Warning - emotive topic/end of life care

[Rachyabbadabbadoo]

So in the news today it is now accepted that food and water can be withheld in the case of people in a long term vegetive state to bring about death sooner without legal repercussions.

If I had a very sick pet, and told people that as there was no chance of it getting better I was going to stop feeding/watering it, I'm sure the reaction would be absolute horror - a cruel thing to do. And yet with humans this is humane? A similar thing was used on my grandad towards the end of his life, and it seemed beyond cruel, and traumatic for all concerned. Why do we do this? Surely medicine could be used to bring a swifter and kinder end to someone's life in these circumstances?

There needs to be better end of life training for staff in hospitals, care homes and in the community. I am going to draw up a p.o.a. and advance directive so everyone knows what my wishes are. Acute hospitals need extra beds for end of life patients, or we need more hospice beds.

Laiste yes, many legal systems make a distinction between withdrawing or withholding an intervention and actively taking steps to bring death about.

Morally this is based on two arguments:

• the difference between acts and omissions. It is morally permissible to allow something to happen which would be morally impermissible to act to bring about because of the lack of agency. In an omission you do nothing and the consequence (death) happens (or not in some cases).

• the nature argument: by omitting to start a treatment, or stopping a treatment one is letting nature take its course and therefore there is no moral responsibility if the natural course of events is death.

Both arguments are rather weak. If one’s intentions are the same, there seems to be little difference between acting to brining them about and omitting to stop them from coming about. Imagine two nephews who stand to inherit a large amount if their uncle dies. They both intend to kill him while he is in the bath. The first nephew drowns the uncle, the second one walks into the bathroom while the uncle happens to be drowning and stands by, doing nothing while he dies. It seems that what the second nephew did not do is as bad, morally speaking, as what the first one did.

The second argument is weak because the whole purpose of medicine is not change the natural course of events. Doctors don’t routinely stand by and watch patients die of perfectly treatable conditions because this is as nature intended. A choice is made as to when to let nature take its course to death, so we might as well own up to the choice and actively kill those for whom death is the best option.

I used to work in elderly care, which involved some end of life care. I've been conflicted by one particular thing a few times, and that is when someone refuses food, turns their head, says no or spits it out, we had to keep badgering them, on and on, liquidise food or give fortisip and the like. The people I cared for were always offered food and drink we knew they favoured, or conversations were had over what they may fancy, but if it's refused then it's refused. It didn't feel right to 'trick' someone into taking a meal or badger them into eating. If we'd done that with medication without pages and pages of paperwork and consent from doctors and next of kin we'd be in serious trouble. Giving someone basically a meal disguised as a drink, when they've refused food, I don't think is right.
People should be allowed to eat/drink if they want to and these not withheld but in the same vein not forced, badgered or tricked. Everyone has the right to die as comfortably as is possible, and yes I'm pro euthanasia, if the person wants it, it should be allowed to happen.

Bus, you raise a good point, if someone is refusing to eat do the staff speak to the doctors and family and assess the residents capacity so they know not eating or drinking will shorten their lives. what about people who are unable to make a choice, are they given food in their best interest. I wonder how this new ruling will affect residents in carehomes or people who are conscious but actively refusing food.

MarthaArthur there have been cases where people in a vegetative state have been assumed by the medics to have no consciousness or ability to feel pain. Then they have unexpectedly come round and told a different story.....

My view is that we should assume people can feel pain, and act accordingly. I just wish our legislators had the backbone to grab the bull by the horns and come up with a workable euthanasia law, with appropriate safeguards. The continued fudging of the issues causes anxiety to those who wish to end their lives when they are ready, causes premature suicides so those who are dying can be assured they won't get past the point where they can no longer do it, and causes pain by denial of food and drink. How can that be preferable?

People who are unaware they are hungry or thirsty should be able to refuse food without worry of force feeding.
As your body slowly shuts down, so does your bowels. Force feeding/coercion/tricking only leads to abdominal discomfort that then needs further often uncomfortable treatments.

Hasn't everyone already got the right to refuse food and drink, if someone is unaware they are hungry or thirsty would they be able to tell anyone.

Medication and other palliative care strategies would be used to ensure the comfort of the patient. I think it’s the right decision.

@Penfold007 you are not on a soapbox at all and I am so sorry to hear about your father. In the timescale it happened it must have been truly heartbreaking.

I was going to write about my Nan. In August I was taking her to the cinema, out for our voucher meals... I took her for an appointment at the end of September just to have a 24 hour heart monitor fitted (not medically, something worn inside her bra). I don't know what happened withing the ensuing weeks, she was obviously going into heart failure anyway, she spent 6 or 7 weeks in hospital, but even before then she was saying she was struggling to eat and swallow. She wasted away and finally died peacefully. The last thing I gave her was a slice of fresh melon which she sucked on and enjoyed. I was planning on taking her some the next time I saw her, but she'd gone. She couldn't eat or drink. I'm happy if somebody helped her slip away quicker and easier, she wanted to go. But at least we got that few weeks goodbye, so I am sorry for you loss again Penfold.

cheesemongery I am so very sorry for your loss but love your memories.

Thank you Penfold007 I hope you can enjoy your memories too

Sorry to hear about the losses many posters have had and the difficult experiences surrounding their deaths.

The ruling today was specifically about patients who have been decided to be in a "permanent vegetive state" which is essentially that their brainstem is still working (which controls things like breathing, heart rate etc.) but that the brain above that isn't working. This is thankfully a very rare condition and happens in people who have catastrophic brain injuries. It's completely different from someone dying from a progressive disease, like cancer or heart failure.

My experience of working in the NHS is that palliative care is generally very well done - going by the feedback from families (where I've worked at least).

Examples of adult cases from the UK in the past would be Tony Bland and Andrew Devine (both victims of Hillsborough disaster) and for the USA, Terri Schiavo.

I PP mentioned a "living will" - I've been in one case where that changed the patient's management towards a palliative approach rather than an aggressive treatment one that would leave them alive but very disabled (both physically and cognitively). The first line of it was "I fear indignity more than I fear death" which I must admit brought a tear to my eye.

This is such an emotive topic for me as my dad just passed away 3 weeks ago and I went through this agony of a decision. Every cell in my body wanted to force feed him and pour drinks down his neck as I had done for the 12 years I had helped nurse him.

Towards the end I knew it was wrong to keep forcing him when I almost choked him to death. His ability to swallow just went. I had fed him yogurt or thought I had, turned him 20 mins later and it all pores out his mouth. It was awful to see. My dad always had a thing about having a dirty mouth and would wipe his mouth every time we put a spoon or drink to it. 3 days before his death he stopped wiping his mouth and I just knew it was time to stop. It went against every single fibre of my being but in all honesty he “died” 3 days before he died. We continued with mouth swabs every 30 minutes until he passed away but I never thought I would ever try to stop feeding my dad but he gave the signal when the time was right and I have no regrets. He showed no discomfort until about 30mins before he died and I felt he looked a little agitated so he was given a tiny bit morphine and passed away with us holding his hands 30 minutes later. His last meals towards the end were Ice cream for days. They say the dying brain shuts down the feelings of hunger and thirst and I never believed it or supported it until I watched my father pass.

Having watched someone die slowly and not particularly peacefully from no food/water I'm fully on board with anything that is a step closer to allowing people a quicker easier death. As vegetative patients wouldn't suffer the same distress, it's better than nothing, but I think palliative care leaves a lot to be desired in some cases.

I have to say the palliative nurse that I dealt with was great, but Ward staff who were actually doing the nursing were not. I shouldn't have had to beg for hours for sedatives for a distressed dying woman.

Passthebubbly sorry for your loss .Excatly the same happened with my dad. Me and my sibling both cared for my dad in the final stages of cancer as his wish was to pass away at home .The final three days of my dad's life he stopped eating and drinking and the signs were there so we did the same .I actually work in care but caring for my dad was the hardest thing I ever done .Bascially watching him waste away at the end so in that respect I agree with the OP it is cruel and I think if my dad had been aware how he would end up at the very end I think he would have also agreed.

Dying of thirst would be a painful way to go. It would be better to give a very high dose of morphine.

I'm so sorry for everyone here who has lost a loved one.
But I do have to say there are points where continuing liquids and food are futile. My DF (dear God how I wish he was still with us) died from pancreatic cancer. He didn't want to die, but if he was going to, he didn't want to feel pain or distress. I'm so glad we could fulfil his wishes. He passed away about 36 hours after being set up with a syringe driver which delivered him anti-sickness and pain medication. He could not tolerate any liquid in his mouth.
He was quiet and calm, and I hope, passed away peacefully with the help of the drugs.
He would have asked to go at least a week earlier if it was legal here.

for all the posters who have lost loved ones.

My lovely MIL died 18 months ago. But we had discussed her death many times at her instigation. She was not sick at all and lived in her own home and mostly (with help from me) looked after herself. But she was 96 and was very clear about her wishes for death.

She had filled in a DNR (can't remember it's new name) some years before with her GP. It asked all sorts of questions about the level of intervention she wanted. Whether she wanted food and drink, drugs to treat or drugs to make comfortable, hospital or not, it was very detailed.

As it happened she was well until a few weeks before she died when she had a fall. She allowed them to treat her for that and was in hospital for a few days, but when she came home she was very frail. I called an ambulance when I found her on the floor and vomiting blood one morning. The paramedics stayed with her for hours until the Dr confirmed the DNR and then they helped her get comfortable. The nurses who came to see her daily simply kept her comfortable with morphine in a srynge driver. She died after a couple of days, peacefully and in her own bed.

Personally I don't see a difference in administering a drug to withdrawing food/water. There is no reason on this earth that we should leave people to die whilst suffering. MIL was not going to recover, she had already withdrawn her permission for anyone to give her food/drink, the morphine dose could have (should have) been enough for her to slip away after the first day. I do believe though that communication is the key. MIL had a peacefully managed death because everyone was totally clear about her wishes.

I agree OP

I've seen someone beg for food and it wasn't allowed. There was no reason to feed her through a tube. This was the days the LCP was common but I'm under the impression it's still being done.

I don't get it. No one should have to wait 2 weeks while hungry and thirsty. She would have loved a lethal dose of morphine.

It's a very difficult balance but the comparison in the OP isn't the same. It's very important to appreciate the difference between the providing food and fluid and providing artifial nutrition. They are ethically not the same.

If your animal was sick of course you wouldn't deliberately refuse to give it food or water it would otherwise have taken, but neither would you put a tube down its nose to feed it. There's a very big difference between withholding food and water (even in the now outdated Liverpool care pathway this wasnt done, if a patient could take something orally they were allowed it), and not providing ARTIFICIAL nutrition. In terminal stages of diseases or in elderly care artificial nutrition is rarely used unless expressly wished by the patient or unless it provides clear symptomatic relief. Proving artificial nutrition in these cases goes against the bodies natural process of decline which includes stopping eating and drinking. By providing artificial nutrition you are not improving outcome, you are simply prolonging death and that is not ethical.

In the patients being discussed today it is clear that it is only if the doctors and family agree. Many patients in PVG can live for decades supported purely by artificial nutrition but with no quality of life. Without the nutrition being started these patients would have passed away from their injury/disease so the arguement is that there may be cases, if medical staff and family agree, where this should be allowed to happen without always having to go a high court for permission.

I felt the same way with my Nan. My grand father said he didn’t want them with holding fluid and nutrition and yet they went ahead and did it. I hate that she died that way. We all had a nice visit when she had perked up a bit (but no chance of recovery), we were all gathered and they gave her some insulin (no idea why they were still doing diabetic stuff), I so wished they could give her a massive dose and she go off peacefully with us all there having said our goodbyes. Instead it dragged on and she died without one of us there

Dying of thirst would be a painful way to go. It would be better to give a very high dose of morphine.

The two are almost certainly always done simultaneously. They are not mutually exclusive.

I'm glad of the ruling.

If I was in a permanent vegetative state it's what I'd want for myself and my family.

The belief that people in these states feel "pain" is one of the reasons that it's taken so long to even get this far.

Vegetative means just that - no sense of "pain" or other feelings....

My experience of it is with relatives having cancer and being at the end of their lives. They do want food and water but are unable to have it. They are in pain. The dr ups the morphine and who knows if they actually die of the morphine or eventual organ failure.