Why do we (as a society) do this?

They never pause to think about what happens after they "save" the life, and that is a gross failing in our medical system.

This is exactly how I feel.

Such a heartbreaking thread to read.

This is food for thought indeed. My DM suffered from dementia for several years. She was bed bound, doubly incontinent, non verbal and incognisant of her family and surroundings. A team of people managed her and kept her alive, including my Ddad, who sadly passed away before her. She had no quality of life at all and, as a person, had died about 5 years before her eventual end. If this is what is in store for me I don't want it, and really need to put these wishes down somewhere. As a society we really need to do something about this.

My husband has terminal cancer, he was doing OK until he had a massive stroke. Now his tumours are growing, he has lost the use of his right hand side, he's lost his speech and he is no longer a candidate for chemo. I wish the stroke had never happened but, if it had to happen I wish it had done its job, watching him like this is hell for us all. It is absolutely not the way he would want to live his life and yet, the worst is yet to come.

Feel the same, my darling mum is in advanced stages of dementia. She has zero quality of life and to see her reduced to a shadow of her wonderful former self is utterly heartbreaking.

It is completely illogical that someone terminally ill should have to suffer indescribable pain, distress and other horrors so that cancer or another disease can slowly destroy their body and kill them, rather than them being able to choose the point at which they have had enough.

It is perverse. Utterly perverse.

If you have a religious belief that your death is meaningful if you allow it to slowly fade away "in God's hands" then that should be your choice. I have never seen anybody propose to take that right away.

But it is unforgivable to force such a death on other people who do not share those beliefs and do not find such a tortured death to be comforting or meaningful, but traumatic and distressing.

When my granddad was kept alive by machines at the age of 85 due to having cancer and mrsa, my mum and auntie just wanted to put a pillow over his head to end the suffering to them all. Alas, they had to wait another 3 weeks until a professional gave them the option to turn support off

Quality of life is subjective but in general I would say what doctors think is an acceptable quality of life isn't good enough for me.

I agree. I think that is a product of a training culture that actually does not place value on quality of life and creates a mindset of doing whatever it takes to prolong life without any consideration as to whether the person will be left with any life to live/worth living after the intervention.

I also find almost a denial amongst medical staff that dying is ultimately the conclusion for all patients.

I have had to have conversations with my own doctors about the point at which I want palliative care only. It was a battle to get them to even engage with that conversation or accept that yes, I was free to make that decision and yes, it was a legitimate decision.

If in the process of "saving" my life you leave me so damaged I cannot live my life in any meaningful sense, then what have you achieved? What were you trying to achieve? Where do your ethics fit into that picture?

They never pause to think about what happens after they "save" the life, and that is a gross failing in our medical system.

I hope that in my lifetime our laws will recognise that it is a basic human right to choose how and when you die-for the reasons PP have said. My body, my choice.

My mum always said she'd rather have a pillow over her face than live with dementia.

But then she got dementia and doesn't believe she has it. So a long slide into indignity and death. She doesn't even know who I am and just thinks I'm some vaguely pleasant woman.

My dad appears to be planning on drinking himself to death in his local. I don't have a problem with that. I hope to god I've got more of his genes than hers.

The first thing I'd put in my advance care directive is no flu jab and no covid jab (I am fully vaxed now). If one of those comes along when I'm in a care home, let it come.

part of the problem is that the right paperwork isn't always there at the right time, and the default is always to treat. my aunt was taken from nursing home to hospital and plugged into IV antibiotics even though it was not clear that was in her best interests. finally, there was a directive that she should not go back to hospital - she hated it and it did not help the dementia.

I am so sorry you are going through this op, it seems so inhumane to watch our loved ones suffer like this.
My own lovely mum has Alzheimer’s and is in the late early stages, we are going to have to watch her suffer for years to come and it breaks my heart every minute of every day knowing her dignity is slowly being chipped away every day and we are helpless to do anything to make it better for her. She was the best mum and looked after us so well and we don’t know how to help her now that she needs us the most. She doesn’t want to live anymore.
My MIL passed away a year ago from metastasised bowel cancer, her death was absolutely awful and will haunt me forever, she was in terrible pain, could not keep from vomiting and having horrendous diarrhoea all day, everyday. There is no way I would allow any beloved pet of mine to suffer like this yet we are unable to do this same for humans so we have to watch those who we love the most suffer from pain and unimaginable loss of dignity and the poor underpaid carers/health care workers have to clean up after them and have to listen to these poor patients begging them to put them out of their misery as my poor mil did. It’s heartbreaking all round and I hope and pray laws will change in the not to distant future.

But it's legally necessary unless some has upon their person and viewed by the paramedics a DNR.

I was simply reflecting on the cultural idea about what constitutes "playing god" in medical care. We're very quick to label allowing someone to say "enough" as "playing god", when actually isn't dragging out an inevitable death in such inhumane ways the unnatural act and example of attempting to play God?

Strictly speaking, it is actually not the case that CPR can and should be administered to anybody without an Advance Directive refusing CPR. Legal obligations on medical professionals also surround not inflicting harm by attempting resuscitation when it is not in the best interests of a patient and will cause harm.

But people have lost sight of that because we have become obsessed with avoiding death or doing anything that might in any way be considered to have hastened death.

I do agree with you that it is better for people to have conversations around CPR and ADs in advance. If people understood what CPR entailed I am sure many would make different choices. I think some decisions around wanting CPR are made through fear and lack of information. (Although I do appreciate that it was handled horrendously badly for many people during covid - being imposed unjustly, being raised without any compassion, etc. That I don't agree with at all.)

If we had better conversations around death and dying it would help. It would be less frightening if it was talked about, not shushed.

Quality of life is subjective but in general I would say what doctors think is an acceptable quality of life isn't good enough for me. My Advanced Directive/living will is pretty brutal.

However, I encounter patients of huge frailty and great age every day who say they want everything done. At that stage there actually may not be much that can be done but they nonetheless continue to exist and although I find it really difficult to keep trying to intervene, it isn't for me to take that decision away from them.

My mother has zero quality of life and I know her previous self would 100 x rather be dead. But to others and particularly to those in healthcare, she is walking around, chatting and building relationships, eating and drinking, enjoying phone calls and visits. I know they don't understand what I mean when I try to say what our views are. Because ultimately it is her doctor's call. She never did a health POA so we have no right to speak for her, and she has no capacity to speak for herself.

Yes getting a DNAR sorted is important. Mum has had one for the past two years or so. Each time she has an ambulance attend I get it out and it goes with her to hospital. She also now had a PEACE plan document which means no more hospital for her

There must be an element of liability creeping into the Uk my dad had a medical power of attorney in progress which was in my name. My dad was admitted to hospital while I was in holiday a few hours away . I was called repeatedly by the doctors as he was refusing treatment and wanting me to talk to him etc and wondering how quickly I was going to get there to sort it out. he had wanted to die for years very little quality of life numerous ailments and of sound mind.

With respect user1641832968632486258 I said that we need to be careful not to assume that everyone feels the same way; not that no one should have it because some don't want it. There is a world of difference between the two. And I think I explained in my last paragraph that elderly vulnerable patients without families could potentially be subject to those assumptions in a cost-cutting NHS.

I wish I hadn't posted now tbh. I am not posting in total opposition to euthanasia either! I just think we have to be very careful that it doesn't become an easy replacement for good care.

My view is genuine and I am sorry if I have caused offence by expressing it.

I would just beg everyone on here to put it in writing and get advice on what to do with the document- mine is on my GP record. Telling a relative is certainly better than nothing but putting a dated, witnessed document of some kind into the records is a lot better.

I didn't dismiss the option of euthanasia altogether, I said that the emphasis should first be on providing better treatment and care for those already suffering.

1. At what point would it be sufficiently "better" for you to countenance assisted dying laws? That sounds like the same ideological stance as the hospice movement use to block euthanasia, and there is no clear end point.

1. What about all the people forced to die inhumane deaths in the meantime while we wait for your moving target to be achieved?

High quality, humane care and support should absolutely be available to all as standard and without a fight or powerful connections being required. But assisted dying should be made available alongside for those who want it.

People are up in arms on the covid threads about elderly people all being asked if want DNR but the alternative is really brutal treatment with no dignity at all.

An oncologist we know says that you would be surprised what people are prepared to tolerate in order to live.

Which fails to account for how much of that behaviour is driven by the desperation of being denied a chosen death and trying to make a horrific situation "tolerable".

When humans have no way out of a horrific situation they shut down and try to find ways to endure. That does not mean they should be forced to suffer or denied a choice to exit the suffering.

Besides which, it's completely irrelevant that some people would not want the option. Nobody is proposing compulsory euthanasia for all with a terminal illness.

Just because some people would not want the option, does not mean it should be denied to those who do. I think that's an incredibly selfish and inhumane argument to make to block access to a humane death for those who want it.

[quote dontsaythj]@Slingingcontest

Unless everyone wants it, then no one should have it available?

If someone is of sound mind, then they should be permitted to decide their own end, rather than go on in suffering and indignity.

Read the accounts here of what the end looks like for many people.[/quote]
I don't want to start a series of tit for tat posts as this is a very sensitive subject, and the op's circumstances are v upsetting and difficult. Respectfully, I think you may have mis-understood what I have written.

I didn't dismiss the option of euthanasia altogether, I said that the emphasis should first be on providing better treatment and care for those already suffering.

And fwiw, I have read the accounts dontsaythj very carefully indeed and have personal experience of one of my closest friends dying from cancer last year and of my own father and fil dying in very painful and difficult circumstances.

In my role as a carer I witnessed paramedics trying to resuscitate a lady in her mid 80s with severe heart failure. It was horribly undignified and she died anyway.
I realise that paramedics are required to try and resuscitate people and are not God

I would say that trying to resuscitate someone in those circumstances is the "playing god" behaviour. Same for dragging out the dying process.

@Slingingcontest

Unless everyone wants it, then no one should have it available?

If someone is of sound mind, then they should be permitted to decide their own end, rather than go on in suffering and indignity.

Read the accounts here of what the end looks like for many people.

@Runninghorse

Thanks for sharing that. I will be joining.