Living Wills

[ginandtonic]

Hi I am new to the Forum and would appreciate the advice/experience of anyone who can help with this.
My mother was diagnoised with Dementia with Lewy Body a few years ago. She has been living in a residential care home until recently but had a fall a few weeks ago and is now in hospital. She is unable to get out of bed without a hoist - and is hoisted into a chair and back again. She needs to be turned every two hours to prevent pressure sores. She is doubly incontinent, has to be hand fed and coaxed to even eat or drink a mouthful. She is having hallucinations and is terribly confused with an inability to understand instructions or make herself known. Yet she has been deemed "medically fit" by the hospital nursing assessment team!
We are now looking to move her into a nursing home.
My sister and I have Enduring Power of Attorney for my mother which we have activated. We also have two letters which my sister drafted and she signed (both countersigned by my sister and I) stating that she "did not wish to be resusciated or kept alive mechincally , if that was the joint decision of her daughters". These letters were not witnessed by an outsider or a GP. They were written and signed in the first year following mum's diagnosis when she was still living relatively independently at home and certainly knew what she was signing.
Does anyone have any experience of whether these letters will mean my sister and I will have the right to determine my mother's treatment in the event of resusication and being kept alive mechanically? Do we need to take any further action or can we just lodge these letters and a copy of the Enduring Power of Attorney with the nursing home?
I really appreciate the advice of anyone who has been in the same sad situation as we now find ourselves in....
many thanks

 

[Butter]

Welcome to TP ginandtonic. And I am sorry to learn about your mother.

The advice is always to get two LPAs in place: one for finance/assets and the other for health/welfare.

However, when she is admitted to the nursing home you should be asked a series of questions about your mother's care. And you should be asked about DNR (Do Not Resuscitate.) If you are not asked, you should volunteer your mother's and your wishes. These should be recorded by the home.

And they should be acted upon.

In my mother's case - there was no formal paperwork in place. The home interviewed me and my father and wrote down what we told them. We both signed the home's forms.

And everything continued accordingly - I was able to say that we did not want my mother taken into hospital (again) for re-hydration and anti-biotics. I found it was wise to say this loudly and clearly in front of the CH manager, the GP and the staff as homes are nervous of being accused of not trying to preserve life at all costs.

Palliative care was eventually set up for my mother - again I had to be loud and clear.

Please keep posting here - there are people on this site who know much more about this than I do.

 

[ginandtonic]

Thank you

... for your prompt response. That is very helpful. I will ensure that the issue of DNR is discussed as soon as Mum moves into the nursing home.

Sorry to hear that you've been down the same route - I think all we can do is to make the end stages of our loved one's lifes as painless, comfortable and dignified as possible....

 

[winda]

Welcome from me too ginandtonic,

I don't know whether your mum's letters are legal or not, but my experiences have been the same as Butters.

My husband had made a Living Will but it was written up by a solicitor. Once he was in the CH I don't think it was really necessary. We gave a copy to the GP and the CH also had a copy. When it became necessary to talk about palliative care I was still asked whether or not I wanted my husband to go into hospital or to remain in the CH to be kept comfortable.

I didn't have LPA for Health and Welfare but I was consulted at all stages, even when my husband went into hospital for assessment.

I think that if you can be seen to be actively caring and supporting your mother then you will be automatically asked about major decisions.

Good luck

 

[sue38]

Hi ginandtonic (great user name ) and welcome to Talking Point.

We were in a similar position with my dad. We had an EPA for him , but by the time the Health and Welfare LPA was introduced he was too far down the line to do it. He had not done a Living Will.

When he became seriously ill with pneumonia in 2010 he was admitted to hospital and we were asked about DNR. Nobody asked if anyone had an LPA for Health and Welfare, or whether there was a living will, and they accepted our DNR decision.

If your mum has lost mental capacity remember you need to register the EPA.

 

[Margaret W]

In my experince, the medical profession is admirable.

When my dad had terminal stomach cancer and was admitted to a hospice at the end of his life, we had no documentation in place at all. I made it known verbally to the consultant that we had no wish for his life to be prolonged unless it would be a decent life, and the decision would accord with his wishes. I made it clear that we did not wish him to be rescuticated in such circumstances, and also that we did not want him to suffer.

They nodded sympathetically and said they could not take any steps to hasten his death, which at the time I understood.

He died two weeks later, and I was relieved.

5 years later I started to get guilt feelings. Had my words meant he died without intervention when there might have been hope for him? Had I in fact hastened his death without due reason? I made an appointment to speak to the consultant who had organised his end of life treatment. It was an uplifting experience. They had recorded my wishes, but hadn't actually needed to consider them. The cancer was far more advanced than anyone had realised. He died in his sleep. Nobody had told us that. I imagine him dying in pain, alone, scared. Not the case.She showed me all the written records of my dad's last two weeks in the hospice, including one very poignant record made the day before he died: "Fred says he has had enough now, and wants to die". Wow! Didn't that hit me with a brick?

I asked if she would have respected my wishes not to resucitate or prolong life unnecessarly, and she said yes, she would. But reiterated that she could not have done anything to hasten his death.

So, if your mum has decent doctors looking after her, I would show them the signed paperwork, tell them that you agree with the sentiments, and trust the judgement of the doctors in charge of her. I cannot praise the medics I have dealt with enough. We really do have some excellent men and women in the profession.

I hope you will find that your letters will be regarded as important by the medical team looking after your mum, and seriously considered in the case of an emergency.

It is quite wonderful that you are considering your mum's wishes so seriously.

I hope it all works out for you.

Love

Margaret

 

[ginandtonic]

thank you so much....

.... to everyone who has kindly replied to my question - it is comforting to hear the thoughts and experiences of those who have been in a similar sad position to the one my sister and I now find ourselves in.

many thanks again
x