Consultant refusing to carry out surgery

[leslee]

Mam has alzheimer's and we are in the process of filling in the forms to get deputyship over her health and welfare. This has been a lengthy business because of the complexity of the forms and both my son and my Mam becoming ill.

Mam has a rectal prolapse and needs major surgery. Her consultant is unwilling to carry this out as he does not believe that she can give consent. In the mean time they are planning to send her home and have a nurse come in every morning to put everything back into place. It will come out again through the day and, although the consultant says that this will not be painful, I think it will be.

We are now rushing through the forms as the Court of Protection says that they could be put through as an emergency, although I'm not holding my breath. This is something that I would not have thought to put on the application anyway. I also have a telephone consultation with her GP tomorrow to see if she can help. Does anyone have any other advice?

 

[Grannie G]

I believe this is major surgery and do know a general anaesthetic may have a marked effect on your mother`s Alzheimers. However a rectal prolapse is also unmanageable without surgery so there is indeed a dilemma.
I do hope you manage to get something sorted out.

 

[leslee]

I didn't realise that the anaesthetic could have a detrimental effect on her Alzheimer's. It's Mam's quality of life that I'm concerned about. She loves walking. She takes the same route every day, the one that her and Dad used to take, and enjoys chatting to the people that she meets. I think that her condition would worsen anyway without these walks.

 

[Grannie G]

It sounds as if the consultant is very concerned about the effect of anaesthetic on Alzheimers. It would have helped if he had discussed this with you.
This is a link which might help you.

http://www.alzheimers.org.uk/site/scripts/press_article.php?pressReleaseID=72

 

[leslee]

Thanks for that.

The consultant did not mention this at all. He led me to believe that the issue was that Mam could not understand enough about the surgery to give her consent. Of course she would not be able to understand the potential effects of anaesthetic as she thinks that she had Alzheimer's but has been cured.

Now it really is a dilemma

 

[MJK]

Hi,

Sounds like your consultant is being particularly awkward - there must be lots of situations where the patient is unable to give consent and the hospital proceed without it, or get consent from next of kin. Surely you Mum is also unable to "consent" to the nurse helping her too!!

My Mum has severe Alzheimers and is unable to give consent to anything, does that mean she should be left untreated? It's daft!! As it happens she broke her hip recently and had to be operated on. She was unable to consent but the doctor discussed it with her sister (who was there at the time), and she gave permission. Though no actual consent form was actually filled in.

Sometimes it just seems like common sense has gone out of the window. I hope you get everything sorted soon. You have my sympathy - sometimes stressful situations are just made so much worse (needlessly).

 

[miss molly]

Dont let the consultant fob you of you can act as the patients advocet until the legal side is done. The consultant has a duty of care to your mum and so does the hospital.Dont worry about the anasthetic too much, ask if a spinal anasthetic is suitable with some sedation, this is used alot these days. She needs the op as a prolapse is so uncomfortable. Good luck.

 

[leslee]

Thanks everyone. I've spoken to the Alzheimer's society now and I am waiting for Mam's mental health nurse to phone me back. When I go to the hospital after work I'll ask to have a chat with her consultant again. I'm going to have to broach the possibility of her Alzheimer's getting worse with Mam though. I'm not looking forward to that as she believes that it's been cured

Mam really wants this surgery but she doesn't understand the harm that it could do.

 

[Sandy]

Hi leslee,

As far as I understand this, if your mother lacks capacity to make this decision, then a best interests meeting can be held to help determine if this treatment is in her best interests.

Also, I'm not sure if the consultant's opinion that she lacks capacity is the final word on this topic. I assume you mean a consultant surgeon, who may not really have the specialist training to do an assessment of mental capacity.

Do you have a social worker or Community Psychiatric Nurse (CPN) that you can contact? Or even the GP could help with this.

What I would think needs to happen is:

1) A formal assessment of your mother's capacity to consent to this procedure.

2) If your mother is found to lack capacity, a best interesting meeting (involving a team of people, including you as her family) review the options and decide which is in her best interests.

You can read a bit more about the process of assessing mental capacity here:

http://www.newport.gov.uk/stellent/groups/public/documents/policies_and_procedures/cont230738.pdf

and this describes the best interests process:

http://www.pmldnetwork.org/resources/bps_best_interests_guide.pdf

Take care,

 

[leslee]

Thanks
I have been in touch with Mam's social worker and apparently the district nurses are unwilling to cooperate with the consultant surgeon's plan and so Mam is now stuck in hospital. The social worker is of the opinion that Mam is capable of consenting to this surgery. There is a meeting arranged for next Thursday with the surgeon, social worker, district nurse, psychiatric nurse and myself to see if we can come to an arrangement.

Fingers crossed.

 

[Sandy]

Hi Leslee,

That sounds much more positive - almost like a best interests type of meeting.

I hope the outcome is positive for you and your mum.

Take care,

Sandy

 

[leslee]

Just a quick update on this. The meeting planned for Thursday has now been rescheduled for Monday, although Mam's social worker is off work that day and it will be attended by a different one. There is another meeting tabled for Wednesday with Mam's psychiatric consultant and social worker etc which I am also attending. This is to try and sort out the issue of consent for this surgery (if that is still necessary) So hopefully things will be sorted out next week.

Mam seems to be deteriorating through being stuck in hospital. She can't even remember what is wrong with her when people ask. She is asking us to get a solicitor to come and see her so that she can give us power of attorney and we can consent to the surgery for her.

It's very odd how sufferers of Alzheimer's become accustomed to their condition and believe that it is normal to forget everything. Mam still tells people that she had AD but now it has been cured and she's better. We tell her that she's better than she was but she still has it.

 

[Nebiroth]

It is very common for people with dementia to become much more confused when they enter hospital. Not only does any physical illness or injury amplify the dementia, there is also the change of place, of routine and of people.

Many if not most people with dementia have no insight into their illness.

It also tends to be, not a case of accepting forgetting everything as normal, but more simply not recognising that they forget at all.

Most of us will recognise that we have forgotten a specific fact or word. In dementia whole memories vanish completely without trace. Usually only at the very beginning will someone realise that they are forgetting things because the incidents are isolated and specific. The losses soon become more generalised yet the person will not realise they have forgotten.

 

[leslee]

Thanks Nebiroth.

I didn't word that very well. I meant that this time last year Mam would still have been arguing with the surgeon about being stuck in hospital. Now it doesn't occur to her that it is odd that she doesn't know what is wrong with her.

 

[vdg]

My Mum had a rectal prolapse done this year.They did it under an epidural as she has COPD so can't have a general anaesthetic. I don't have LPA for her health and welfare but they consulted me on all of it and I stayed with her while they put the epidural in.It has made a big difference to her quality of life since she had it done, the prolapse was painful and undignified and she has been happier since it was sorted.

She did struggle a bit while in hospital for a few days but because she has AZ I was allowed to visit any time at all.Their thinking was that as she is child like the rules for children and visitors/helpers etc should apply.

I was recently made aware of the "This is Me" booklet from the AZ society which helps the medics in caring for someone with dementia as it tells them what the patient can't tell them. It would have been useful, I have now saved the pdf to my pc for future visits.

 

[leslee]

Thank you so much vdg. It is useful to know that this type of surgery has been carried out on people suffering with AD before the meeting tomorrow. Your hospital sounds so much more accomodating than ours, especially for the visiting. Mam's been in there for nearly 2 weeks now. I only found out most of the info that I have through the social worker. The hospital has told me very little and, of course, what they tell Mam she forgets. She is also quite lonely in hospital as she is on a ward with 5 other people and neither they nor the staff seem to know how to cope with her dementia. The staff told her to stay in bed as much as possible to see if her prolapse would stay in place but of course she forgets. Visiting times are awkward as both me and my brother work full time.

 

[Lynne]

Hi Leslee, in 2006 my Mum fell & broke her arm.
She was then in the early/middle stages of Alzheimer's, 87 yrs old, short-term memory going fast but still had most of her marbles in terms of understanding & intelligence.
She knew what AD is and would become (ex nurse herself, knew FAR too much about it!) and we could talk about it.

Months after the fall and the arm showed no sign of healing, after just hangng around in a sling (quelle surprise) and was giving her pain, as well as (I thought) accelerating her decline due to the physical limitations. We (both) persuaded the consultant into operating to pin the bone, which meant general anaesthetic. Naturally there was a lot of discussion about what effect the GA might have, but she was still lucid enough to make her wishes - and her understanding of the risk - known clearly.

To cut to the chase, she had the op., had a couple of wobbly days of confusion (op day & next day in hospital) but recovered as soon as I got her home. It stopped the constant pain she was suffering, and I don't think it worsened her AD. We were lucky.

It seems no one can say anything 'for certain' relating to dementia, but doctors/hospitals these days always seem to stress the worst-case scenario (for fear of getting sued?) so one can't say they didn't warn you.

Of course, if the GA had scrambled Mum's poor brain even more, I might be telling a quite different story!
But your Mum's affliction doesn't sound as if it's going to resolve itself without surgery to me, and maybe a general anesthetic isn't necessary - certainly worth asking.

Best wishes

 

[foxhound]

May be worth adding some thoughts from experience here. My mother has had rectal prolapses for some 3 years now. They are (usually) not that difficult to put back in, and as a rule seem not be painful at all. The putting back in is a bit grim, but one just grits ones teeth and says "this is going to be a bit vetinerary!"

A surgeon did see her, but my moher's view was very strongly "no op". My (layman's) understanding is that the op is not as minor as one would imagine, and one should also take into the risk (not small at all) of the anasthetic increasing confusion - sometimes dramatically.

It's not the most straightforward decision in the world, but I can quite see that sitting in hospital waiting is not doing yr mother any good at all.

Good luck.

 

[leslee]

We had the meeting today and the surgeon has changed his tune. He now says that Mam's muscle tone down there is so weak and also the fact that she has had other surgery in that area means that any surgery that he can do would be ineffective. He said that he didn't realise this last week because he hadn't had a chance to look at Mam's notes. I think that he doesn't like being challenged. The meeting was at 12. He arrived at that time precisely and said that he could only spare 5 minutes!

Anyway, she is to be discharged this week with an alarm and instructions that if she feels anything away that shouldn't she is to use it or phone myself, my brother or the district nurse (if she remembers). She is also to have carers coming in for 6 weeks to check up on her.

We'll just have to see how she manages with this.