AIBU to ask your opinion on whether babies & children are being denied life saving treatment by the NHS?

[MiniTheMinx]

I expect lots of people have heard recently in the press about something called the Liverpool care pathway. If you haven't, it basically entails the withdrawal of drugs, fluid and life supportive measures to people who are at the end of life but controversially also includes people who have had strokes who would survive but need huge levels of care.

Now sick babies go on death pathway: Doctor's haunting testimony reveals how children are put on end-of-life plan.

Until now, end of life regime the Liverpool Care Pathway was thought to have involved only elderly and terminally-ill adults.But the Mail can reveal the practice of withdrawing food and fluid by tube is being used on young patients as well as severely disabled newborn babies. One doctor has admitted starving and dehydrating ten babies to death in the neonatal unit of one hospital alone

Writing in a leading medical journal, the physician revealed the process can take an average of ten days during which a baby becomes ?smaller and shrunken

Are babies being denied life saving treatment? Or are they only being denied life prolonging treatment? Do fluids constitute life prolonging treatment? or are fluids as with oxygen a natural and necessary requirement of life and should never be denied?

Sorry it's the mail but I picked it up this morning because this is on the front page. [NOTE ADDED BY MNHQ: some posters, particularly bereaved parents, may find the contents of this article distressing]www.dailymail.co.uk/news/article-2240075/Now-sick-babies-death-pathway-Doctors-haunting-testimony-reveals-children-end-life-plan.html

My friend was offered this for her son and declined thank goodness, he's almost 13 now and although he's severely disabled he's a happy, loved little boy. He certainly isn't living out his life in a hospital bed, in fact he's rarely ill, he's a bit wonky around the edges, that's all.

How they can justify offering this to the parents of a child just because he's 'damaged' ie he wasn't suffering in anyway, is beyond my comprehension.

I don't agree with the way the Liverpool Care Pathway goes about it, but I do believe that sometimes it's kinder to allow a severally disabled child/infant to die rather than keep them alive when they are suffering and have zero quality of life.

Doctors are always keen to say "we are not playing god" and many proclaim that the hippocratic oath is to prolong life. This seems in opposition to that oath. The oath is used to fend off the pro-euthanasia lobby.

The usual emotive terminology used to make the whole thing appear to be not acting in the best interests of the child- well done DM!

Care pathways for children are different to the Liverpool Care Pathway- they are known as advanced care pathways or ACT

I think the option should be there for the parents.

If my baby was in pain and would have no quality of life i would want the option.

But it should be the parents choice.

What does ACT involve?

www.knowledge.scot.nhs.uk/media/CLT/ResourceUploads/11895/act_pathway.pdf

ACT are care pathways for children with life threatening or life limiting conditions

Discussing this with DP he said, To kill a man is murder, to kill many is to conquer, to kill all is to play god. I think, despite having many years of debate, scientific discovery and access to medicine, we haven't moved on from the Roman practice of leaving the baby outside of the door to die. In Roman times this act was called "exposure" the baby would be left without food/milk/fluids and left to die. We are no more civilised now.

I think many many people with extremely premature babies would dispute that somehow...

No they're not being denied life saving treatment.

But if all concerned accept that this is a child's final illness or that they are dying there is no point in prolonging their suffering.

Care pathways neither hasten death or prolong life.

Pathways like these do not insist on stopping food or fluids, this is another myth pedalled by the gutter press.

It's about comfort care in those final hours or days. I have no idea how I'd feel if it were my child but I'm pretty sure I wouldn't want aggressive treatment to continue if there was absolutely no hope - clearly I've never been in that situation before though.

Sometimes letting a seriously ill baby die with dignity is more humane than intervention after intervention.

I would go further and suggest that in extreme circumstances enthanasia should be available to both adults and children. (Ie. inoperable brain tumour, cancer not disablity on its own prehaps advanced muscular dystrophy.) I would rather a baby in extreme pain/ discomfort was allowed a dignified death than died of stravation or thirst. Certainly neo natal units have over doses children on morphine for decades when the outcome has appeared hopeless. All that the liverpool pathway does is to put such practices into the open.

Ethically it is a difficult decsion and neither parents nor doctors should make those sort of decisions on their own. Parental love makes it hard to accept reality and sometimes doctors are influenced by budgets.

Look at drkategranger.wordpress.com/ for an informed view of LCP from the point of view of a Doctor who is also terminally ill.

My only exp of the care pathway at end of life is the LCP for adults and fluids have been withdrawn. So I dispute that fluids are never withdrawn.

My brother and I chose LCP for our mother when she had a huge stroke in 2009. She had written an Advance Directive and we knew she would not have wanted to survive speechless and immobile. She was given fluids, painkillers and sedatives and died peacefully after a week - she was unconscious throughout. There has to be some way of helping people of any age to die without prolonged suffering, if it is obvious that this is in their best interests, and I hope if I had a desperately sick child who had no prospect of a good enough life, I could make that decision for him or her. I am not saying that the issues with an old person are the same as for a child, not at all.

"but I do believe that sometimes it's kinder to allow a severally disabled child/infant to die rather than keep them alive when they are suffering and have zero quality of life."

oh yes cos you can tell as a baby what kind of life a baby will have !
it is shit like that, that allowed doctors to play god.
absolutely sick comment

There are babies for whom we know there is no chance- such as those with anencephaly. They are vastly different in terms of long term outlook than those who will have a severe disability: I know at least one 8 year old whose Mum was told to switch off life support who has gone on to be severely disabled- with a good quality of life.

Personally there are a few conditions I might consider not prolonging life for, but not by the method of denying fluids: when pregnant with my eldest I had severe hyperemesis and started to slip into a coma, it was a horrible and traumatic experience and would never wish that on anyone, not when there was even a tiny risk they would be aware of the experience (as opposed to intention as obviously a baby is not).

Doctors are qualified as medics but can't predict life quality outcomes in the vast majority of cases.

Bloodybridget hugs- in a case with clear wishes and sedatives I think that must have been the right call, not that I have a right to pronounce but I suspect it's what Mum would want and I need to ask her I guess.

The blog linked to is interesting and illuminating.

I still stand by the fact that I would never wish to have fluids withdrawn, my own experience is that mouth care would touch only part of what being severely dehydrated is actually like, but I think I can understand the choices she makes (I am no Doctor but have worked in nursing and now in an allied field, disability).

I am pro euthanasia in extreme circumstances such as RT outlined, I wonder if advance planning needs to be encouraged a lot more so we can talk about how we as individuals would like to end our days.

Bloodybridget you did the right thing for your Mum ,

My mother went to hospital with a SAH (bleed on brain) haemorrhagic Stroke, she was put on LCP and fluids were withdrawn. We were party to the decision to move to end of life care but not party to the choice to remove fluids. We were told that she could live for up to 10 days. I knew she would die within 3 because of some knowledge of SAH, she died within 3 days thankfully. BUT never again would I consent to the withdrawal of fluids, it was heartbreaking.

There are cases where babies are kept alive, through invasive surgery and obv suffer horrendously but actually go on to recover and have some quality of life.

I feel uncomfortable about the idea that we are no more compassionate or no further forward with this than we were 2000 years ago, in terms of ethics at least.

Oh should have added, no consent was given before the removal of the drip, Only after it was done and I questioned it was I asked to give consent to it retrospectively.

I would never want fluids withdrawn or do that to any of my loved ones. If they needed an end to their suffering, I would rather a quick overdose. I don't really understand this compromise thing of, we won't kill you, we just won't hydrate you.

I would never want fluids withdrawn or do that to any of my loved ones. If they needed an end to their suffering, I would rather a quick overdose. I don't really understand this compromise thing of, we won't kill you, we just won't hydrate you.

As the mother of a very premature (and consequently disabled) child I met and got to know families with some lifelimiting conditions, including a family with a child with Edwards Syndrome. They were offered the choice, and decided not to take it. It was the right decision for them. The child was however only predicted a very short life and died at about 18 months. Those 18 months were wodnerful but extremely difficult.

I also know a few mothers of 23 weekers who with the benefit of hindsight genuinely think it would have been better not to save their children even for a few days or months given the severe disabilities they would suffer, and the very difficult life the child would have had had they survived. Yes some children survive and live with these conditions, but that doesn't mean that it is always right to prolong life.

In my very honest opinion sometimes it is right, but sometimes it is wrong. And in the case of some families it is right for the medics to make the decision as the trauma of extremely premature birth means many many parents need advice and guidance as they cannot think straight let alone contemplate the odds with 23 week babies.

I also very firmly believe that if life is saved in these trying circumstances the families need a lot more support than the NHS and state offer. And until we sort that out from my personal experience it can be very hard to know what to do for the best. But sometimes denying food and treatment is the best, when giving that food and treatment can be extremely painful for a very sick or very small child.

I will probably be slated for this, and I have not quite walked in the shoes of the parents (or medics) who have made these decisions. I do however know that if my son had been a bit smaller, or a bit sicker it would have been a very hard decision to take one way or another. And I defy anyone to judge what is right until they have walked a mile in those shoes.