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    • If this treatment is given, how do parents and doctors decide when and if it should be withdrawn as their health declines?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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