Now have seen Surgeon who doesnt know much about dementia. The growth in the rectum is large but contained. He has suggested a total resection of bowel that might end up with a temporary colostomy. The operation is at least 4 hours long and my husband will be in Hospital for between 7 - 10 days. He is a happy 77 year old man with advanced FTD. His cognition is extremely poor as well as his communication. There is a risk his dementia will worsen following the operation.The cancer hasnt spread as yet and his symptoms are manageable .The alternative is to wait and put a stent in should the rectum become blocked. Of course the cancer will inevitably spread but this may not be for a few years.I am not sure how he would cope with such a big operation .... the quality of his life is paramount and all I want is the best for him.I feel that we should have a multi disciplinary team meeting to discuss his "best interests" I would be grateful for comments as I feel so stressed about it all.
Oh Carol,
I am really concerned to read that the consultant may not be looking at the whole picture here. Did he mention your husband's quality of life or the consideration of a palliative approach?
I am sensing that you would rather go for the option to wait and see for now. Do the rest of the family agree? I personally think this would be an entirely reasonable option. If you do not feel confident to decide this on his behalf outright, then requesting a multidisciplinary team meeting to discuss his best interests would be optimal here. To decide either option would be quite a burden potentially for one person and definitely best collectively agreed upon. But this is the NHS and a meeting may not happen easily. If a meeting cannot be arranged, I would contact his dementia team and discuss it with them separately. Also his GP, if s/he knows your husband well.
As you say your husband is happy and physically well with his advanced dementia and his bowel symptoms are currently very manageable and have not spread. This to me is key information. They could be interpreted either as a reason to hold off, or, but to someone not considering the potential consequences to his mental state, this could be thought of as a reason to proceed now. A 4 hour anaesthetic is far from trivial. There has been much discussion about the possibility that anesthetic agents may have neurodegenerative complications in some people and there is more research to be done.
However, something brought about the investigation in the first place...what symptoms alerted you to a problem? Were they problematic for your husband, or just something observed when he opened his bowels? If the surgery went ahead and went well, might he be in a significantly better observable physical condition compared with now? Or is it not so much about symptom control but about trying to prevent the spread of his disease, which, if it occurs could be very difficult to manage and could involve leakage of bowel contents from more than one place. This is probably what the surgeon has in mind.
However, remember that the surgeon would have absolutely no part in his day to day care and recovery. It sounds as though the practical consequences may not be something he is fully considering. What is certain is that surgery of this kind would be a tremendous challenge even for a well person, with a long recovery time, particularly if there is a temporary colostomy (easily within hands' reach; colostomies and dementia are a dangerous combination).
How well would the care home staff cope, if a temporary colostomy ended up permanent? Is there a risk that they may feel that they cannot cope and may suggest moving him? How anyone with advanced dementia would cope with it all is impossible to say...if he does not recall his diagnosis then he may not have the adverse effects of anxiety about this new diagnosis, which would be to his advantage, but he would almost certainly be aware that something dramatic and unpleasant was occurring. Does he accept close-up personal care readily? If the answer is already no, then I cannot see how this surgery could ever be realistically considered.
Whatever happens, don't allow yourself to be rushed into any decisions and try to include as many people as possible in the final decision. If everything is still in balance, go with your heart.
With warmest wishes,
Daze