Inside The Ethics Committee: Ventilation in Children

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    Editor's note: Inside The Ethics Committee returns this week with the subject of Chidren in Intensive Care. You can listen again to the programme or download the series for free. PM

    What happens when children born with life-limiting, degenerative illnesses become so ill they need lifesaving treatment but that treatment has its own serious risks? Should they be kept alive at all costs?

    Ben and Ayisha both have conditions which mean their muscles are getting weaker and weaker over time and they both end up in hospital because the muscles that control their lungs get too weak so they can't breathe on their own.

    Ben is two and a half and Ayisha is 6 months old. They both end up in intensive care with ventilation to allow them to breathe. Ben needs to be sedated because of the discomfort of having a tube down his windpipe to help him breathe. Ayisha has a mask covering her face which pushes air in and sucks it out. She also needs intensive, painful physiotherapy to clear the secretions that build up in her lungs.

    Both could have a surgical procedure called a tracheostomy where a tube is inserted directly into the neck and connected to a ventilator. This would mean Ben could come off sedation and Ayisha could remove the mask. With a tracheostomy both could go home. Ayisha's prognosis is that she is unlikely to live until her 2nd birthday and her muscles will get weaker. Already she can't suck or swallow and she could get to the point where she can't open her eyes. Ben's condition is rarer and the team don't know how severe it is and how quickly his condition will deteriorate.

    Tracheostomy isn't pain free - they would both need regular suction to clear their lungs.

    • Should they be given a tracheostomy?
    • Does it risk them being kept alive but being too weak to express any emotion or able to see or interact with the world around them?
    • If this treatment is given, how do parents and doctors decide when and if it should be withdrawn as their health declines?

    Joan Bakewell is joined on the panel by: Dr Paul Baines is Consultant in Paediatric Intensive Care Medicine at Alder Hey hospital, Deborah Bowman, Professor of Ethics and Law at St George's Hospital, London, John Wyatt Emeritus Professor of Ethics & Perinatology at University College London and Sally Flatteau Taylor, Founder of the Maypole Project that supports children with life-threatening illnesses and their families.

    Pam Rutherford is producer of Inside The Ethics Comittee

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    • Comment number 5. Posted by katy

      on 10 Aug 2012 23:23

      One issue which was not discussed in the programme is the effect on the other children in a family. It may not have applied in Ben's case, as an older sibling had died of the same condition, but I think Ayisha had siblings. They must suffer terribly, both from witnessing the pain and distress of the child under treatment and from the inevitable lessening of attention from their parents who are having to spend so much time looking after the sick child.
      In my opinion 'a quality of life worse than death' would be an unbearable thought if the child were mine. Surely it cannot be the case that life must be preserved just because it can be.

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    • Comment number 4. Posted by salmonvyv

      on 10 Aug 2012 10:06

      What has been missing in my opinion, in this excellent series is any mention of the cost. It would appear that neither the professional medics or the relatives are willing to think about what is a reasonable amount for us all to spend on maintaining life in very special circumstances. I think we have to consider this aspect because of the advances in treatment that malK it possible to maintain life now ,when patients would have died in previous generations. This problem is becoming overwhelming as the proportion of the population receiving acute care increases. salmonvyv

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    • Comment number 3. Posted by Nick W

      on 9 Aug 2012 18:35

      Firstly, congratulations on airing the subject, ethical issues are so often reduced to the Appeal Court to be determined by judges. What a breath of fresh air to hear those from the coal face, parents and carers determining what is best for their child. I have tried to ignore any of the comments thus far, as a pragmatist each:" must must be determined on it own merits" i am a lawyer where everything has to be black and white. This programme demonstrated there is no black and white and thankfully whilst very interested in the whole issue, I praise the ethical committees' involved and the erudite discussion, we cannot change the outcome of many challenged neonates and paeds but I know we are in safe hands in determining and sharing the prognosis, Its not easy but someone needs to take charge. Each is an individual there is no template! Each therefore needs to know that they will be given their opportunity to develop (without fear or favour)

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    • Comment number 2. Posted by newlach

      on 9 Aug 2012 12:10

      The doctor involved in treating the children used the phrase "a quality of life worse than death". It seemed to me that all options for the children pointed to this. Another important point is that the parents of Ben previously had a child who died of Ben's condition after 21 months. Did they have Ben knowing that there was a risk of him being born with the same condition?

      In the case of Ayisha no child born with her condition has lasted more than 2 years. Whether a child dies immediately or after two years there will be great grief for the family. Why prolong the misery of the family and the torture of the child?

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    • Comment number 1. Posted by philip sayers

      on 9 Aug 2012 11:20

      wrong picture of stuart hall.

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