Care of critically ill newborns: please do this short General Medical Council survey

[GeraldineMumsnet]

We've been asked by the GMC to find out your views on a particularly sensitive topic: who should have ultimate responsibility when it comes to critically ill newborn babies on life-support machines.

The GMC is currently drafting guidelines so doctors know how to act in this and similar situations that arise when a patient is dying and the results will be used to inform their debate.

The survey is open to all parents in the UK.

Thanks
MNHQ

Done.

I had a look at this survey as I wanted to help but I don't think I can answer such a sensitive topic - my heart says one thing and my head says another. Are our opinions going to be used to set/create precedent for this? I know you said above to "inform the debate" but I don't know how influential our responses might be,

I just think its too important to respond to such questions without really thinking about the answer and what consequences they will have.

Just my opinion.

Vicky from the GMC here. Yes, I agree this is a sensitive subject.

Just to reassure you, the 2 question survey is to start the debate. The GMC will be drafting new guidelines for doctors based on responses to the formal consultation which anyone can take part in online here www.gmc-uk.org/end_of_life_care.

The GMC is consulting with the widest possible group of people including doctors, academics, patients and parents to make sure our guidance is sensible and clear and helps doctors know what to do in the most difficult of situations.

We want to hear from as many people as possible to gain the widest range of opinions.

Done, very difficult, but done!

Would you like to post a separate thread for the general guidance? There have been many threads on similar topics on mumsnet.

Personally having seen several people die slowly and painfully I would actually like to see the medical profession able to assist me when I'm ready to go.

But I've also seen a family where some relatives, but thankfully not the mother, would have terminated what seems likely to be a perfectly adequate life.

what/who would be an "independent advocate" in this sort of situation? Someone with medical or knowledge?

Vicky, have answered the questions but the second one is very tricky to answer - what do you mean, fair or unfair? Does the question mean 'is it fair to place the burden of making the decision to end life support onto the parents'?

I think it might be hard to analyse the responses to this question - did you run the questions past any market research agencies first?

Finally, v. impressed you are asking here, good to see attempts to reach thousands of ordinary parents on an issue of such importance.

I worked with the GMC in the past when they were drawing up guidance, as a consumer rep, and I don't remember anyone reaching out to the public in such a way. (Although GMC was doing v. good stuff back then.) Positive development IMO.

done

Done. God forbid I ever find out what it feels like.

What Jojay said.
Hard to contemplate such a thing when you have been lucky enough to have been spared it so far.

I agree with edam... Fair or unfair is an odd choice of words, though I think I know what you mean. FWIW my view is that the courts should have the final decision.

Done, having spent months in SCBU with ds2 it is something I have thought about, but thankfully never had to make that painful decision.

Done. Hope I never have to make such a decision.

Done. After spending 3m as a member of the NICU family.

Obviously I'm not Vicky, but I can imagine that perhaps the point is to either say to doctors 'fine, the public supports you applying for court orders to contradict the wishes of the parents in hard cases' or 'you should think very carefully and only apply for court orders in the most extreme situations', maybe with a list of demanding criteria?

I have the impression (but may be wrong) that is much more common for doctors to apply for court orders than parents.

I have filled in the questionnaire.I do not feel that courts should have the final say.

Oh.and have had to make decisions and all that.

Done. Very interesting to have to think these things through. I also agree with Doobydoo that the courts should not have the final say on the matter - this is a medical decision; no matter what the judges' proficiency in staying impartial may be, their expertise is simply not medical. I say this as somebody who is interested in becoming a magistrate one day.

Here is my suggestion, which I wrote in the questionnaire:

"I think the parents should have an automatic right to seek a second medical opinion. If the second medic and the infant's healthcare teams agree, then they should take the appropriate action. If not, they should take it to a higher, independent medical authority - it is odd and inappropriate that a medical decision should be made in a judicial context."

As someone who's well-acquainted (and now pretty comfortable) with death I understand how hard it is for a relative to make this decision on their own. At the same time there are times when we have to accept, however hard it is, that a person we love can no longer have a fulfilling and sustainable life. I wish I had accepted this earlier when my mother was ill; the medics kept telling us but we wouldn't believe it. Had we listened to them it would have her death less of a shock.

At the same time sometimes medics are wrong or only see the situation through their prisms, which is why I believe a second opinion (different prisms) is essential.

I am so thankful to have never been placed in this situation with a child, and god forbid that I ever am in future.

But surely the courst don't every make the actual decision (forgive my ignorance if I am wrong). They just give either the parents OR the doctors the authority to make that decision - if there is a dispute. I realise that they are effectively making the decision...but it is indirect via enforcing the decision that has already been made by one of the opposing parties.

I agree in part MrsMeryHenry..I know medical is a huge part in the process,but as we know many medical people can be proved wrong re outcomes...it is also an emotional issue for parents and also,in part,for the nurses who are caring for the baby.

Not explaining myself very well[tired].