Feeding and permissions

[Cliff]

Would some kind TP member please tell me how to find the rules applicable to Wales about the use of feeding tubes etc in hospitals or anywhere else.

I know Dee wouldn't want them but I want to be sure of the rules as the time is getting very close.

Am sorry to reopen a subject that must have been aired many times before.


With many thanks,

 

[Skye]

Dear Cliff

I'm so sorry that things re getting to that stage. I take it Dee is still refusing drink.

I don't know what the rules are, but in my experience a naso-gastric tube can be inserted by the doctor, as this is not regarded as invasive, but they should ask the family before inseting a PEG, as they need permission for surgery.

I was asked this for my mother, and I declined. I was also asked by the NH when John was admitted. I said no again.

I know this does not always happen, and in Tender Face's case a PEG was inserted without consent, but this is against medical ethics.

I'd make sure the NH know your wishes, and have them written on her file. Also that should Dee have to be admetted to hospital as an emergency, the hospital is also informed of your wishes.

Love to you both,

 

[BeckyJan]

Cliff:
I have just read your post. I cannot help with a proper reply but just wanted to say that I was thinking about you. I am so sorry you even have to think about this.

Love to you both. Jan

 

[JPG1]

Can only speak from my own experience.

Cliff,

As I understand it, the surgeon/consultant/doctor has the final say in any medical procedure. Took me by surprise when I came by that too, but that's the way it was explained to me.

Yes, they are required to talk to and to listen to relatives, but my understanding ... which may be wrong, so hands up here, cos I'm not absolutely certain about this ... my understanding is that the doc is the ultimate arbiter.

Because only s/he has the appropriate medical knowledge to know/understand/appreciate whether this is a genuinely required procedure.

I haven't yet got to the bottom of where the patient's wishes come into all of this, nor where the relatives' wishes come into the thinking either, so am working on that one ... still. But I imagine it is all to do with the best-interests-of-the-patient theory. And I have no idea yet who is to decide the ultimate best-interests plan of action/philosophy! Haven't got to the bottom of that one either!

For what it's worth, have been there and am still where you are.

So all I can do is to offer you info based on my own experience thus far. Good luck and I hope it works out for you and for yours.

 

[Tina]

Dear Cliff,

I'm very sorry Dee's situation is such that you have to think about whether to let her have a feeding tube.

I must stress that I do not know what the official rules are or were, I can only tell you what the situation was in our case with my aunt (in Wales).
She had a massive brain haemorrhage after several more minor strokes and subsequent VD, was paralysed down the right side of her body, doubly incontinent and incapable of speech or swallowing. She was in hospital for four months before she died. She had a naso-gastric tube inserted after it was agreed that a normal drip was insufficient. When it became clear, after a real rollercoaster of emotions, that she would not die immediately after the haemorrhage but would require long-term feeding, the decision was put to my uncle and cousin whether or not to fit her with a PEG. They decided yes, give it a go.

Cliff, again, I do not know what the official or legal situation is, but I do know consent was asked of my uncle as next of kin before any kind of procedure was carried out.

Can I also say that while the PEG did not really improve her quality of life (i.e. she never recovered from the brain damage) and she died about 7 weeks after it had been fitted, the procedure itself was without complications and the feeding also did not cause her any complications. She did not die because of having a PEG fitted. But she didn't regain quality of life either. It simply meant she did not die sooner from the condition she had Such a hard decision, it broke my uncle's heart...

In my grandparents' cases (also in Wales), our consent was also asked as next of kin when they deteriorated significantly. The issue was not only food and drink, there were other medical problems as well which caused a sudden deterioration, and we did the same as Hazel has done for John and her mother...we declined any kind of artificial feeding, just opted for pain relief and making them comfortable in their final days. And we didn't have grandad moved to hospital either. He stayed in his nursing home, tenderly looked after by wonderful staff and those of us who managed to be there.

Thinking of you Cliff, and of Dee too.
Tina x

 

[Grannie G]

Dear Cliff

I don`t know the answer either, but I`m so sorry it`s come to this.
Love xx

 

[suzanne]

from very recent experience, my ma required an operation and it is a requirment by law that 2 surgeons/drs have to sign the consent form for any person that has mental impairment, we were given 24 hours to think it through and they discussed the pro's and cons with all members of the family, but they ultimately have the last word.

 

[Tender Face]

Dear Cliff

If it helps ...... http://www.alzheimers.org.uk/talkingpoint/discuss/showthread.php?t=11284

I believe the GMC guidelines (link on the thread) apply to Wales as well as England ..... and the Mental Capacity Act Chapter 9 certainly does ........

I'd print copies off .... highlight everything relevant to yours and Dee's situation and record/receipt the fact that you have 'deposited' the documents with any annotations you see relevant to Dee with whoever is in charge of Dee's care and dare let them do anything which would go against what you know to be Dee's wishes ......

Mum's hospital consultant declared (indirectly) he had acted in my mother's best medical interests ... interesting then when mum was moved to a hospice the medics there made a huge point about 'best interests' including emotional welfare (including faith etc) and never used the PEG for artificial feeding, (indeed it was very quickly removed again due first to infection and then blockage so she had gone through the whole trauma for nothing ......) ..... preferring instead to focus on providing 'quality' not 'quantity' of life ....

Sorry for the ramble, subject too close to my heart ....

Much love, Karen, x

 

[lesmisralbles]

Hello Cliff

I do not know the situation in Wales.

I only can relate to you about my Mum in Law.
She could not eat or drink for the last weeks' of her life.
She could have been moved to a hospital. Ron deceided to let her stay at the nursing home (her home for 5 year's).
To leave this world in peace, in her bed. She did.
Went to sleep, and in no pain and in peace.

With much love

Barb & Ron XX

 

[Sandy]

Hi Cliff,

I'm sorry that things are appearing to go in this direction for you and Dee. It's very good of you to be as prepared as possible to contemplate conversations that might need to happen along these lines.

You might want to look at the Alzheimer's Society's page on palliative care that mentions artificial hydration and nutrition:

http://www.alzheimers.org.uk/site/scripts/documents_info.php?categoryID=200167&documentID=428

The really important thing is, if someone with dementia has lost their swallowing reflex, then it indicates how badly their brain has been damaged by the disease and the body's natural course of shutdown has begun.

This is different from someone who might need a PEG due to a different medical condition, where they might have some chance to regain abilities with time.

Take care,

Sandy

 

[foxhound]

I think the other replies cover pretty well everything. Apart from adding my own hug down the ether, I would add this:

Most doctors, will, I suspect, act very humanely in this sort of situation. If you feel they are not, and that they have not made a convincing case for the approach they are taking, do not hesitate to DEMAND second, third and fourth opinions - the local palliative care team would be a good first one to have.

 

[gigi]

Hello Cliff,

I can't give you any information..

But wanted to say that I'm sorry you're having to think about and prepare for this...

Sending you love..gigi xx

 

[Cliff]

Thank you all so much for your loving, kind and helpful posts.

Am posting tonight to say that I now have the full support of my GP who is totally against nasal or PEG feeding in the case of AD patients when they refuse to eat as a regular pattern of behaviour

Her attitude is that pain-relief and comfort are paramount in this situation.

She will examine Dee in the present NH next week and discuss future care, with me present, which will not be hopitalisation unless she finds an acute problem which needs it.

Everything is happening so fast it is overwhelming but feel I understand much more now thanks to all this help.

Love to you all,

 

[ginger]

Dear Cliff
I am so sorry you have to think about artificial feeding and nasal tubes - it is always a difficult time. I can only relate to my late mother who when she got to this stage, as her next of kin I reiterated the fact to her doctor that palliative care was uppermost keeping her comfortable and free from pain - this they agreed. I also asked that she remained in the NH rather than be moved to hospital - they also allowed this to happen. The staff at her NH kept her very comfotable giving her sips of drinks etc. Cliff ensure that your wife's doctor and the staff at the NH or hospital are aware of your wishes by putting it in writing, they should involve you in any decisions about your wifes welfare - quality of life is more important than quantity at this stage.

Take Care

 

[Margarita]

Her attitude is that pain-relief and comfort are paramount in this situation.

She will examine Dee in the present NH next week and discuss future care, with me present, which will not be hopitalisation unless she finds an acute problem which needs it.

Please to read that , Sorry to read that its all happening so fast . Just wanted to send you both my Love xx

 

[ROSEANN]

Dear Cliff
I am so sorry you find your self in this position now but also glad that you seem to have a caring GP who is on your side.
Sending you much love for what you have to face in the future.
Love Roseann

 

[gigi]

Hello Cliff,

Her attitude is that pain-relief and comfort are paramount in this situation.

I too am sorry that this is happening...hope that Dee will be kept comfortable and peaceful....

My heart is going out to you....thinking of you both...

Love gigi xx

 

[ginger]

Dear Cliff
Our postings must have overlapped - I am so pleased your GP is so supportive - this must give you some comfort at this difficult time.
Take care

 

[Skye]

Dear Cliff

Just sending much love and hugs to you and Dee.

 

[barbara h]

Dear Cliff

Sorry that you have this dilemma to face. My mam didn't eat or drink much in her final few weeks (she died two weeks ago) and we decided on her end of life agreement that we did not want any intravenious feeding as we thought it would be prolonging her life when she had no quality of life anyway. Easy putting it down on paper but very difficult in reality but we knew it was the right thing to do. In the end she died in the care home in her room very peacefully.

Good luck with everything

love
barbara h