A Living Will

[Orangeblossom78]

Does anyone have or know about these?

I have a horrible illness which flares up and becomes life threatening. I've had lots of surgery for it and now they say they will struggle to do any more and if it gets that bad again it will be very difficult. The treatment is really unpleasant also, even except for the surgery. I also have a genetic risk of a neurogenerative condition as well.

I'm in my 40s but don't think i can face all that after say late 70s/early 80s and feel it will mean lots of care costs as well. So what I am thinking is I may choose to stop treatment at that stage and if it does flare up choose symptom management / palliative care. At present have a plan which is about no treatment unless life threatening as the treatment can make it worse. Very difficult situation.

Having this idea of some control over the situation is very helpful to me. My Dc will be grown up by then and I don't want them to have to care for me and to be able to let them have a home for the future as well.

Sorry you have to go through this OP. We could move this to the 'Legal Matters' section for you if you would like to maximise responses?

I thunk it is OK here as might help others with health problems? But as you think MN

I copied the post to "health' and got more responses there, thanks though

My mum an step father both had living wills. They were not a legal document but it laid out their wishes very clearly. You could also complete a Health POA and state your wishes very clearly.

I found the hospital and the care home very respectful in this regard. I asked them not to move my Step-father to the ICU and he had a peaceful death a week later..

it's called an Advance Directive in England, and if you go to the Compassion in Dying website there's all the info and the template. You just need it witnessed - you can pay the doctor to declare you of sound mind but it isn't essential.

then leave a copy with your GP, make sure your relatives know about it and carry the card.

our evil law that bans assisted dying makes these an absolute essential for anyone who wants to reduce the chance of later suffering. There were good signs that the law might change but it has of course all been lost with the dissolution of parliament.

may you never need this - but may it be respected if you do.

As PP said, get an Advanced Health Directive and fill it in. It covers all the possibilities which may arise , and you can say what you do / don't want done in all circumstances. To my knowledge, AHDs are taken very seriously by treating doctors so don't worry that your wishes would be overridden. Everyone should do one !

I know it’s a difficult topic but I think there needs to be more awareness about these- most people aren’t aware of them and yet pretty much everyone I’ve ever discussed it with says they wouldnt want to be kept alive if they had dementia or were paralysed from the neck down.

Yes i think it's really important. I have elderly relatives and in recent years have seen them put in a difficult position of being asked to decide what a sibling would wish in terms of treatment and it was really hard, so it has made me think about this more. Imagine one of the DCs being asked in years to come for example.

Yes, I imagine it's torture for the relatives, and worse if the relatives disagree. I went to a medical ethics conference (basically to help lay people understand complex cases) and there was a case study where a man was in a minimally responsive state, his wife wanted to withdraw life support but his parents disagreed because they thought he was signalling to them (doctors said this was involuntary muscle tremors).

Yes it was difficult, the choice was whether to operate when a person was very poorly in other ways...one said yes others said no...so there was no consensus, I am unsure why they did not ask the person themselves maybe they were too sick. But I saw the affects on the relatives at such a time and how it even caused problems in their relationship after...(one was saying it was wrong etc and he had been 'let go') what a nightmare

So yes that all could have been avoided if anyone had been brave enough to discuss it before it came to a crisis point.

I mean things are Ok for now but more for the future really.

So the same situation as Soulrunner describes.

In my relatives case it was the wife said not to operate and he died a few days later. However other relatives such as siblings thought otherwise and he should have the op. The op would only extend suffering / life for a short while. This situation meant complex feelings guilt and resentment arose between relatives and family all accompanied by the grieving as well. And the man himself never had a say in what he wanted / thought either.

I've had an Advance Directive (now apparently an Advance Decision) since watching my mum die, days later than she wanted to. I wish we could have done more for her but until we afford humans the kind painless exit that we give to our beloved pets that isn't an option.

If you go here it'll walk you through various scenarios and ask what you'd want to do in each. You can decide, for example, that you'd want life-sustaining treatment if you couldn't communicate because of dementia or brain injury but were aware of your surroundings and were not persistently agitated and anxious. Note that life-sustaining does not include pain relief and other measures to make you comfortable, mentally and physically; these are specifically ruled out of the refusal. Once you've gone through all the sections it'll create a PDF for you to print out and sign (in front of witnesses, because it is a legal document).

If you make an Advance Decision you need to be sure that the people who, along with your medical team, will make decisions about your treatment are aware of your wishes. It's really important that your AD is available and that people know where it is. If you collapse at home and an ambulance is called, the paramedics need to see your AD or they will be obliged to start trying to resuscitate you.

Thanks Librarymiss, that looks helpful. I'm glad it helps you too.

We can't control the things which happen to us, but we can control how we respond.

I have also got a plan in place atm with GPs which is for self management at home as much as possible and only hospital / surgery if life saving, and feel that is Ok for now, but will think about doing one of these in years to come.