈥檛 sit up unaided, she couldn鈥檛 hold her head up, she couldn鈥檛 walk, she couldn鈥檛 talk, she couldn鈥檛 feed herself so she was completely reliant on me.听 I think she had the mental age of a six month old baby.听 So yeah she was my big baby.

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Bakewell

Emma is in and out of hospital a lot. With each visit the doctors warn her mother that it is likely to be her last year. She requires constant care and frequent hospital procedures for her complex condition. Her nurse specialist:

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Nurse

So there would be tummy problems, there would be teeth problems, there was the weight issue for a while, there was seizures but every time something was done in her treatment and off she went again.

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Mother

We just took every day as it come.听 We had birthday parties every 鈥� every year that went on they kind of got bigger and bigger because it was such an achievement that she鈥檇 reached this special age.

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Nurse

She was a very happy smiley giggly girl.听 Lots of memories of her sitting in her wheelchair giggling and being interactive on her level.

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Mother

She knew her routine.听 So she loved her bath times and she knew that she鈥檇 have her hair washed and then blow dried and she loved girly things so I would paint her nails and we鈥檇 have the music on and she loved the Beach Boys and she loved Michael Buble.听 Just cuddles on the settee, we used to sit on the settee and have lots of cuddles and singsongs and she loved just simple silly things 鈥� slurping cups of tea she would burst out, you know, laughing till she would go blue in her face because she couldn鈥檛 suffer it anymore where she was laughing so much.

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Bakewell

The neurologist

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Neurologist

The family were incredibly dedicated.听 I mean I always say to the family actually if it weren鈥檛 for their love and attention and care I didn鈥檛 think Emma would have been with us that long.听 And I can remember their visits to the clinic and it actually would be the whole family that would be there 鈥� the mother, the aunt and the grandparents 鈥� I mean they were incredibly engaged as a family looking after her.

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Bakewell

The years continue to pass and to the medical team鈥檚 amazement Emma turns 10 years old. But her brain condition means that her feeding is still problematic. After years of being fed directly into her stomach it eventually grows too sensitive. So her tube is adjusted to deliver food straight into her intestines, bypassing the stomach entirely.

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Emma鈥檚 first decade has involved many medical procedures but she鈥檚 always come through. But now the team are finding it more difficult to handle her problems. Her mother:

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Mother

She was having a lot more problems 鈥� urine infections 鈥� and they were becoming every other week; and we was in hospital every month.

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Bakewell

The medical team is eager to find where the pain is coming from.

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Nurse

Children like Emma who have got very reduced mobility she wasn鈥檛 doing anything for herself 鈥� pain can become an issue.听 So once you start to think about pain you have to start top to bottom, look at everything, so we were looking at hips, we were looking at 鈥� well firstly before that 鈥� positioning, is there certain positions, has she got pressure sores, simple things that may have been the problem.

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Bakewell

The team eventually discover kidney stones. They think these might be the cause of her pain and frequent urinary infections. Removing the stones would require surgery and such a procedure carries risks for Emma.

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Mother

They did warn me that it could be the start of something really horrific for Emma, she could decline in health really, really badly after the operation.听 But I felt I had no other option because her quality of life was 鈥� was not as it was before because of these constant infections and she wasn鈥檛 enjoying life at that point, she was constantly in pain.

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Bakewell

Emma is admitted to hospital and surgery to remove her kidney stones is successful. All appears well and she returns home but more and more problems arise. Removing her kidney stones doesn鈥檛 seem to have helped all that much - she鈥檚 in and out of hospital every month with increasing pain that is not controllable. A few months after her 11th birthday she takes a turn for the worse. She鈥檚 admitted to hospital again showing signs of infection but the doctors are unsure of the cause. Her situation is dire. Family and friends say their goodbyes and a priest visits to read her last rites.

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Mother

I forgot her special toy that she had which was Violet the Dog and it said her name.听 And my sister rushed home and got it for me and brought it up and she played it to Emma and as soon as she did she opened her eyes.听 It was like a miracle, you could say, and she was looking round as if to say what are you all doing here, you know.听 And she started to get better again.

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Bakewell

Again Emma returns home but she鈥檚 having more regular seizures, the pain keeps returning, and the team are no clearer about what is causing her discomfort. After several more months of trying 鈥� and failing 鈥� to make her more comfortable, they decide to admit her again to try finally to resolve the issue of her pain.

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Nurse

I was quite shocked when I鈥檇 seen her that night, I mean we鈥檇 had 鈥� there鈥檇 be telephone calls between us in those few months prior to that but actually until you see it face to face you can see how distressing this is and how distraught Emma was by this pain and the fact that she has no means of communicating how she鈥檚 feeling.听 It was heart-breaking really.听 And the deterioration in those couple of months between the admissions 鈥� it was very apparent.

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Mother

Horrific, horrendous 鈥� in complete and utter pain.听 Every time you tried to feed her she would scream in complete agony.

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Nurse

It was very clear that any time anything was put down into her tummy 鈥� milk or medication 鈥� that would exacerbate this pain.听

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Bakewell

Joining me now are Emily Harrop, who鈥檚 Consultant in Paediatric Palliative Care at Helen and Douglas House Hospices in Oxford and Francis Edwards, 鈥嶱aediatric Palliative Care Liaison Nurse at Bristol Royal Children鈥檚 Hospital.

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So let鈥檚 talk about this case of the prognosis 鈥� did the doctors get it wrong Emily?

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Harrop

I think it鈥檚 never as simple as right or wrong, there鈥檚 always a normal distribution of how people will actually do given a particular set of scan results or diagnoses at the very early stage, so antenatally, immediately after birth.听 And I think there鈥檚 been a very traditional approach to prepare parents for the worst, probably by painting quite a gloomy prognosis.听 I think we鈥檙e becoming much more aware of the importance to counsel people about the uncertainty as well now.

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Bakewell

But of course, Francis, it鈥檚 quite difficult for the family, this child might live two years, might not live a second year, is that appropriate?

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Edwards

I find that very difficult and I think that putting a timescale on some of these children is really, really difficult because I think none of us know, we don鈥檛 know what they鈥檙e going to do.听 And I think we need to be open to that.听 And I think that first encounter that the family have with the medical team and the nursing team is so, so important for setting the foundation of what happens next.听 And that may be over a short period of time or it may be over many years.听 And the sort of thought about palliation and palliative care, I think most people think that鈥檚 about end of life but in actual fact it鈥檚 not 鈥� palliative care for me, as a clinician, is about living.听 The bereavement starts at diagnosis 鈥� this mother鈥檚 already starting to grieve the loss of the child that she never had or the child that she was expecting to have and the child that is going to die and who鈥檚 going to have a shortened life.

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Bakewell

But you have to offer them hope too.

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Edwards

Absolutely and I think the management of hope is so, so important.听 But I think parents need to 鈥� they need two things from us 鈥� one thing I think they need from us is honesty and they need us to be honest but I think also they need to be able to trust and respect us as professionals.听 And you need both of those things to be in play for that relationship to unfold over however long that may take.

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Bakewell

Now Emma can鈥檛 talk so how do you, Emily, as a doctor, determine the quality of life for someone who can鈥檛 talk?

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Harrop

Very many of my patients are non-verbal and I know through talking to their families, through hearing what their life is like, that I get a feel for the quality of it, so I have very many non-verbal patients who greatly enjoy school, who greatly enjoy holidays, I have patients who go camping on non-invasive ventilators, I have patients who go camping on a feed pump and we would always support this.听 So I think you can get proxy measures by hearing their enjoyment of their life, you can also pick up on what鈥檚 been difficult for them 鈥� maybe they haven鈥檛 been able to access school for a while, maybe it鈥檚 been very difficult for them to undertake something of meaning for them.听 And you can help them to look for ways to enable that activity.听 I think when you look at pain it鈥檚 very difficult because pain in children like Emma is very rarely a straightforward simple single cause pain, you know it鈥檚 obviously frequently a complicated multifactorial problem, so it might be what we would think of as usual pain, it might be pain from their nerves because their neurological system is not healthy, which we might call neuropathic pain.听 And there may be many sources, as her mother alluded to, people had looked at her hips, her teeth, her tissue viability 鈥� that鈥檚 only the tip of the iceberg for her.

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Bakewell

Francis.

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Edwards

I agree with everything that Emily鈥檚 just said and that for me the quality of life is a very difficult thing to assess but the best person to assess that is the parent.听 And I鈥檒l be standing by the bed of a child with a mother and she will just say did you say that look, did you see that smile and that, for them, indicates the quality and that is so, so important.听 So no, no the part of the conversation听 you know you ignore mothers at your peril as a professional.

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Bakewell

Do you have the idea in your mind that this child is in some way dying, on her way to dying, and do you ever use that word?

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Harrop

I think it鈥檚 very hard to know if that鈥檚 the appropriate word because I think she鈥檚 also living.听 Very many of the children that we care for have these sorts of neurological complex conditions and we may care for them for one year, we may care for them for 10 before we end up delivering what鈥檚 more akin to traditional palliative care or end of life care.听 So I think it鈥檚 very hard to say that she isn鈥檛 dying and her life is likely to be shortened but I think it would be very negative to focus on her as a dying child.

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Bakewell

But Francis you鈥檝e already said palliative care doesn鈥檛 mean only care of the dying but it does include that, so when does one kind of palliative care move into the other?

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Edwards

Well absolutely but 鈥� and I think that you start to get signs and the child will start to demonstrate signs and symptoms which will give you some clues about the direction of travel and where they鈥檙e going.听 And I think that until that time comes it鈥檚 really, really important that you enable the family to do the living and to do the things that they need to do, as a family, and like the mum talks about all the memories and the special birthdays 鈥� they鈥檙e just so, so important for the long term and that is part of their bereavement work as well.听 And so it鈥檚 working with them along that way but not denying the fact that this child, Emma, has a shortened life and we expect her to have a shortened life.

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Bakewell

Right.听 Well let鈥檚 pick up the story again. It鈥檚 July 2014 and Emma has been admitted to the hospital in great pain.

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Nurse

I remember going to see her on the ward and she was lying in the bed, she was postured like somebody in pain and there was just constant 鈥� this high pitched screaming, she just looked distressed.听 And then actually the whole family just looked distressed.

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Mother

I just was beside myself because I couldn鈥檛 help her.听 Nobody could help her at that point and she was in horrific pain.听

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Nurse

Pain should never be an issue in a young person or an adult if they鈥檙e unwell, you should be able to get on top of it.听 And despite having lots and lots of different various very strong medications this pain was just constantly breaking through.

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Bakewell

The team decide to perform a small procedure to repair the tip of her feeding tube hoping that it will alleviate some of the pain. But it doesn鈥檛 work. They look for other possible causes; ruling things out takes time. She still has one kidney stone but they don鈥檛 think that鈥檚 causing her pain. They have ruled out all other possibilities and gradually they conclude that the problem must be her gut. Anything that enters her gut is causing her extreme pain 鈥� including her medication. They stop feeding her for a few days at a time and then try to reintroduce food in very small amounts. But even a tiny amount of food is given, Emma is once again in writhing agony. Emma鈥檚 surgeon.

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Surgeon

The dilemma we were then in was if we can鈥檛 feed Emma through her bowel in the normal way with a tube then the only other alternative to feed anybody is through the veins.听 And nutrition through the veins comes with another multitude of risks.听 It requires central lines to be able to give the nutrition, which involve operations to be put in and carry the risk of infection.听 And it also 鈥� because it is metabolised by the liver 鈥� it over the longer term has risks in terms of liver damage and impairment from that perspective.

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Bakewell

The team doesn鈥檛 think that the risks of feeding Emma via her veins can be justified. The operation would require an anaesthetic which she may not survive. Feeding through the veins over the long term could lead to serious liver damage. But whilst they continue to weigh up options her mother desperately needs decisions, she cannot bear to watch her daughter suffer.

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Mother

They was giving her morphine, ketamine, clonidine, fentanyl, midazolam and she was still screaming in pain.听 Obviously as a parent you want your child to not feel any pain and I just wanted people to do things when I wanted them to do it, I didn鈥檛 care whatever else they was doing I just needed my child out of this pain.听 She would literally throw her head back and arch her back and just scream and shake in agony and all I could do was lay on the bed and hold her and rock her and try鈥�. try to just comfort her.

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Bakewell

Despite this desperate situation, one thing the doctors are certain about is that Emma is not dying. Her gut is failing but her other organs are functioning well. Her neurologist鈥�and then her surgeon

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Neurologist

We have a child who鈥檚 actually having quite severe symptoms, we are throwing quite a large amount of medications at her to control her symptoms but actually we鈥檙e not winning.听 We鈥檙e not achieving what we want to achieve, which is give her a good quality of life and be distress free and pain free.听 And it became very clear that she might be like this for a long time because she was not actively dying.

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Surgeon

When you鈥檙e talking about someone actively dying, it鈥檚 more of a direct process.听 And so in Emma鈥檚 case she wasn鈥檛 actively dying from an infection, she wasn鈥檛 actively dying from a bowel blockage or a physical thing, it was just a slow progressive deterioration that would have continued to occur.听 And that鈥檚 the difficulty.听 If she鈥檇 developed an acute infection it鈥檚 an easier decision to say well we may not offer intensive care treatment for this infection, for instance, because there鈥檚 something active happening.听 Whereas when that鈥檚 not the case it鈥檚 a much 鈥� a much more difficult decision about what to do or not to do.

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Bakewell

At the moment Emma is not being fed. The team doesn鈥檛 want to cause her more pain by feeding into her intestines, but they also don鈥檛 feel they can risk putting nutrition into her veins. But should they stop feeding her altogether?

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Neurologist

Children who die of, for example, cancer they are given food until the very end, so it would be a very unusual situation to withdraw nutrition in palliative care per se.

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Bakewell

Food is given to these people, dying or not, for very good reason.

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Surgeon

When you don鈥檛 provide nutrition to someone, so for Emma, the body isn鈥檛 getting the nutrients that it requires and so is unable to metabolise and to replenish cells in the same way that it would normally.听 So you can live without nutrition either by mouth or through the veins for a long period of time but you won鈥檛 be able to continue living forever because you鈥檙e essentially missing the food.

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Bakewell

The team decides to refer Emma鈥檚 case to the ethics committee. Should they stop feeding her?

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Neurologist

The referral to the ethics committee was made by me and I think myself and our palliative consultant colleague, we both felt actually we鈥檙e all on the same page here but we still felt that actually this is a big decision.

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Bakewell

The nurse:

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Nurse

We wanted to know should we stop feeding Emma because of this pain.听 I felt very strongly that she was telling us that she was tired.听 We knew that feeding her was causing her pain and that this was the start of her end of life course really.听 So our question was:听 would we have the support of the hospital if we were to stop feeding her and just give her hydration intravenously.

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Bakewell

Now we turn to our panel once again and joining us alongside Emily Harrop and Francis Edwards is Deborah Bowman, Professor of Ethics and Law at St George鈥檚 University, London.

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First of all Emily, will you define for me what is artificial nutrition?

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Harrop

So artificial nutrition is nutrition that you have to provide in a way that is not the way we feed ourselves, so we feed ourselves by being able to eat, chew and swallow food.听 For people for whom that鈥檚 not possible they may be artificially fed through a tube between their nose and their stomach, through a surgically created tube directly into their stomach or small bowel or even by the provision of intravenous sterile feeding.听 And those are all artificial nutrition options of different levels of invasiveness.

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Bakewell

So how long can someone continue to live on artificial feeding?

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Harrop

People live on artificial feeding into their gut for years, for decades, but feeding somebody into a vein 鈥� that can only sustain a person for a certain amount of time.听 It鈥檚 limited by two main things 鈥� one is the access line needed, so people need a line going into a very large or central vein which has to be placed surgically as was described in Emma鈥檚 case, the other issue is over time it causes their liver to become fatty and eventually to fail.

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Bakewell

And how long can someone live with no food at all?

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Harrop

So this is something that I鈥檝e some experience of through my own work, more than 鈥� I would say there鈥檚 very little written about how long people survive with only fluids and no food.听 But it is certainly a number of weeks.

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Bakewell

So it鈥檚 a number of weeks.听 And what鈥檚 the experience of starvation like?

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Harrop

Well I think it鈥檚 important to say we would never refer to it as starvation, to a family, I think we generally wouldn鈥檛 have something quite as binary as feeding and not feeding.听 So I think what often happens in clinical practice in children with complex neurological diagnoses, whose gut fails over time, is actually it鈥檚 more usual that you become progressively less able to feed them and so there would be a much more of a sliding scale, so you wouldn鈥檛 be talking about one day being fully fed, the next day being starved.

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Bakewell

Now Deborah, it鈥檚 very interesting but to the lay world out there the option is to starve someone, that鈥檚 the word we all use, it鈥檚 difficult isn鈥檛 it to 鈥� we have to weigh the burdens of continuing to live in intolerable pain and the burden of starvation 鈥� how do you weigh that equation?

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Bowman

I think I鈥檇 say it a bit differently actually 鈥� I think it鈥檚 the burden of her life as experienced at the moment and the burden of the treatment which is being fed.听 And actually it鈥檚 looking at those two things together and saying is what the team is now doing to support her, to support her living with artificial nutrition, that itself has become problematic, it鈥檚 become burdensome, it鈥檚 causing her pain, it鈥檚 causing her suffering.听 But I think Emma鈥檚 mother is a very good observer, clearly she鈥檚 a very astute observer in this and it鈥檚 obvious that something has changed.听 What has been done in terms of treatment is now having an intolerable effect.

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Bakewell

We鈥檝e heard that Emma is not dying.听 It is a moral dilemma isn鈥檛 it Deborah.

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Bowman

It is a moral dilemma and I think there are lots of aspects to the ways in which it鈥檚 morally experienced if you like.听 So I think the first is that despite what the law says and what professional guidance says and in fact what many ethicists have argued 鈥� food is experienced differently, we perceive food as somehow special and nurturing and a test of love.听 So there鈥檚 that aspect.听 But there鈥檚 also the aspect of changing or withdrawing care.听 And that is always difficult.听 It鈥檚 always a judgement, it鈥檚 always laden with moral dilemma and choice.听 It has uncertainty as part of the context as well.

听

Bakewell

So food in this context constitutes care?

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Bowman

It constitutes 鈥� I would say it constitutes treatment and I think the majority of people in my world would.听 I would say that this is treatment because it is aimed at ensuring that this patient has a quality of life that is reasonable and now it has ceased to be the case that it is clear that the treatment is having the desired effect.

听

Bakewell

Yes, Francis you wanted to join.

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Edwards

Yes I just wanted to say that we never withdraw care, we withdraw treatment but we never withdraw care.听 We continue to care for a child up until their time of death and even beyond the time of their death.听 And I think that鈥檚 really important for people to make that distinction.

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Bakewell

Well does the law make this distinction Deborah?

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Bowman

Yes it does.听 The general legal principle is that artificial nutrition is a treatment, a medical treatment, and therefore is subject to the principles and practices that surround any medical treatment.听 So we can withhold or withdraw according to best interests in this sort of case.

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Bakewell

So from all that we know so far can I ask you whether you think they should withdraw feeding?

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Harrop

I think if she was in distress here and now it would certainly be appropriate to pause feeding, to reflect, to look at the impact of pausing feeding and then to consult again with the wider clinical team, with the family, and to gauge what that experience is for Emma, what that is for her parents and in fact is she in less distress.

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Bakewell

And Francis, what鈥檚 your view?

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Edwards

My view is 鈥� I mean I鈥檇 really want to understand the nature of what is causing the pain.听 If the feeding is the thing that鈥檚 causing the pain and that鈥檚 causing more harm than good then I personally don鈥檛 have an issue about the withdrawing of artificial nutrition.

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Bakewell

And Deborah?

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Bowman

Yes, I mean for me I鈥檓 not a clinician and so it comes with that caveat but what I hear makes me think about tolerability and it sounds that this is becoming burdensome and even harmful and that worries me.听 So I am inclined towards withdrawing feeding.

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Bakewell

Well let鈥檚 return to Emma鈥檚 story now.听 The ethics committee agree with the team; they should stop feeding Emma. Without food death is inevitable. But she is still being given fluids intravenously which means her body will go on functioning possibly for many weeks.

Everyone hopes that without food Emma will be in less pain. But her stomach is still producing digestive juices. Even when the team try to drain these away she is still in tremendous pain, even with such high doses of medication. The nurse:

听

Nurse

When you鈥檙e in a room with a child and parents that are very distressed watching their child suffer it is just completely heart-breaking.听 And you鈥檝e got no control, so you know you鈥檙e giving these medicines and the ward nurses are regularly giving more and more medicines, increasing pain pumps and yet could just see this breakthrough pain continuing.

听

Bakewell

Not only is it agony for Emma, it鈥檚 agony for her mother too. She wants to prevent her daughter from suffering in any way she can.

听

Mother

And that鈥檚 when I kind of said enough鈥檚 enough, I can鈥檛 鈥� I can鈥檛 let my child go through this anymore, she can鈥檛 survive for a possible month, two months, three months in this sort of pain, something needs to be done.听 And I spoke to the doctors and I asked them if I could go to court because I felt it was in Emma鈥檚 best interests to withhold all fluids.

听

Nurse

I had never in my many years of being a nurse ever been in that scenario where you would even be contemplating firstly withdrawing feeding let alone withdrawing fluids.

听

Bakewell

This is unchartered territory. Emma is no longer being fed so while her underlying conditions aren鈥檛 killing her, the lack of food will lead to her death. As long as she is hydrated, however, her kidneys continue to function, flushing out toxins that the body produces. Removing her fluids would mean that she would die sooner and that means less protracted suffering for them both. The nurse again:

听

Nurse

Every child is different but it was very unusual for a child to have gone through all that Emma had gone through and yet be showing no signs from a respiratory or cardiac point of view of failing.

听

Bakewell

After consideration, the team agrees with Emma鈥檚 mother. They believe that withdrawing her fluids would be in her best interests. But to be sure they are making the right decision they turn once again to the ethics committee, and also seek legal advice. The barrister considers whether to take the case to court even though the medical team and mother are not in dispute

听

Barrister

There鈥檚 always a concern that further along the line when emotions change that they鈥檒l be a change of view, either by the clinicians or by the parents or by the public who learn about what鈥檚 happened and they may consider this to be the killing of an otherwise fairly stable 鈥� I wouldn鈥檛 say she was healthy because clearly she had a lot of conditions that impacted on her health.听 She had already outlived her prognosis for her neurological condition, she鈥檇 lived for 12 years, she鈥檇 lived a fulfilling life and the only reason that she would not continue to live for another 12 years, who knows, would be that she was effectively being starved and deprived of water.

听

Bakewell

It鈥檚 a big decision and the barrister warns what the risks of not seeking legal oversight might be for the medical team.

听

Barrister

It may have been suggested that they were intentionally or deliberately taking a step that was going to hasten death or bring about death when it otherwise wouldn鈥檛 naturally have occurred.听 So they may have been facing criminal charges as serious as murder.听 So in order to avoid any suggestion that what the clinicians were doing would amount to something along the lines of euthanasia I thought that it was sensible to go to court.

听

Bakewell

Well we come back to our panel now who are looking extremely surprised at this.

听

Deborah, the word murder has been dropped into the conversation here, how relevant is that?

听

Bowman

I鈥檓 surprised.听 I am surprised, as you鈥檝e said.听 Of course to take the life of another is murder, that鈥檚 not the issue.听 What for me is the issue is that this is about the care of or the treatment of a child which is about determining best interest, that we know that you can withdraw treatment that鈥檚 not in someone鈥檚 best interest if they lack capacity.听 I think the other thing that struck me was the reference to she could live another 12 years, she鈥檚 lived a very fulfilled life.听 The difference for me is her life is no longer fulfilled, she is suffering.听 And I鈥檓 very surprised at this term.听 However, I don鈥檛 mean that to sound like a criticism because the weight of these decisions is considerable and it is impossible to judge the anxiety that this must be causing everybody.

听

Bakewell

How frightening is it, Emily, as a doctor who鈥檚 responsible for decisions, to feel that there could be legal consequences later on?

听

Harrop

Well I think you know as Deborah said it is an incredibly difficult time for the whole team, this is not just about doctors, it鈥檚 about the nurses, it鈥檚 about everybody that has any relationship to the child and family.听 So I鈥檝e sympathy for the position on that basis.听 I think it鈥檚 very interesting that it was Emma鈥檚 mother who said we should go to court because I want to do something.听 Now that to me would maybe be the reason to do it because I think if this mother felt she could better live with a decision that may ultimately, through an appropriate channel, shorten her daughter鈥檚 life if she went to court she should go to court for her comfort.听 I don鈥檛 think it should be done uniquely defensively for the healthcare professionals if it places burden of delay onto Emma.

听

Bakewell

Francis, what do you feel about this?

听

Edwards

I was surprised to hear that mum wanted to go to court, that really took me aback there and so I鈥檓 saying to myself well why is she in that position to actually want to take this court, what else has happened.听 Because I feel very strongly 鈥� and it goes back to what I said at the beginning of the programme about the relationship that they have and the open communication and if there鈥檚 been good communication and if there鈥檚 been every effort to come to a consensus which was what I was hearing within the story 鈥� that there was a consensus within the team and with mum 鈥� and it kind of felt to me that that would be a backward step.

听

Bakewell

Now Emma is not having any nutrition 鈥� is Emma now dying?

听

Harrop

Emma鈥檚 life is likely to be measured in weeks or short months, if she鈥檚 not able to be given substantial nutrition.听 And experience free of infection might be six to eight weeks, that sort of ballpark figure.听 So she is on a course that is more measurable towards her death.听 Whether or not she is actively dying would need to be assessed on a daily basis, so she may succumb to an infection, she may succumb to other complications depending on the details of her case.听 So I think you would accept that she was now approaching the end of her life, that she was in receipt of end of life care but I think whether you labelled her as dying would depend on a daily assessment and I鈥檓 not sure it would be very helpful for her family to do so actually, I think you would probably use a different language with them.

听

Bakewell

Does the withdrawal of fluids cause further suffering?

听

Harrop

I think that it鈥檚 very difficult for us to know.听 I think there are ways to try to limit that suffering.听 So there鈥檚 some evidence from the care of adults who cannot be fully hydrated and who are able to verbally share their experience that if you give a patient good mouth care, good lip care, that their mouth is moist, their lips are hydrated that the sensation of being somewhat dehydrated is greatly diminished.听 So I think there are very many supportive care elements that can be brought into play.听 I think it would be very difficult to say there was no suffering because we talked about kidney function but I think it could be mitigated.

听

Bakewell

I wonder the parents being so engaged with the care of such a child, does it make them particularly resolute and even very demanding, assertive, does it change the temperament of a parent?听 Francis.

听

Edwards

I have come across families, across parents, who have found themselves in a very difficult position because they have had to fight for everything.听 And this mother and I think it was the doctor early on saying if it wasn鈥檛 for the mother the child wouldn鈥檛 have reached this point.听 And I think some of these mothers they have to work really, really hard and it puts them in a certain sort of combative kind of position.听 And I think we have to recognise that but we also have to say to ourselves 鈥� how have we made that 鈥� turned that mother into the mother that she now is, what have we done to her on that journey.听 I鈥檓 not suggesting that this team has done any of that but there are鈥�

听

Bakewell

There are sort of issues around that.

听

Edwards

Absolutely.

听

Bakewell

And also strength of character must matter a great deal.

听

Edwards

Yeah, yeah if it wasn鈥檛 for these mothers these children wouldn鈥檛 be where they are.

听

Bowman

My observation would be even in cases where there is a huge divide in opinion and many people have judged the parent or parents to be acting in a way that is quotes 鈥渃ontrary鈥� to the child鈥檚 best interest I have never felt that parents were motivated by anything other than love, ever actually.听 And so what may be described as resolution or pushiness to me is love, pure and simple.

听

Bakewell

If you were sitting on this ethics committee then Emily what would your decision be?

听

Harrop

I think I would be very clear to look at whether the treatment was now futile, burdensome or inappropriate for Emma in her best interests.听 But I would not be against the withdrawal of fluids if they were felt to be burdensome or futile to Emma.

听

Bakewell

Francis?

听

Edwards

I totally agree with that 鈥� with that approach.

听

Bakewell

And Deborah?

听

Bowman

If the team and Emma鈥檚 mother feel that they wish to withdraw hydration I am supportive of that.

听

Edwards

For me I think there鈥檚 something about the aim of our work has got to be about leaving families with a good enough memory of the life, the dying, the death and the aftercare of their child.听 That for me is my personal mantra.听 That鈥檚 鈥� the aim is to leave them with a good enough memory.听 This mother finds herself in a very difficult position where that鈥檚 now been affected.听 She has 10 years of really good memory work with her child over that time and now that in some ways is being destroyed by the situation she now finds herself in.

听

Bakewell

That description you give of your mantra, is that what you might call, as people use the phrase, a good death?

听

Edwards
Yes, yes.

听

Harrop

And I think you know it鈥檚 very easy to underestimate the importance of a good death unless you鈥檝e been in a situation where you have seen a number of people come to the end of their life.听 And I think a death that鈥檚 well supported and well managed saves the life of the other people involved, whether it鈥檚 the siblings, the parents, or the grandparents.

听

Bakewell

Deborah?

听

Bowman

And your ethical duty doesn鈥檛 stop when treatment stops.

听

Bakewell

Well let鈥檚 return to our story now.

听

The barrister has advised that the case should go to court. Emma鈥檚 mother writes a statement for the court.

听

Mother

My daughter is no longer my daughter.听 She is now merely just a shell.听 The light from her eyes is now gone and is replaced with a fear and a longing to be at peace.听 Today I鈥檓 appealing to you for Emma, as I truly believe that she has endured enough and for me to say that literally breaks my heart but I have to say it as I have always lived my life for the best interests of Emma.听 And now removing fluids is what is best for my child to stop the pain and suffering鈥�

听

Barrister

It was one of those moments that I have to say I will never forget.听 We had court staff in tears because it was so moving.听 It really was all that needed to be said in this case and that鈥檚 why the judge ended her judgement with the full account from mum and granted the application.

听

Bakewell

The judge issues a court order that Emma鈥檚 fluids should be withdrawn.

听

Nurse

The call came through from the legal team to the ward and the ward nurse that had been looking after Emma a lot, who just finds it very difficult to even talk about it now, turned off those fluids.

听

Mother

I can鈥檛 explain the feeling that I had, it was a relief that Emma wouldn鈥檛 have to suffer for as long as what we possibly first thought.听 And I just 鈥� and my heart was breaking at that time because I knew I wouldn鈥檛 have much longer with her.

听

Neurologist

I think it鈥檚 medicine at its raw end.听 When we come to do this profession we come to heal and sometimes it鈥檚 difficult to see how could this be healing.听 I think healing does encompass the whole gamut of humanity.听 Being there with the child and the family until the very end and seeing that through is very important.

听

Bakewell

The team continue to keep Emma comfortable. Emma鈥檚 mother is at her bedside.

听

Mother

We just played music, we laid together in bed.听 My family visited every day.听 Her brothers came up to see her.听 It was just such a lovely family time.听 We celebrated another 鈥� her 12th birthday in hospital.听 So we had a big cake and big party for that.听 But it was a lot of mixed emotions, a lot of tears but lots of lovely cuddles and smiles and laughter and yeah we just tried to make the best of it as we could.

听

Bakewell

Emma continues to breathe for herself and her heart remains strong for nearly two weeks.

听

Mother

Around five o鈥檆lock I said to them I鈥檓 going to make a cup of tea, yeah it was just past five o鈥檆lock, I鈥檓 going to make a cup of tea down the end of the corridor.听 And as soon as I got there I got a phone call saying she鈥檚 going.

听

Nurse

Very, very tough but absolutely did the right thing.听 And I think I鈥檓 proud of us as a team for what we did.听 It鈥檚 a big thing.听 And knowing this family for such a long time and it鈥檚 awful that it came to that and it鈥檚 awful that she had all that pain but I do firmly believe that I 鈥� [indistinct words] I firmly believe we did the right thing.

听

ENDS