Removal of Stone in Biliary Duct - Elderly Dementia Patient

[nita]

Can anyone tell me if their relative has had the above? The medical name for it is Endoscopic retrograde cholangio-pancreatography (ERCP).

My mother was recently admitted to hospital with an infection in her biliary duct which turned out to be caused by a stone. A gastro-enterologist told me that this procedure was advised for someone with this condition but, looking at my mother, didn't think she was fit enough to have it done. She is 91 years old and has had Alzheimer's for five years and has been bedbound for two of them. Despite apparently being in the late stages of Alzheimer's, my mother can still communicate - she can tell me what is wrong and even have sensible conversations with me. She sleeps a lot but still enjoys food. I feel she has some quality of life.

I originally agreed with him that it was best not to have the procedure. He said she would be a high-risk patient but looking it up I find that it has been performed on the elderly successfully, presumably the comparatively fit. It involves placing an endoscope down the oesophagus. The person is sedated. When she was in her 80s, before the start of dementia, my mother had a gastroscopy and didn't know anything about it due to the sedation.

The doctor has given my mother the oral dissolution tablets without much hope that they will work. It seems recurrence of the infection is likely and I got the feeling they didn't think she should be hospitalised again if this situation recurs. This time my mother was admitted with a fever and shortness of breath and the discharge sheet says "sepsis". She was on oxygen for one day, IV antibiotics and fluids. They didn't think she would last the weekend but she started to pick up quickly and I got her to eat from the first afternoon after going in. Of course, the infection must have been stopped quickly before it travelled to other organs but I think she has a strong constitution.

For this reason, I wonder if I have done the right thing. Should she have no medical interventions apart from antibiotics? Is the doctor unwilling to take the risk as he is afraid it would reflect badly on his statistics were the procedure to fail? Has anyone else made the decision to have this type of intervention?

 

[Kevinl]

Sorry Nita but you'll never know, the operation might make her worst but then again it might make her better. My feeling is that if it's not causing her any problems leave it be. You say that "I feel she has some quality of life" I'd just enjoy that, like the DNR topic on here intervention isn't always the best thing, As with any operation do the benefits outweigh the risks? It sounds to me like a big risk all operations and sedation.
She's been called "high risk" and the doctors say "didn't think she was fit enough to have it done" unless this was causing her some major discomfort or pain I'd say no.
What a hard choice to have to make.
K

 

[Amy in the US]

Nita, I'm sorry to hear about your mother. I've not been in anything remotely resembling your situation but couldn't just read and run.

Of course I cannot know, but I am going to guess that the doctor genuinely feels your mother is considered high-risk for the procedure and/or that the benefits would not outweigh the risks.

Since you clearly are uncertain about your mother not having this procedure, and are keen to ensure the best quality of pain-free life for her as possible, for as long as possible (and good for you for being her advocate), then I would suggest any or all of the following:

-get more information
-have another conversation with the doctor you already saw
-seek another medical opinion
-if she has a GP who knows her well and whom you trust, talk to them also

We can't tell you what the right thing to do is. You have to make the best decision you can, based on the information you have, your mother's condition at the time, and with whatever knowledge you have of what she would and would not want done. You know her best. Listen to your gut feeling as well as to your head.

 

[nita]

Thank you for replying, Kevin and Amy.

I actually saw my doctor yesterday regarding my own problems (just been diagnosed with high blood pressure!) and he said he will talk to me about it next week when he sees me again. He knows my mother and his first thought was that she would be high risk.

As you say, I need to weigh up the risks and benefits. The stone hasn't given her any pain so far, so maybe it's just a case of wait and see. I don't know what the probability is of it becoming infected again and that is the worrying part - if she gets sepsis again does she get rushed into hospital or do I let nature take its course? The consultant has advised the GP to give amoxicillin if appropriate but that won't be enough if she gets that ill again - she will need oxygen, IV fluids and antibiotics. That is my dilemma.

 

[Sue J]

Thank you for replying, Kevin and Amy.

I actually saw my doctor yesterday regarding my own problems (just been diagnosed with high blood pressure!) and he said he will talk to me about it next week when he sees me again. He knows my mother and his first thought was that she would be high risk.

As you say, I need to weigh up the risks and benefits. The stone hasn't given her any pain so far, so maybe it's just a case of wait and see. I don't know what the probability is of it becoming infected again and that is the worrying part - if she gets sepsis again does she get rushed into hospital or do I let nature take its course? The consultant has advised the GP to give amoxicillin if appropriate but that won't be enough if she gets that ill again - she will need oxygen, IV fluids and antibiotics. That is my dilemma.

Hi Nita

Agreeing with what the others have said and whilst you have a 'dilemma' I agree, it is not yours alone. The medics have the dilemma too and ultimately it will rest with them as a surgeon has to assure himself that it is the right thing for your Mum, don't even think about statistics!

Try not to fear the 'what ifs' but take each day as it comes, the oral dissolution tablets may work, lets just hope that they will.

Love
Sue

 

[nita]

Thank you, Sue. I understand there are all sorts of risks, not least that of bleeding as my Mum has been on blood thinning tablets and would need to stop those beforehand. When my Mum had a cystoscopy 4 years ago, I vowed I would never put her through anything like that again but if it were painless and it gave her a bit more time I am pondering whether it would be worth it.

As Mum isn't in pain, it is an easier decision to not have the procedure.

Has anyone on TP had such an intervention themselves or know someone who has?

 

[Louby65]

Hi nita . This procedure is carried out with a degree of risk in medically fit people . It will be a huge risk for your mum. Believe me , the consultant is making the right decision . I have a lot of experience with this type of procedure . If it was my own mum I wouldn't put her through it at her age and with her medical history and worsening dementia . I hope your mum responds to the oral medication . Best wishes . Lou

 

[Spiro]

You could consider asking the GP to refer your Mum to another hospital for second opinion; the chances are the second consultant will say the same as the first one.

If this would put your mind at rest, then it might be worth considering.