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?

My relatives have lived about 4 days with only sucking an ice cube type thing. And lots of morphine.

Medicine would be better but coming from someone who has a permenant feeding tube (peg-j) and at times even have to use it for plain water, I think this may be better than the alternative.

Lots of issues come with feeding tubes and they themselves can cause a lot of added pain, discomfort, infections and other risks.

I believe it is the case that medical staff no longer have to go to the court of protection to get permission to stop even if the family and medical staff are in agreement. Not a change in the way end of life care is given.

I am a huge advocate of end of life self determination.
My mother had a neurological degenerative disorder from which there was no coming back. She would have happily ended her life, with medical help, a long time before her actual death had it been available. She could not do it herself due to personal experiences and being from a generation who 'owed' it to those who fought in WW2 (not something I would be swayed by).

It took her 8 weeks to die. She was bed ridden having refused any more medical intervention. We (her immediate family) would have much preferred if she could have done similar to Dignitas - drunk a potion surrounded by her family, in her own home.

She was fortunate to die in her own home and myself and 1 sibling were there, the others nearby that they were there within 10 minutes.

Under the circumstances, we did her proud in how her end days were. She didn't appear to be in pain - was on a pump with morphine and other drugs - but as her ability to communicate diminished you could see the sadness. And that was hard.

We tried to subtly say to the medical team (I requested a multi disciplinary meeting) that they could give her a 'double whammy' of morphine and we wouldn't object. I really couldn't understand the need to keep her 'alive' just to die??? The expense of the drugs, the community nursing care, the GP, etc. for what?

She basically withdrew the food and water herself as she knew that was the only way and, obviously, as she became weaker she was unable to even suck the sponges we offered her.

Given the options we had, it was the best death we could have hoped for but it wasn't the best death she could have had.

These stories are so moving. I appreciate the posts from those that work in the medical field, and am aware that my views are very limited simply by what I have seen in front of me. Thanks for all those who replied, lets hope that we start to move forwards in the right direction. Ultimately I'd like to have, if possible - a happy death, where anyone involved, medical, family - do not have to suffer any upset or trauma beyond what is normally expected.

This sounds like the Liverpool Care Pathway done properly. It was withdrawn after it was repeatedly misinterpreted, misused and abused. Hopefully they will get it right now? Forcing a person to stay alive when they are reaching their natural end is inhumane.

I really couldn't understand the need to keep her 'alive' just to die???

Having watched someone die a horrendous death, it angers and distresses me that we insist on this. It's barbaric and inhumane.

It was like having to watch somebody I loved dearly be tortured.

I would really urge everyone to made an advance directive. I’ve worked in elderly and palliative care for 30 years now and I can’t begin to describe the awful things I’ve seen due to people not being allowed to die. Repeated courses of antibiotics for chest injections and feeding by PEG tube is what you need to be thinking about in terms of whether or not you wish to be kept going in the event of catastrophic injury and illness.

Painkillers are routinely withheld as well, so don’t bank on being comfortable either. I often have to fight to get my clients onto decent pain relief. The nightmare is the reality in this country. We have a sick attitude towards the dying and people in minimally conscious states. Sick and perverse.

Written and performed by a US doctor.

Having watched someone die a horrendous death, it angers and distresses me that we insist on this. It's barbaric and inhumane.

Imagine having to go to work to be forced to do this to people. I trained so I could care for people and relieve suffering, but instead I’m doing the opposite it’s a total head fuck.

@CeridwensCottage I am so sorry you have to go through this in your place of work. It was caring empathetic professionals such as you that I truly felt for as DF and DSF endured their final journeys.
DF didn't want to die and didn't want food and fluid withdrawing - he (and us ) were given NO choice.
DSF wanted to be in control of his destiny, the consultant we met on his final admission to resus completely 'got' him and respected his choice. He & I got a few minutes to say goodbye before he was gently sedated to minimise his distress. The following days were not easy.

This is currently being done to my dad it's times like this I feel assisted suicide should be allowed. He's suffering so much it's heartbreaking to watch

I've just read back on this thread and realised my earlier comment was wrong, but I'm not quite sure how to word it so it might be long-winded....
Looking back, DF asked me over and over if I thought he was going to come home from hospital.
At the time, I gave him an honest answer - that I thought he would.
I realise now he had known for much longer than the rest of us that he was seriously ill (and it was not really spelled out to DM and me that his death would be sooner rather than later. At the time you don't really take it in.)
Once he had been told his cancer was terminal, 26 days before his death, he said several times 'you'd think there would be a pill for this wouldn't you?', meaning one to end his life. He already had a DNR on his notes at this point. DM and I both agree that should he have been allowed to come home (he was too ill), he would probably taken his shotgun to himself.
Yes, his passing was peaceful, but he had been in severe pain for months. Once he knew it was certain he would die, he didn't want to keep hanging on.
As I've often said on here to pet owners who have lost much-loved members of their families (and meant it), it's a kindness we can do for our animals, but not for our relatives it seems.
Sorry if that upsets anyone. (Frankly, it's very painful for me to type.)
Yes, the Liverpool pathway is wrong, and yes, there definitely needs to be another way.

My vague memories of the night my dad died 29 nights ago. He has been on a driver for pain for 8 days had stopped eating or taking fluids 4 days prior, 30 mins before he died he became a little agitated, having been so calm it upset me and I asked the nurse to give him something to help, I will never know how much they gave but he calmed immediately and passed away 30 mins later looking 20 years younger and a look of relief on his face. I know for a fact my dad would have taken his own life 12 years ago had he known how his life would become. But me.. selfish but I have adored the last 12 years with him. Holding his hand as I helped him into the next world was just wonderful. I do think the nurse gave him something to tip him over the edge as he had shown no signs all night other that becoming agitated - do I regret asking for it - no!

The Liverpool Pathway was fine, it’s just that hospital staff misused it. I followed it for years in care homes and never saw it misused, but we’re fully experienced in handling deterioration and death, just as hospices are.

The reason why people aren’t permitted to help someone on their way is because human life is valued so highly, even though we’re biological organisms and can feel pain and suffer in just the same way as a suffering pet. Religion is mainly to blame for this. Another effect of us having had a Christian background in this country is that suffering isn’t seen as being unwanted or something to be avoided. Christianity teaches that because Jesus suffered, we should be prepared to suffer also. Women in childbirth are also expected to bear the pain as it describes that this is what we have to bear as a result of disobeying god. We’re also prohibited from taking a human life or helping someone take their own life. Don’t underestimate the power that these beliefs have, even though most of us no longer believe this stuff and often actively disagree with it. This religion is present in the background due to the people who make the laws and their beliefs.

Religious belief has a lot to answer for, especially when it’s permitted to influence how much suffering a person is expected to endure.

I know someone whose baby was born with medical issues and at 6 weeks old the doctors wanted to 'not prolong life' by removing his nutrition. The parents were completely horrified that their conscious baby was going to be left to starve to death. The doctors tried to reassure them that the baby would be kept comfortable whilst his organs failed over time Thankfully he died quite quickly (and unexpectedly) before the court case went ahead.

Im 1 trillion % agree with you.
You certainly won't get an argument from me on this one.

Even if a Judge agrees , the method would be the same though

So I think the law won’t xhange the actual method

Amazing posts of memories.

There are a lot of different reasons why people might not be having nutrition or hydration when near to death. It's really important that families understand what the reasons are in their relative's case, but it's a bad time to take in medical details. I agree also that sometimes it's the wrong decision; sometimes it's wrong with hindsight only.

Quite often it is detrimental to the person to take nutrition and fluids.

The body naturally winds down as death approaches and taking fluids can cause nausea, vomiting and food can cause the same and intestinal discomfort as well. The kidneys and heart can struggle to cope with fluid and the person will begin to retain the fluid which affects breathing and is distressing. If the person is too debilitated to swallow properly, the fluid can go down into the lungs causing a chest infection which is painful and distressing.

If the person feels able and wants to intake fluid/nutrition or even just ice cream or sips of juice then of course they should be able to, but I have seen relatives try to get substantial amounts into the very weak and dying and then we have to help the patient deal with the aftermath - vomiting, pain, diarrhoea etc.