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Living Will

(4 Posts)
Orangeblossom78 Tue 26-Nov-19 09:34:31

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.

DaffodilQuery Tue 26-Nov-19 09:53:56

What a terrible position for you to be in. A friend of mine is sadly going through similar, and used this website to devise a Living Will for herself

compassionindying.org.uk/library/advance-decision-pack/

She worked with her GP, consultants and the pain management team to ensure that all of her wishes were ones the local NHS would consider, and chatted with a solicitor on her own, too. Everyone she approached was kind and supportive, and understood her wish to prevent her own suffering.

However, the actual power of her Living Will itself has yet to be tested - as in, the decisions in question have not yet arisen.

Sending all my love

Orangeblossom78 Tue 26-Nov-19 10:06:05

Thank you Daffodil, it actually feels strangely empowering

AnnaMagnani Tue 26-Nov-19 10:50:55

They aren't called Living Wills any more but Advance Decisions to Refuse Treatment.

It would only come in to play if you lacked capacity to give your own opinion about treatment.

Common things people want to refuse are CPR, ventilation, parenteral feeding.

There may be things you would want now but not want in a few years so now may not be the time to do it - you can always do it later. Or you may feel that if you were so unwell that you lacked capacity then time was up so now is the time.

You can always make one and add bits to it later on.

The key thing is to make sure people know you have one, as there is no point having it if it is tucked away in a drawer, and to be aware it is legally binding.

If you write the words 'even if my life is at risk' then you cannot be given those treatments if you are unwell and lack capacity from the moment it is written - you can't write it to say 'in a few years'.

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