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

I think it is the BMJ article pasted above, I assume it is the effects upon the baby of dehydration, shrinking etc...

Thanks to those who expressed sympathy to me re my mother dying. Although it was an awful loss for me, because we loved each other very deeply, I was so glad for her that she had a good end to her life. No way comparable with losing a child, which is just dreadful.

My sister passed away in 2008, towards the end of her time in hospital the doctors started to talk about withdrawing her treatment and I can't begin to describe the god awful feeling that hit my stomach when they decided that her life wasn't worth saving, because to me, that's how it felt, they were going to play god with her life because in their eyes her life wasn't worth it and that's wrong.

I can see both sides of the coin, no one wants to watch someone they love suffer, I certainly wouldn't want my son to suffer if he was very poorly, but to be told fluids / food are going to be withdrawn just feels a little barbaric to me...

I would like the right to end my life myself if I come to be afflicted with a life-limiting condition or one which I feel will compromise my life in a way I do not wish.

Then we'll have no need for LCPs.

I see no sick posts

If nothing can be done to 'save' me or my kids I would prefer to end my/their life quickly and in comfort

I trust Dr's to make the difficult choices those closest to the situation can't always make

I thank god my beloved nan died drugged to the eyeballs on morphine and in a drug induced coma than in pain and awake

The decision to put a patient on the LCP is made by multiple HCP's. It's not just one doctor playing god.

Some patients can have a very dignified death, some not so much because of their complex medical issues.

You cannot completely make someone pain free unless you sedate them, pain can only be managed. This is a discussion I have had many times over the years with Consultants, Nurses, the Palliative Care teams etc.

Death is a taboo subject for many people, when it is your loved one it is hard to come to terms with. Not every patient will go peacefully like you might see on a TV programme or film.

Fluids or food are withdrawn for many reasons, one being aspiration. This is where fluids will go straight to the lungs. It's like someone drowning in their own bodies. Some people who's organs are failing will leak the fluid out of their arms and legs. I've seen this happen many times.

What really needs to happen, I think in many of these cases, is relatives need to be properly informed of the effects of letting someone continue to eat and drink.
We have had patient who are on LCP, who's relatives are fully aware of the risks, continue to eat and drink.

Also fecal vomiting which can happen if the body has started to shut down or the bowel becomes twisted. I've seen this alot in terminally ill patients who arnt bill by mouth.

Nil not bil

I think I would want to have the option if it were my child.

With regard to the LCP - it is a choice I would make for my parents if I had to,my DP and a choice I hope someone would make for me. I've discussed it with them all.

Seems very cruel if it is the case. Euthanasia by the back door

My Mother is dying. Slowly, painfully and every shred of her dignity is slowly being eroded by her chronic disease. She is young but doubly incontinent, confused and manipulative.

The woman I knew and loved for so many years is gone and what is left behind is an empty shell of unpleasantness.

She deteriorated significantly over a recent weekend. We had a sensible discussion with one of my colleagues about the inappropriateness of ITU treatment and we sat down to wait for the end. She did not want to drink and in any case was too drowsy to do so safely but we were given pink oral hygiene sponges to keep her mucous membranes moist. She was given morphine to alleviate her pain and distress and all was peaceful and calm and it would have been a good way to go.

However, she recovered slightly and was taken off the LCP but she remains frail and incapacitated. The nagging doubt remains in my mind, my Father's mind and my siblings minds that actually she would have been better off slipping away surrounded by those she loved and who love her.

She wouldn't want the indignity of shitting the bed, or telling her beloved youngest child to fuck off back to the foreign country they live in. Prior to all of this she was modest to the point of humour and NEVER EVER swore. This isn't her and this drawn out mode of dying isn't doing anyone any favours let alone her.

Doctors, me included, do not use the LCP as a means of killing patients, we use it to allow recognition of and dignity during dying. It is designed to alleviate distress. It is very unusual for dying patients to be crying out for a drink and drinks should never be withheld anyway. Some patients are too ill to benefit from certain treatments. Those treatments almost ineveitably carry unpleasant consequences.

I rest very easy with MY decision (the perils of being a medical relative) to instigate discussions that prevented her transfer to ITU. I am fortunate that the nature of my Mother's chronic illness and our broad minded liberal family is such that we as a family have discussed end of life many times and I KNOW that my Mother would not want a life prolonged by machines. We are also fortunate that my professional experiences have allowed the harsh realities of high tech healthcare to be appreciated. Some of the recent hospital documentaries have touched on this but in my experience many families have wildly over optomistic expectations informed by programs like Holby City and Casualty.

I also know that until we entered this prolonged and terribly dying phase my Father was convinced that Doctors go around bumping people off and was insistent that he would want all available treatment right until the very end. His views are changing.

The technology that is available in modern medicine can cause harm as well as good. We mustn't forget that. Ever.

So I'm sitting here almost (but I can't quite bring myself to do it) willing a nice neat pneumonia to come along so that my beloved Mother can get the quiet death she wanted and that the rest of us can stop being tortured by her ongoing survival and degredation as a human being.

We made the joint the decision with medics to place my mum on LCP when she was in the very end stages of cancer.

I still believe it was the right thing for her - she appeared to be very peaceful (she was no longer conscious at this point) and pain free. Fluids were withdrawn which was a good thing as it was proving impossible to find anywhere to get a cannula in (those they did manage tissued very quickly so rendered next to useless)

I cant speak for anyone who finds themselves faced with similar circumstances. I think it helped that we knew mums condition was terminal - chemotherapy had givenher kidney failure and her physical condition deteriorated quickly.

Lcp gave her some dignity in an awful situation though i appreciate not everyone will agree. LCP was back then only for people with 2-3 days to live and we were told we could come off the pathway if she showed signs of improving or no longer deteriorating.

YADBU to quote the Daily Mail as if it's a reputable source and to think that anything it says might be true.

All the stories lies in the paper have made me so angry and so sad. The Liverpool Care Pathway is about being humane, and not forcing painful investigations and treatments onto people who are too unwell to refuse or to benefit from them.

I find it so painful to read these stories (in the Mail). I think about all the people whose relatives might be dying at the moment, or who have died recently, and the difficulties they must be going through, without malicious stories like this making their bereavement even more difficult.

Gasman, that sounds so difficult for you and your family, but you sound like a very caring child and a compassionate doctor. My grandmother died a year ago, she was in a home with severe dementia, towards the end we as a family decided we didn't want her to go to hospital to be in a noisy ward and have numerous attempts to give I've fluids. I suppose in effect we put her on the LCP ourselves. She died a few days later very peacefully.

IV fluids not I've

Gasman My sympathy it is heartbreaking, I watched my Father die in hospital six years ago, confused, stripping off and shouting. Totally unlike his gentle self. We were so relieved when the doctors suggested giving him more morphine to control his obvious pain(which had an unknown source), we agreed and he slipped away later that day.
Did it hasten his death? I don't know nor do I care, he was pain free and at peace.
My Mother died 11 years ago of cancer, peacefully and painlessly in her own bed with no invasive treatment or resuscitation heroics.
I am immensely grateful to the medical staff who made their deaths comfortable and ultimately gentle.

I really struggle with some of the media portrayal of the LCP - it seems so different from my experience of it. It wasn't about hastening death, just stopping tests and treatments and needles that weren't going to help at all and ensuring she was pain free.

My mums death was imminent and sadly nothing could be done to stop that. She just needed to be left alone (with her basic care needs being met which were given so tenderly by the nursing staff) it was quiet and peaceful and there is a lot to be said for that.

'The technology that is available in modern medicine can cause harm as well as good. We mustn't forget that. Ever.'

Exactly. As many of you know, my young daughter died in PICU this past July. She developed two infections which migrated to her lungs and, as she had had 5 rounds of intense chemo in the 7 months prior, a stem cell transplant that had not fully engrafted and no real immune system, these infections caused lung problems.

She was not of course, put on any pathway, because the hope was that she had some chance of recovery, until, well, the vent, whilst keeping her alive a while, also killed off her damaged lungs.

It's not a magic bullet. And she is not the first in whom this has happened.

I never thought for a second they were trying to finish her off. Quite the opposite. Her cons and the PICU cons were there for hours after her death, till 3AM. The PICU cons, himself a father of two, came in at 8AM the next morning, off duty, to hand us the form needed to register her death and watch videos of our little girl when she was alive.

She died with as much dignity as can be had in an ICU but believe me, people, it is not a nice way to go!

If there is any other alternative, I'd want it for me or any of my loved ones.

Her end has severely affected me.

And gasman, I'm very sorry for what your mother and family are going through. Please forgive me if this sound heartless and mean, I don't intend that, but I hope your mother does slip away.

I hope so too. The problem is that people who haven't been here think that you are being heartless and mean when you try to say that.

I wasn't pleased when she recovered I was fucking devastated. For her, for me, for my Dad, for the future.

My sympathy goes out to you all who have shared your experiences with end oflife care, be it at home peacefully or in hospital on a LCP.

This is what every HCP wishes for their patients. It is hurtful and offensive for the media to suggest otherwise.

It's really bloody offensive when Papers like the Daily Wail publish this crap. It's EXTREMELY offensive to suggest Doctors try and kill people off to open up hospital beds and for cash incentives. Really really offensive.

I've implemented the LCP in many adult patients and also begged for it for my dying mother. My brother and father couldn't accept she was dying and kept trying to force her to drink and eat. It was awful, she was choking on the fluids. As the body is dying it stops absorbing through the guy so withdrawing food and fluids isn't cruel it's sensible. As for IV hydration, try finding a vein in a dying person to stick a cannula in...go on I dare you. It's nigh on impossible when someone is peripherally shut down and going into multi organ failure. So that means multiple attempts to stick a needle into a dying person and if you are lucky enough to get one in chances are it will 'tissue' really quickly so you have to remove and stab the poor dying person again and again.

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.

If you really can't deal with withdrawing fluids, you can ask for subcutaneous fluids. It doesn't do anything for the poor patient (apart from a needle) but the family is happy.

Anyone who believes that the articles like these are truthful and factual are bloody morons. Go and volunteer in a hospice if you are so horrified about what us evil bastard doctors are supposed to be doing to our patients and you'll see what a bunch of lying wankers the 'journalists' who write this shit are.

Palliative care is amazing. It brings dignity and acceptance to families going through hell. I've seen patients in agony finally having a peaceful death once the LCP is implemented. I've certainly taken patients off the LCP if they have improved. But I will be forever grateful for the LCP for finally giving my mum the painfree death she wanted once my brother and father accepted she was actively dying and dying in agony because they kept trying to give her food she didn't need and oral medications she couldn't even absorb to give her pain relief.

I agree, gasman. I'm glad you don't find my statement heartless. I'm sure your mother is greatly loved and would not want to be in the state she is now.

And people don't realise, too, that often, when a patient is so ill he or she requires life-prolonging interventions and has particular underlying conditions, it is not going to lead to recovery and can in fact, end their life without the dignity they may otherwise had. We learned this the hard way, so did my parents, who thankfully live in a place where Living Wills are common and legally binding, and durable medical Power of Attorney are also common, and they have taken steps to put these in place whilst they are of sound mind.

My personal feelings are that assisted suicide/end of life should be legal and available for people and they should be able to put this in place whilst they are of sound mind and have their wishes respected.

Death is a part of life, much as we as a society don't like to admit it, and just as important as any other stage of life.

My child's drugs and treatments were not stopped until minutes before her cons, the PICU cons and we the parents agreed that the vent had to be turned off. It caused a massive pneumothorax, subcuteous all the way to her hands. I'm grateful to the doctors and doctor friends of mine who explained what would happen if that vent were not turned off. It would have been a death that was traumatic and possibly even painful to our child. We wanted to be able to hold her as she died, so the drugs and machines excepting the vent were removed in the minute or two before her death (she was on dialysis and her liver was showing signs of failure as well).

And as much as we live with the incredible and everlasting grief that comes with losing a child, we had to be strong and permit her as much dignity as could be musted.

It's natural to want to do everything possible to avoid the death of a child, but there sometimes comes a time when it is entirely inevitable, and it's a matter of ensuring they have some dignity v. none and possibly pain (apparently, death from a pneumothorax is one of those cases).

*gut, not guy

Hello there

We've had a couple of reports suggesting that we add a warning to the link in the OP, saying that it may be distressing for bereaved parents - so we thought we'd ask you whether you think that would be a good idea.

Thanks
MNHQ