Decisions around surgical procedures

[Muttimuggle]

My mother had a CT scan in April this year because the GP found that her bloods showed a further decrease in iron levels. The first option was a gastroscopy and colonoscopy but, in discussing this with the GP we talked about how, if anything cancerous were found, what would be an appropriate thing to do anyway. My mother is 90 and has many different ailments such as a leaky heart valve, CKD, irregular heart beat, skin which is prone to precancerous lesions and high but controlled blood pressure. She is also on large mix of different medications including a blood thinner. She does, however, still live alone and now has care in twice a day. Mum despite still often manages a daily walk with a rollator.

Anyway, in April the nurse who spoke to me on the phone was sympathetic about my concerns about my mother's potential ability to undergo, in particular, a colonoscopy and her ability to recover from any potential surgery, should cancer be found. My mother was put on iron tablets and her blood count is back to normal and I think she seems a little more contented and happy at the moment.

So, I wasn't expecting the gastroscopy nurse to phone today to tell me that the results of the April scan were nothing alarming in particular but that a thickening was found on the stomach wall. The normal procedure now is a gastroscopy to investigate. The fact that her iron levels are normal is "to be expected" on the iron tablets. She has to decide(she doesn't know yet) whether or not to go ahead with this. I have to go to discuss this with her Monday before phoning the nurse again with a decision. It is a difficult thing to spell out to her but she can be easily swayed in any direction((at least on a temporary basis) as her understanding of things can get confused....so she will sometimes just opt for agreeing - which I don't necessarily want. In short, I hate being largely responsible for these big decisions. She may have difficulty seeing the bigger picture and I am tending to err on the side of leave all alone since she is eating well and seems a bit better than normal(apart from the dementia).

Even bringing the thing up may set her into worrying about it and making up the story in her own head that she probably has cancer(...and that we are "leaving her to die").
I don't know what to do, what to think or how to really talk to her about it. The NHS is legally obliged to let the patient have the next line of procedure regardless of the age. I don't have POA (yet) but I would still be discussing with her anyway and trying to go along with her wishes.
Maybe someone has a similar experience on here. I'd appreciate hearing how you proceeded.

 

[Jessbow]

Presumably Iron is absorbed thru the stomach lining- I'd leave her be if the only issue is reduced Iron levels, just keep on with the iron tablets

 

[Helly68]

@Muttimuggle - I recently had a gastrocopy. It isn't a pleasant experience. The issues of whether to tell her or not and how to treat any posisble things that are found, are one thing. Given the quite invasive nature of the gastroscopy, I know that my father, early to mid stage alzheimers, would not have tolerated this procedure at all. Even with sedation. He recently had a pacemaker fitted, and even with sedation that was a battle.
In preparation for his pacemaker insertion, I did try to talk to him and discuss with his doctors, it wasn't easy. What swayed him was a neighbour (who has adpoted him as a kind of surrogate Dad), telling him she had one and that after a while you wouldnt know you had it.
I guess, the issues for me would be, what are the risks of not having the treatment? I a not sure my father understood this, but my view was, if cardiologists reckon you need a pacemaker urgently, the alternatives may not be that good. Theres the tolerance of the procedure itself, and also as you raise, what you would do if something untoward was found.
I think there is a strong argument for limiting treatment if it is unlikely to bring much benefit and would cause the patient stress and upset. Daddy is recovering well now, but the day of the treatment was traumatic and I really worried if we had done the right thing. I think we did, but cardiac problems are, of their nature very serious.
The responsibility is awful. The only thing I would say is, be sure to speak to the nurse before the treatment and be candid about the other conditions and her suitability for further treatment.

 

[Muttimuggle]

@Muttimuggle - I recently had a gastrocopy. It isn't a pleasant experience. The issues of whether to tell her or not and how to treat any posisble things that are found, are one thing. Given the quite invasive nature of the gastroscopy, I know that my father, early to mid stage alzheimers, would not have tolerated this procedure at all. Even with sedation. He recently had a pacemaker fitted, and even with sedation that was a battle.
In preparation for his pacemaker insertion, I did try to talk to him and discuss with his doctors, it wasn't easy. What swayed him was a neighbour (who has adpoted him as a kind of surrogate Dad), telling him she had one and that after a while you wouldnt know you had it.
I guess, the issues for me would be, what are the risks of not having the treatment? I a not sure my father understood this, but my view was, if cardiologists reckon you need a pacemaker urgently, the alternatives may not be that good. Theres the tolerance of the procedure itself, and also as you raise, what you would do if something untoward was found.
I think there is a strong argument for limiting treatment if it is unlikely to bring much benefit and would cause the patient stress and upset. Daddy is recovering well now, but the day of the treatment was traumatic and I really worried if we had done the right thing. I think we did, but cardiac problems are, of their nature very serious.
The responsibility is awful. The only thing I would say is, be sure to speak to the nurse before the treatment and be candid about the other conditions and her suitability for further treatment.

Thank you. It does help to air this and chew this over with other members who have had a similar sort of experience. I am glad your Dad did well in the end. That must have been a relief and a validation for your decision.

 

[Muttimuggle]

Presumably Iron is absorbed thru the stomach lining- I'd leave her be if the only issue is reduced Iron levels, just keep on with the iron tablets

Thank you.

 

[CAL Y]

My husband had mixed dementia and was diagnosed with liver cancer.
He was then sent an appointment for a colonoscopy.
As his POA, I decided that it would be cruel for him to have any more interventions and just cancelled the appointment. He died less than two months later.

Maybe the NHS has an obligation to treat people but what are they going to do if you just refuse treatment, he didn’t have capacity and they were never going to make him better.

 

[Palerider]

My mother had a CT scan in April this year because the GP found that her bloods showed a further decrease in iron levels. The first option was a gastroscopy and colonoscopy but, in discussing this with the GP we talked about how, if anything cancerous were found, what would be an appropriate thing to do anyway. My mother is 90 and has many different ailments such as a leaky heart valve, CKD, irregular heart beat, skin which is prone to precancerous lesions and high but controlled blood pressure. She is also on large mix of different medications including a blood thinner. She does, however, still live alone and now has care in twice a day. Mum despite still often manages a daily walk with a rollator.

Anyway, in April the nurse who spoke to me on the phone was sympathetic about my concerns about my mother's potential ability to undergo, in particular, a colonoscopy and her ability to recover from any potential surgery, should cancer be found. My mother was put on iron tablets and her blood count is back to normal and I think she seems a little more contented and happy at the moment.

So, I wasn't expecting the gastroscopy nurse to phone today to tell me that the results of the April scan were nothing alarming in particular but that a thickening was found on the stomach wall. The normal procedure now is a gastroscopy to investigate. The fact that her iron levels are normal is "to be expected" on the iron tablets. She has to decide(she doesn't know yet) whether or not to go ahead with this. I have to go to discuss this with her Monday before phoning the nurse again with a decision. It is a difficult thing to spell out to her but she can be easily swayed in any direction((at least on a temporary basis) as her understanding of things can get confused....so she will sometimes just opt for agreeing - which I don't necessarily want. In short, I hate being largely responsible for these big decisions. She may have difficulty seeing the bigger picture and I am tending to err on the side of leave all alone since she is eating well and seems a bit better than normal(apart from the dementia).

Even bringing the thing up may set her into worrying about it and making up the story in her own head that she probably has cancer(...and that we are "leaving her to die").
I don't know what to do, what to think or how to really talk to her about it. The NHS is legally obliged to let the patient have the next line of procedure regardless of the age. I don't have POA (yet) but I would still be discussing with her anyway and trying to go along with her wishes.
Maybe someone has a similar experience on here. I'd appreciate hearing how you proceeded.

Mmm its is difficult to know what to do for the best, but your not on your own with this and sometimes its best to ask the specialists involved on their viewpoint because often they make the decision anyway on what would be in best interests. My mum where she is now is too frail for any significant intervention and although painful to acknowledge that it is also the reality. So for example even if she went on for an investigation such as gastroscopy, it is unlikely anything further would be offered, other than any immediate treatment if they find something like a bleed when they scope -if it can be dealth with there and then. It is very difficult to be objective when our heart tells us otherwise. Respecting peoples wishes can be unrealistic, when their expectations are beyond what is most likey the best outcome -I know that only too well in my own experiences more recently my sisters journey when the BIL's expectations didn't match the reality

The teams who manage this are obliged to look at all of the options and include family /carers in the discussion even if they don't have LPA -this difference is that you are not making a decision, but contributing to one.

 

[Canadian Joanne]

As difficult as it is to make these decisions on one's own, I don't think that getting your mother involved works any more. If it were my mother, I would let things slide.

 

[Muttimuggle]

Thank you for these replies. I went to see her today and brought this up, explaining it in as simple terms as I could.My mother has always seemed to enjoy any intervention, in principle, in hospital and she actually likes being in hospital. With this in mind I was cautious, whilst trying not to impress my own bias about it. I hope I did that. I had also, of course, to try not to scare her about what the findings from the CT scan were. Thing is, she may well have forgotten all these things by Monday. In any case her response today was that she didn't want anything done.
There is another issue coming up too, not sure when ...and that is having a cataract removed. She is partially sighted. She says she wants this. I am trying to get through to the eye hospital to put my mind at rest about her decision.

 

[Palerider]

As difficult as it is to make these decisions on one's own, I don't think that getting your mother involved works any more. If it were my mother, I would let things slide.

I completely agree with this view, but the person left behind has to put their own conscience to rest as well. It is always worth speaking to the specialists involved and having an open conversation about where matters are at. It doesn't matter if someone has dementia or not, what matters is their own insight and even people without dementia can have little or no insight into what things really mean. While letting things slide may be a good way forward, it does not resolve any deliberation that someone may then have to live with.

 

[Palerider]

Thank you for these replies. I went to see her today and brought this up, explaining it in as simple terms as I could.My mother has always seemed to enjoy any intervention, in principle, in hospital and she actually likes being in hospital. With this in mind I was cautious, whilst trying not to impress my own bias about it. I hope I did that. I had also, of course, to try not to scare her about what the findings from the CT scan were. Thing is, she may well have forgotten all these things by Monday. In any case her response today was that she didn't want anything done.
There is another issue coming up too, not sure when ...and that is having a cataract removed. She is partially sighted. She says she wants this. I am trying to get through to the eye hospital to put my mind at rest about her decision.

I think you seriously need to accept your mum has little or no insight and speak to the specialists involved which you can do by making an appointment. In the end many people wrongly assume it is 'their decision' -it is not ever a single person decision but made by various unputs one of which will be yours and the rest by the medical professionals who have to decide what would be best given all of the facts.

 

[Muttimuggle]

I think you seriously need to accept your mum has little or no insight and speak to the specialists involved which you can do by making an appointment. In the end many people wrongly assume it is 'their decision' -it is not ever a single person decision but made by various unputs one of which will be yours and the rest by the medical professionals who have to decide what would be best given all of the facts.

Yes, I will speak with the assigned nurse on the phone from Mum's house on Monday with mum present and ask some questions. Today this nurse kept saying that, for legal reasons, he could not give his opinion about what was the best course of action, that the decision had to be my mother's, guided by me. He did say that he could understand my concerns and mught feel the same about his own mother.

 

[Palerider]

Yes, I will speak with the assigned nurse on the phone from Mum's house on Monday with mum present and ask some questions. Today this nurse kept saying that, for legal reasons, he could not give his opinion about what was the best course of action, that the decision had to be my mother's, guided by me. He did say that he could understand my concerns and mught feel the same about his own mother.

No disrespect to the nurse they are just doing what they should do, you need to ask for an appointment with the overseeing consultant, this is the person who will decide on what is best, not the nurse

 

[Duggies-girl]

@Muttimuggle I have just caught up with this post and I can't quite understand why your mum needs a gastroscopy. If she isn't actually having problems then what are they investigating.

My dad had four gastroscopies in total, the first to investigate why he could not keep food down which had caused a rapid weight loss so it was a necessary procedure. They found a tumour and dad had a stent fitted with two more at later dates. This was the only treatments that dad had and he did very well until he died two years later aged almost 90

All of this was discussed with dads consultant beforehand and we all agreed that it was the best course of action. It was explained to dad and he understood at that moment but the fact was that he needed the procedure or he would have soon died and I don't think that I could possibly have refused if I had wanted to even with POA Dad's consultant had the final say. She offered what was in her opinion the best way to proceed and we followed her advice. She said dad could have any treatment that would improve his wellbeing and comfort but she would not offer any treatment that could make him unwell so no chemo.

If dad had been eating well like your mum then I would have felt the same as you and I would have questioned the need for an investigation. As @Palerider says you need to have a meeting with the consultant to discuss pro's and con's before any decision is made and I think it is likely that they will say leave well alone unless something changes.

 

[Lawson58]

A few years ago and when my husband’s health was overall a bit better than now, he had an internal bleed and had a colonoscopy and a gastroscopy both of which he handled well but revealed nothing. The doctor to talked to us both about doing another procedure using a camera that goes all the way through but admitted that if anything was found, he would be unlikely to handle the surgery so nothing was done. He has had iron infusions to treat his iron deficiencies.

I think this something you need to decide together with the doctor. I doubt if your mum sounds as if she has capacity so sadly the responsibility remains with you. I have to say your mum sounds as if she has had enough and I wonder if you would be doing her a favour by just managing her care so that she feels safe and comfortable.

 

[Muttimuggle]

Thank you for these posts which all helped me decide what to do. So yesterday was the day when I had to make the phone call back to the nurse with my mother present so that she could state her preferences. This is because I do not yet have POA (actually another big issue which I am waiting on from the solicitor who granted that she had sufficient capacity...all another story).

I prepared what I wanted to say and ask to this nurse. Firstly I said that I was wondering if it might be better for me to speak directly to the consultant who'd analysed the scan which shows the "thickening" in her stomach. Would he or she be able to comment more and advise around the possible pathways for whatever was found? The nurse said that the radiologist in question would not be able to say any more really.

Then I said - if something which was not cancer were found would there be any other things treatments my mother could have which would therefore be unintrusive. Basically, as my mother is already on Omeprazole for stomach acid, caused potentially by the interaction of many tablets, the answer was no, not really.

He agreed that all the potential treatments for a found stomach cancer would be inappropriate for my mother. His only real argument for why the gastroscopy might be a good thing was that it would allow for better palliative care. So I counteracted that by saying that the worry of knowing that you were living with an untreatable cancer would go against this benefit - especially when your health, otherwise, was OK - apart of course from all the other ailments and the dementia. My mother has no stomach pain, no nausea, eats fairly well and is physically a little better than she was back in April when she had the scan. This might be to do with the iron tablets she now takes.
It is interesting how the NHS works really as this was the same nurse I spoke with in April prior to the scan(and this is the haemetology dept(because it was an iron deficiency which she was referred for). Then, he also had the same feeling as me, that even if cancer were found nothing really could be done at her age and in her health. He more or less said, yesterday, that he was following protocol. Things have to be offered (so that you don't come back and sue!?).

I also asked if my mother could go back into the health service for investigations if she started to have stomach problems. He said yes.

My mother witnessed all this and I had tried to explain it all in simple terms before this phone call. Then I put her on the phone so that he could ask here her wishes. He never seemed to ask anything. My Mum prattled on about the bruise (and keloid scar she has on her arm after a fall and how her back aches and that she goes for a walk every day). She passed the phone to me then and he said that he didn't think my mother was going to understand his questions and he also urged me to seek POA - which I am doing.

(And this is the other emotionally draining story)- I phoned the solicitor just now with whom my Mum passed a capacity test with a month ago...but who seems to be dragging his heels - but this may be because I made him aware that my absent, and often bullying, brother who my Mum wanted as joint POA for her with me was asking for no communication from me whilst he is away another 3 months in the States on holiday. My mother knows, when I have reminded her, that I am seeing her most, helping her most and dealing with things for her, and that to have POA with 2 of us who do not get along would be worse for her. I am hoping the solicitor will raise this question with her and that we can do the sensible thing here.

 

[Palerider]

Thank you for these posts which all helped me decide what to do. So yesterday was the day when I had to make the phone call back to the nurse with my mother present so that she could state her preferences. This is because I do not yet have POA (actually another big issue which I am waiting on from the solicitor who granted that she had sufficient capacity...all another story).

I prepared what I wanted to say and ask to this nurse. Firstly I said that I was wondering if it might be better for me to speak directly to the consultant who'd analysed the scan which shows the "thickening" in her stomach. Would he or she be able to comment more and advise around the possible pathways for whatever was found? The nurse said that the radiologist in question would not be able to say any more really.

Then I said - if something which was not cancer were found would there be any other things treatments my mother could have which would therefore be unintrusive. Basically, as my mother is already on Omeprazole for stomach acid, caused potentially by the interaction of many tablets, the answer was no, not really.

He agreed that all the potential treatments for a found stomach cancer would be inappropriate for my mother. His only real argument for why the gastroscopy might be a good thing was that it would allow for better palliative care. So I counteracted that by saying that the worry of knowing that you were living with an untreatable cancer would go against this benefit - especially when your health, otherwise, was OK - apart of course from all the other ailments and the dementia. My mother has no stomach pain, no nausea, eats fairly well and is physically a little better than she was back in April when she had the scan. This might be to do with the iron tablets she now takes.
It is interesting how the NHS works really as this was the same nurse I spoke with in April prior to the scan(and this is the haemetology dept(because it was an iron deficiency which she was referred for). Then, he also had the same feeling as me, that even if cancer were found nothing really could be done at her age and in her health. He more or less said, yesterday, that he was following protocol. Things have to be offered (so that you don't come back and sue!?).

I also asked if my mother could go back into the health service for investigations if she started to have stomach problems. He said yes.

My mother witnessed all this and I had tried to explain it all in simple terms before this phone call. Then I put her on the phone so that he could ask here her wishes. He never seemed to ask anything. My Mum prattled on about the bruise (and keloid scar she has on her arm after a fall and how her back aches and that she goes for a walk every day). She passed the phone to me then and he said that he didn't think my mother was going to understand his questions and he also urged me to seek POA - which I am doing.

(And this is the other emotionally draining story)- I phoned the solicitor just now with whom my Mum passed a capacity test with a month ago...but who seems to be dragging his heels - but this may be because I made him aware that my absent, and often bullying, brother who my Mum wanted as joint POA for her with me was asking for no communication from me whilst he is away another 3 months in the States on holiday. My mother knows, when I have reminded her, that I am seeing her most, helping her most and dealing with things for her, and that to have POA with 2 of us who do not get along would be worse for her. I am hoping the solicitor will raise this question with her and that we can do the sensible thing here.

I am a bit confused, how is a nurse giving what is medical advice? I certainly wouldn't accept this. I think also the wrong consultant was referred to when they mentioned a radiologist, the overseeing consultant at this stage will be a gastroenterologist and I don't understand why this nurse is not making an appointment for you to be updated on what the opinon is and likely treatment if any and whether your mums case has been referred to an MDT meeting in the specialty. I think the problem here is that you are not getting the direct answers you need from the right source.

Asking someone with cogntive impairment what their wishes would be via telephone is generally just not a good way forward. Is your mum still under the gastro team or does she need be re-referred? As to the LPA in the end I wouldn't worry too much because in my experience the medics will make the big decisions anyway in what is best interests. I think at you mums age and her general health they would be more conservative.

Sorry I just think you deserve more than what is being offered in terms of finding out what the bottom line is for your mum and also for your own peace of mind

 

[Muttimuggle]

I am a bit confused, how is a nurse giving what is medical advice? I certainly wouldn't accept this. I think also the wrong consultant was referred to when they mentioned a radiologist, the overseeing consultant at this stage will be a gastroenterologist and I don't understand why this nurse is not making an appointment for you to be updated on what the opinon is and likely treatment if any and whether your mums case has been referred to an MDT meeting in the specialty. I think the problem here is that you are not getting the direct answers you need from the right source.

Asking someone with cogntive impairment what their wishes would be via telephone is generally just not a good way forward. Is your mum still under the gastro team or does she need be re-referred? As to the LPA in the end I wouldn't worry too much because in my experience the medics will make the big decisions anyway in what is best interests. I think at you mums age and her general health they would be more conservative.

Sorry I just think you deserve more than what is being offered in terms of finding out what the bottom line is for your mum and also for your own peace of mind

Thank you

 

[canary]

As Palerider has said - it is not the consultant who viewed the scan (radiologist) that you need to speak to, but the consultant who is proposing the gastroscopy (gastroenterologist).

You should be able to find out their name and then contact their secretary, explaining your concerns and asking to speak to the consultant.

I did this when mum had a stroke and they were talking about doppler scans and stents, which I did not think was at all appropriate for mum in advanced dementia. When I spoke to the consultant he agreed with me and I could hear the relief in his voice. All procedures were then cancelled.

 

[Muttimuggle]

As Palerider has said - it is not the consultant who viewed the scan (radiologist) that you need to speak to, but the consultant who is proposing the gastroscopy (gastroenterologist).

You should be able to find out their name and then contact their secretary, explaining your concerns and asking to speak to the consultant.

I did this when mum had a stroke and they were talking about doppler scans and stents, which I did not think was at all appropriate for mum in advanced dementia. When I spoke to the consultant he agreed with me and I could hear the relief in his voice. All procedures were then cancelled.

My mother has never been referred to a gastro team. She had anaemia which was unexplained. She was referred to haematology. Haematology decided that the best course of action would be to give her a CT scan and put her on iron tablets. That happened in April. We heard nothing thereafter. Mum's iron levels are normal now. The recent phone call was from haematology again, only now reporting the results of the CT scan - showing the "thickening" on the stomach wall. Mum is a little brighter in this current phase, a little happier and more physically able, going again for some walks with her rollator. She has many other health issues apart from the anaemia such as a leaky heart valve, irregular heartbeat, skin problems, CKD, apart from the increasing dementia. I thought I had made a sensible decision after some explaining to her yesterday. What is the point in knowing you have cancer if no-one is going to treat it? She will be 91 this year. I do worry incessantly about my decisions but I cannot really see another option which seems sensible. So what is the point in going for the gastroscopy, I ask myself, if you either learn you have cancer and have to live with it or you learn you don't have cancer. In my Mum's mind now, she doesn't have it and her health seems "fine". I was thinking that if she had some stomach symptoms(which she does not have at all now) she could re-enter the NHS system for a gastroscopy to try to find out. What do you think about my thinking?
PS- I don't think any referral to a gastroenterologist has been made. If we had accepted to gastroscpy I believe this would have been the next course of action and the rferral would have been sent on to this department.