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Indi Gregory: Baby dies after life support switched off following tragic legal battle | The Independent
(www.independent.co.uk)
this post was submitted on 13 Nov 2023
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ALS is another terminal disease that causes suffering. Does the NHS also turn off the ventilators of ALS patients to end their suffering?
If not, what is NHS's rationale for treating ALS patients differently?
Adults are capable of understanding and consenting to their own suffering and babies can not.
Plenty of adults are incapable of providing consent, for example those with Down syndrome, severe autism, or Alzheimer's disease. Normally, the parent/guardian, children, or siblings are responsible for providing consent when a patient is incapable of doing so.
If a severely autistic man were diagnosed with terminal cancer, do you think it would be appropriate for the NHS to ignore the decision of his parent/guardian and refuse to provide life-prolonging treatment in order to end his suffering?
Doctors and the legal system decide these things and not anyone connected to the NHS but yes. There is a point in cancer treatment where it is more humane to just stop life prolonging treatment and just focus on pain relief. If the patient cant make that call someone else needs to and if the Guardian refuses then doctors and judges should step in.
Despite how it's often framed, the NHS doesn't get to make recommendations one way or the other in this kind of case. Once the patient's doctors are no longer sure that it's in their best interest to continue being kept alive, they make the legal system aware, and a court will take evidence from the patient (if they're in a fit condition to give any, which they usually wouldn't be), doctors, family members, relevant experts, and any other appropriate witnesses, to determine what is and isn't in the patient's best interest. One the court has made a decision (which might involve a lengthy appeals process if the family are upset about the initial decision), the NHS does what the court tells it to. If the patient is capable of experiencing anything other than pain, it's unlikely that it'll be in their best interest to die, so the court will order them to be kept alive.
It's relatively common for anti-abortion and anti-state-funded-healthcare political campaign groups from the US to pay for expensive lawyers to argue in favour of keeping child patients alive and persuade the parents to keep appealing as upset parents saying the state killed their baby makes an evocative headline that can easily be pivoted to make the most merciful option look cruel and callous, and sway people's votes.
There's a chapter on this in one of The Secret Barrister's books - I think the second one.