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

'And do you know what else, adding more fluids in increases the amount of respiratory secretions the patient suffers. Anyone who has heard the 'death rattle' of a dying loved on knows how awful it is, why make that worse by flooding the poor person with fluids they just don't need? And overloading them with fluids will put their dying organs under more strain anyway and will probably hasten death.'

Or leaned in to kiss them and under their skin it feels like touching bubble wrap.

Not good, people. And I can promise you, even though it is killing me to say that, if I had a crystal ball and could see how this would go, I'd have never agreed to transfer her to ICU. Nor would her cons.

I'd have taken her home and she'd have died in her bed with us connected to nothing.

Sensible, Rowan, although it doesn't distress me and my child died in PICU, others might find it so.

Thank you Gasman for telling us your story, you seem to be a very caring but very practical and stoic person. It is heartbreaking watching someone's personality disintegrate when you love them for who they were, the real person before their illness.

I actually asked for my mother not to be taken to ITU following her second sub arachnoid haemorrhage. The issue had been spoken about, my mother's wish was not to be left with severe disability. She also had COPD and her life was limited.

I am really not so certain though that I would feel the same way about a child. I very much hope, as is natural that my children should out live me. I would find it very difficult to give up on them. Maybe this is why doctors and health staff have to take the lead.

What I do think is worrying though, is that if health trusts are given incentives, then their incentives and motivations can be at odds with that of the health care staff.

I also think that doctors need to stop using the hippocratic oath as an argument against euthanasia. The cover up over Morphine continues as does the denial that dehydration hastens death????? At some point in the future I hope this will change.

Very good idea Rowan.

Rowan, please do if you think it would stop someone being upset or offended.

Thanks all. We've added that now.

Expat - I know I've said this before but you made the best choices you could for A. You made the choices we would all have made.

I never thought that I would welcome death for someone I love so much. I always thought that no matter what - I would prefer to have them in any way, but not dead, having to deal with all that entails. But there are worse things than death, when there is no hope of getting better. A the end we begged my mum to just let go, it was a relief when she finally did. And it's not pretty even though the last few days were eventually peaceful. A few weeks earlier she had self overdosed on those morphine lollipops and had collapsed and slipped into unconsciousness. Just wish they had let her go then than bring her round only to go on to face the last two most god awful weeks you can think off. It would be kinder to administer some drug and let them slip away peacefully but until that is legal then I can't think of another way of doing it than has been discussed here.

We use the LCP all the time at work and it's an invaluable tool in helping to ensure that the terminally ill people we have are cared for appropriately during their last days.

Sometimes, fluids need to be withdrawn otherwise the person simply starves to death. We had an elderly lady who was obviously nearing the end and we were giving her fluids to help keep her comfortable as she wasn't drinking. The doctor came and signed the DNAR. Her relatives didn't want fluids to be withdrawn. The fluids continued and so did the lady, gradually becoming more and more frail, obviously in discomfort and at risk of developing pressure damage despite regular positional changes. We explained to the relatives that this could go on for quite a while if the fluids continued. They didn't want that for their loved one, so agree to discontinue the drip. The lady did continue for quite a while after they were discontinued, but eventually died peacefully.

The general public have been led to believe (by people like the DM) that to withdraw fluids is an act of outright neglect and cruelty without actually realising how the body works when it's in the process of dying. In the instance of the case I described, giving fluids was a bad idea and simply prolonged the sad process. People nearing the end stop drinking and eating for a reason.

I'm furious that the LCP is being written about in the way that it is. You can't force people to remain alive. If people are being placed on the pathway in error, or by carelessness, or by a lack of judgement then that's the fault of the practitioners - it's not the pathway to blame, it's the people who use it. I have never personally seen it used without wisdom and consultation with the relatives.

Has anyone linked to this yet?

drkategranger.wordpress.com/2012/11/04/end-of-life-care-through-the-eyes-of-a-doctor-and-a-patient/

Dr Granger is a young doctor who is also terminally ill with cancer. She uses the Liverpool Care Pathway in her own work and has written very eloquently about what it really is about.

Well said hidden I am so so so sick of the scaremongering relating to the LCP. As always the press whip everyone into a frenzy without actually presenting any type of balanced view whatsoever.
I nursed before the LCP was in widespread use and believe me, nursing dying patients gasping for breath and drowning in their own chest secretions was heartbreaking. The LCP changed end of life care irrevocably. Now we have teams of consultants who are too fearful to even prescribe any of the palliative medications and I have already seen a return to barbaric and in humane treatment of the elderly, terminally ill all because of a political agenda.
Even more concerning to me is the lack of response or explanation from the Royal Liverpool, the RCN, the NMC, Macmillan, Marie cure etc. appalling.

For my own part, I am completely against euthanasia, medically and morally, and I think the Liverpool Care Pathway can be very helpful in ensuring that patients are not forced to eat and drink (if they want to, that's fine, but often it is the family who want them to more than them) and that appropriate medications to alleviate symptoms and to try to give that person a good, dignified, pain free death.

A Doctors job isn't to prolong death, once someone is dying there should be a way for them to go with dignity and with out pain. that is what i would want for me or anyone in my family.

I linked up thread Bartlet Have just finished reading her books, an amazing woman who has the courage of her convictions.

I thought must have, life, but must have missed it when I was skimming through. She is an amazing woman!

YY, when someone's lungs aren't working, they develop secretions they cannot expunge and that make it very hard to breathe. Our child was old enough to express this, and so we saw it, a baby probably can't.

I'm just going on my personal experience here, and that of two other families I know personally whose children died from non-cancerous conditions but in PICU whose children were not babies (my child had cancer).

Maybe it's just our experiences, but that team tried everything. The bed didn't matter.

I've wanted to read Dr Granger's work, but am not really in the right place just now.

Even so, my own experience has taught me that death is a real anathema to most of our society, and as a result it's not looked on or treated as a stage of life as worthy of treatment and dignity as other stages of life, even though it is a certaintly for all of us.

I feel this needs to be addressed.

My Dad made the decision to not 'fight' (I hate that term) the cancer he had, when it was found it was already too late, so he had the choice of continuing and enjoying what was left with some drugs to take the pain away or fighting a pointless battle that would ruin the short time he had left and maybe extend it by a few months.

If my time comes like that I will do the same and if my children are in the same position then I will make what I think is the best decision for them.

Sometimes the only choice is between sorts of death.

I hate the entire thinking that goes around cancer. Fighting. Battle. Be positive. It's a fucking disease, people? Do you go around saying, 'Oh, she lost her battle with vascular dementia?' 'He lost his fight against heart failure'? No, you don't.

Do you know what guilt I've felt? That if I stayed more 'positive' my child might have beaten her SHIT odds? She had a mutation (FLT3/CD135/IDT135 pos) in her cancer that presents in only 12% of all paediatric acute myeloid leukaemia (AML), which account for 20% of paediatric leukaemia. She had a stunning response to her induction round - she went from 60% AML to 3% with the ten-day induction/ADE round. That fucking mutation was still there. This mutation behaves differently in children. It is associated in an only 19% OS. When she didn't remit of it following induction, that rate dropped to, well, near enough FA.

I have met others who believe I wasn't positive enough. I shit you not. She died because I wasn't positive enough.

I'm sorry it's so shit, truly, I am, that little girl's death will certainly kill me sooner rather than later and I'm not sorry for that at all, but you know, I'd rather she got the chance to die at home in her bed than in that fucking ICU.

And I don't believe for one minute that any doctor, even the most cold-hearted I met and there are three of them I know by name, would have hastened that. I even had one 6 days before she died tell me flat out he wasn't convinced her lung damage was reversible but he did not stop for the sake of a bed.

The boy in the room next to her was there for yonks, all but by them given up for dead from his e.coli infection.

I wish there were a happy ending, but there isn't. He is seriously, gravely and permanently disabled from it. But they did not hasten his death or advise in that manner.

So I think articles like this are shite and do a disservice to those people who did what they could and do what they can to save children.

My bil died at home. He was diagnosed with lung cancer from a chest x-ray. They didn't even need to do a CT scan to give him a terminal diagnosis. He died at home because he knew his prognosis and was able to decide that's what he wanted. It wasn't easy. Macmillan nurse was pretty useless but the Marie Curie nurses were wonderful. He died at home with his wife and his children there. There were no hospital admissions. He never had a single night as an inpatient in the 5 months he was ill. Painful as it was and is, I know that my sister did her best for him and he got the death he needed. The death everybody should have.

It makes me so angry when people criticise the LCP because until you've been there and seen what death looks like you do not know, you DO NOT KNOW. And if you've been there and seen it and still cannot see why the LCP is a wonderful thing then I have nothing more to say to you.

Agree NorthernLurker. Is there really another better way at the moment? We had my mum at home her last few weeks, so glad it wasn't in the hospital where she had been unhappy and not very well treated in the weeks leading to her death. The Marie Curie nurses were amazing especially the one who was with her on her first night home and her last and passed on some important information about mums last wishes, offered to do the ironing and take the dog for a walk.

It would have been my mother's birthday today. I have seen probably more deaths than most and without a doubt my mother's death in hospital on what is referred to as the LCP was quite possibly the worst. Not because of the pathway but probably despite it and the nursing care was abysmal. The doctors were kind but incompetent having missed the first bleed and prescribing anti-coagulants which ultimately contributed to her death.

Years ago I used to nurse (exchanged this for social work on the grounds that S/w is more compassionate) I worked with Nuns and the level of care given was exceptional at end of life/ This was before the LCP was introduced. Actually nothing in the guidelines differs significantly from the care that was provided before???? we didn't offer fluids to people incapable of swallowing but people were given oral care. However I can attest that my mother on an NHS ward nursed.

So what is happening? I do believe that serious questions need to be raised about the validity and ethics of euthanasia, .... people should have the right to a dignified and if they so wish it swift exit. This is particularly relevant to people with degenerative conditions who may live for months without any quality of life. It certainly would make sense for people who's prognosis is almost certainly without any doubt...death.

I also think that the LCP might work just fine in principle but it is the practice that patients relatives are witnessing. And it is in practice that it may fail to offer the right level of care....One could argue that short staffing is the crux of this. I know that the nursing records for the night my mother died are missing! ( I have the others sat on my desk!)and they didn't know the time of death. The night before she hadn't been checked, turned or given oral care. The time of death recorded in their notes and on the Death cert, is an estimate. I spoke to the sister and between us in discussion we estimated the time of death. In effect I helped them with an administrative headache caused by very poor nursing.

Unless the NHS is a bottomless pit of resources and excellently motivated staff I would expect that at some point in the near future euthanasia will be made legal...... but not for the right reasons.

I'm not an expert on this, but what is the best way to give someone dying the easiest, least painful, least upsetting death? I only have experience with mu mum. Obviously some injection which lets them just drift peacefully off quickly in their sleep would be preferable but not possible at the moment.

I found once they introduced the use of syringe drivers into the nursing homes I worked, patients tended to be more comfortable and pain free. It gives a continuous dose of morphine which is better than injection/oral which starts to wear off before the next dose can be administered.

Most deaths in hospital occur at night or on weekends. That is because there are fewer staff and fewer doctors. The doctors you see are most likely on-call doctors. They most often know nothing of the history of the patient, they respond to emergencies, not routine ward rounds.

As for night time, most wards have between 30 - 36 patients. They are nursed by usually 4 members of staff per ward. 2 Qualifieds, 2 HCA's.

It is not acceptable for staff to not know that a patient has died, alone and maybe in pain because there are not enough of them. This has always been an issue, nothing changes though.

In fact, it is getting worse.