End of life care - what should I be thinking about?

[LizzieT]

I would be most grateful for some advice.

My father has settled well in his new NH and has been there for 8 weeks now. He is 80, still mobile, continent and sometimes comprehensible.

He has a bad back and the doctor has just upped his paracetamol to codeine and paracetamol, as he is complaining of feeling odd and with all other vital signs ok, the conclusion is that his back is the problem. This extra medication is fine with me.

However I have been asked about what sort of interventions I want for him, and whether more investigation is needed - in view of his history - he survived bowel and liver cancer 15 years ago.

I have previously decided that I don't want him rescusitated, and have told the home so, but what else should I be thinking about?

I need him to be as pain free as necessary and antibiotics administered for infections, but can see no purpose in operations/chemo or anything major which would cause him distress.

Impossible to know, but what else should I be thinking of so that I can communicate my wishes both to the invisible brother and the home so that I am prepared for most eventualities?

I haven't a Welfare POA and we didn't really talk about this when he was ok, but we have a really good relationship, so I hope I can do as he would have wished.

Many thanks, Lizzie

 

[Butter]

You may find it is easier than you think. If you are able to talk about it with your father, and involve your brother even remotely, you will establish whether or not he would want to be admitted to hospital.

Residents are sometimes admitted to hospital - usually because they have accidents or for intravenous treatment (usually for rehydration or intravenous anti-biotics).

We all decided my mother would not want to be endlessly re-admitted to hospital. So after the first admission (which I much regret but my father wasn't sure) - she remained in the home.

Then I just had to make sure she was comfortable and out of pain for the rest of her life. She was in the home for nearly two years. Some people are there for much longer.

Your father is so fortunate to have you there looking out for him. I was glad I managed to establish a good rapport with my mother's GP and the CH manager and the staff. I think that helps in the resident's care.

 

[nitram]

Think about an advanced care plan.

A simple one would say that he is to be kept comfortable, pain and symptom free. This is the essence of palliative care, relieve pain, concentrate on the symptoms - agitation,nausea,breathing difficulty - rather than treat the disease itself.

Additionally it would say only to be hospitalised in the case of a bleed or fracture or any reversible clinical condition not treatable in the home/care home. I would not consider continual hospital IV rehydration due to impaired renal function a reversible condition.

You then have to decide when to implement the plan with his GP, but at least it is ready. The NH should be able to help you draft a plan.

If the back pain progresses you may wish him to have a scan and then discuss with the clinicians the viability of any treatment.

 

[LizzieT]

Thank you both and just what I needed. I will talk with the home tomorrow.

Lizzie x

 

[Saffie]

Lizzie, I was asked to write an end of life plan when my husband entered a nursing home over 2 years ago. i was told to write it as if it was my husband doing it and to put what I felt he would want if he was still able to express his wishes. The DNR was already in place and I opted for him to remain in the home as it would not be kind nor helpful for him to be taken to hospital as he has so many physical health issues aside from his dementia.

I would not consider continual hospital IV rehydration due to impaired renal function a reversible condition.

I don't think this is correct. Maybe if temporary but my husband has stage 4 renal disease and his impairment is non-reversible.

 

[grobertson62]

Hi
We had to do a care plan which got updated as time went on
Discussed when he would be admitted to hospital. For us it was if he broke anything or difficulty breathing. He had many falls with cuts bruises but no breaks. The home had an emergency care team who would come out and treat them in the home
We also had DNR

It's easier than you think. And you can change your mind
Gill

 

[nitram]

"I would not consider continual hospital IV rehydration due to impaired renal function a reversible condition.
I don't think this is correct. Maybe if temporary but my husband has stage 4 renal disease and his impairment is non-reversible."

We may be at cross what I'm trying to say is that I would consider continual IV rehydration in hospital futile if the underlying problem was renal failure and consequent inability to maintain a correct fluid balance.

 

[Saffie]

Thanks for the clarification Nitram. I agree but I just wondered if you had inadvertantly missed out the 'non' before 'reversible' which would have made your meaning clear.

 

[Butter]

Saffie, many things are artificially reversible - but they can only be maintained artificially. That is how people are kept alive by artificial means for decades.

 

[Saffie]

I know Butter but I think you are misunderstanding me now. There is no way I would advise anyone to go into hospital for he reason stated. It was just that I had read Nitram's post as saying that renal impairment was reversible - which it isn't as far as I am aware -and just thought she had meant non-reversible but had missed out the 'non' accidentally.
I wouldn't have wanted other readers to have false hope. Dave's kidney disease is the reason he would not survive another anaesthetic as his kidneys cannot clear the morphine from his body. He had to be resuscitated after his amputation.

 

[Butter]

Nitram knows a great deal more than I do. A great deal more! We are very fortunate to have his input.

 

[Saffie]

Butter, I think you are the only person who has mentioned anything being artificially reversible. I certainly haven't said that and can't see that Nitram has either. In fact, it was to avoid that conclusion on anyone's part that I mentioned that comment in Nitram's post in the first place!
None of which is of any assistance or support to the OP, Lizzie, so I'll shut up.

 

[catbells]

Hello LizzieT.
My experience of end of life care is working with the care home lead carer. We already have a DNR form ready (My has cardio vascular mixed dementia now in latter stages) She has had triple by-pass surgery and AAA enough trauma to the body and mind for one person, history of renal failure alsom,so the doctor had no hestation in signing the form. The care home took me through the journey of "end of life care". Calm and comfortable without hospital if possible. They asked me if I wanted to be present with doctor to confirm death/undertakers. Yes. what did I want her to wear. Never thought about it. The Care home prepare the body before going to the undertakers. I didn`t know what dress to pick so I gave permission for the carers to decide what they wanted her to wear. This is a small dementia unit of 22 residents, with 4 carers on each shift, two pvernight, so they know their residents very well and their families. The home also has a copy of the funeral arrangements etc. If was of course difficult, but they had given me time to consider, so now all plans are set, what we don`t know yet is how her life will end. I visit Mum every day so they and the doctor are very well aware that I am pro-active in the care of my Mum. I am hoping for no trauma, a gentle end to her life, but who knows.

It has taken me a good 3years to change my "mindset" to what I have had to deal with, plus giving Mum love and support too. Part of the difficulty is that with dementia suffers, it is usually too late to discuss how they wish their care plan and end of life is to be, so it is a tremendous responsibility to make decisions on behalf of our loved ones.

Hope this helps
Catbellsx

 

[zeeeb]

I'd speak to the invisible brother, and tell him that the nursing home have asked you to think about it. And ask if he has any opinions regarding being treated and taken to hospital, resuscitation etc. You'll probably find that he'll agree to not take any extra ordinary life saving measures, and if he doesn't, then, he'll need to go and speak to the management of the care home and put into place the plans to do extra ordinary life saving measures.

He'll probably run a mile when expected to actually do something if he's like most invisibles. And that'll leave you free to make the decision that you think is right, sensible and agreeable to what you think your father would want.