Moral dilemma.

[Champers]

I’ve received a phone call from Mother’s CH and a subsequent one from the doctor’s practise that looks after the residents medical care.

Routine blood tests have shown that Mother is severely anaemic which apparently suggests either an internal bleed - no obvious evidence - or something like a bowel cancer. I have POA and the doctor has asked me whether I think it is appropriate for Mother to have any invasive investigative procedures to rule out causes. He also suggested that a blood transfusion could be done but it would have to be done in a hospital environment.

Mother has always had an absolute paranoid view of medicine and hospitals and even before dementia, would never respond to routine offers of health checks from her surgery or seek help for ailments, preferring to self treat - often inappropriately!

I had the impression the doctor was gently trying to steer me away from medical intervention and to focus on managing the symptoms to keep her comfortable. Because of her state of mind and confusion I think he’s probably right but, whilst I’ve never had a loving relationship with her, I’m struggling with the dilemma of not wanting to feel like I’m punishing her for being such an awful person to me.

As I’ve posted before, she has done some terrible things throughout her life and caused awful pain. However, I guess she deserves and is entitled to receive full care but I’m struggling with trying to separate my own history with her and the ‘right’ decision.

Does that make any sense?

 

[Emmzzi]

Hello,

I am sorry you have this to think about. I have tended to answer, "in better health, I think she would have said she did not want to visit hospital, because she disliked them very much." Your role is not to replace medical judgement, just to fill in some wishes and memory. I think you can do this without feeling you are making a choice for her; just be honest in your recollection of her wishes.

Em

 

[Banjomansmate]

When asked by his Care Home if The Banjoman should have a flu injection I replied that he had refused one while capable of making his own decisions so I didn’t think it appropriate for him to have one whilst in their care. If you are pretty sure your Mother wouldn’t want to go to hospital for any form of treatment then there is your answer.
We all feel doubtful about making decisions for other people but if you have a good idea if their wishes then you can only do what you believe they would want even though , up to a point, it is detrimental to their welfare. As it sounds as though she would be more distressed by any invasive treatment in hospital it seems best that she doesn’t have to go through it at all.

 

[Louise7]

Routine blood tests have shown that Mother is severely anaemic which apparently suggests either an internal bleed - no obvious evidence - or something like a bowel cancer. I have POA and the doctor has asked me whether I think it is appropriate for Mother to have any invasive investigative procedures to rule out causes. He also suggested that a blood transfusion could be done but it would have to be done in a hospital environment.

We were in exactly the same situation earlier this year. Apparently if bowel cancer is a possibility there are certain NHS timescales and processes that have to be followed, so we were also asked about invasive procedures, with the GP also giving the impression that he was steering us away from any invasive tests. Anyhow, he suggested testing a stool sample and we agreed to do this and await the results before making a decision about any invasive procedures such as a colonoscopy. The stool sample was clear - no blood - and it subsequently transpired that the care home had been continuing to give laxatives daily (as prescribed by the hospital some time previously) even though Mum was not constipated, and this had caused the anaemia. Mum is now on a daily iron tablet, her red blood count has risen to an acceptable level and she is much brighter.

So my point is that sometimes a condition which seems potentially serious isn't, and there are non-evasive tests/investigations that can be conducted prior to anything evasive being considered. Presumably your Mum's GP will be conducting some non-evasive tests too?

 

[Agzy]

I’ve received a phone call from Mother’s CH and a subsequent one from the doctor’s practise that looks after the residents medical care.

Routine blood tests have shown that Mother is severely anaemic which apparently suggests either an internal bleed - no obvious evidence - or something like a bowel cancer. I have POA and the doctor has asked me whether I think it is appropriate for Mother to have any invasive investigative procedures to rule out causes. He also suggested that a blood transfusion could be done but it would have to be done in a hospital environment.

Mother has always had an absolute paranoid view of medicine and hospitals and even before dementia, would never respond to routine offers of health checks from her surgery or seek help for ailments, preferring to self treat - often inappropriately!

I had the impression the doctor was gently trying to steer me away from medical intervention and to focus on managing the symptoms to keep her comfortable. Because of her state of mind and confusion I think he’s probably right but, whilst I’ve never had a loving relationship with her, I’m struggling with the dilemma of not wanting to feel like I’m punishing her for being such an awful person to me.

As I’ve posted before, she has done some terrible things throughout her life and caused awful pain. However, I guess she deserves and is entitled to receive full care but I’m struggling with trying to separate my own history with her and the ‘right’ decision.

Does that make any sense?

The basis of the POA is to, as far as possible, fulfil what she would have wanted and so have a clear conscience. I have already asked my OH what she would opt for in similar or ‘DNR’ situation and she answered, “ Just let me go.”

 

[Sirena]

I think possibly you are 'over-compensating' - you think that maybe you should let her have treatment to prove you aren't 'punishing' her.

But allowing treatment would not make sense from the rest of what you've said. The doctor seemed to be steering you away from invasive treatment and towards managing symptoms, and you say that pre-dementia your mother would likely have chosen the same route. If you decide against treatment, you will be in agreement with the prevailing view of the doctor and your mother.

 

[Palerider]

There are always 'shades of grey' and no one decision will be ideal. I think you had already answered your own question @Champers. You have shown fidelity and thought about what would be of most benefit in the circumstances, I don't think you can ask for much more than that of yourself or the situation. The best way I think is to ask yourself what action if any would cause the least harm and draw into that your mums wishes, which you by all acounts have done.

 

[Champers]

Thank you for all your replies - they are appreciated and have given me a much broader perspective and are therefore, very reassuring.


I think I’m worrying that I’m guilty of denying Mother treatment and I have to trust the doctor that if he thought she could either make the decision or even cope, he wouldn’t have asked me in the first place. Even trying to get her to her GP, the Memory Clinic and the subsequent brain scan to confirm her Alzheimer’s diagnosis took monumental effort and lots of subterfuge to get any compliance. She was very aggressive and confrontational with the staff - and that was totally non invasive!

Louise7’s point is also very valid. I need to ensure that the obvious has been ruled out before we all assume that something sinister is going on too.

 

[Jale]

If it were my Mum in a similar position, to be honest I wouldn't put her through anything invasive. About 3 weeks ago Mum had an infection and I sat with her in her room whilst waiting for the GP to go in and see her - she got herself so worked up I thought she would have a heart attack. She couldn't understand/remember what was being said and was terrified that "they were going to take her away".

I'm sure that whatever you do decide to do, you will have your Mum's best interests at heart, even though it may not feel like it

 

[Beate]

I don't see a moral dilemma here. In her state, it's kinder not to do invasive procedures. If that is also what she would have wanted and the doctor recommends, you're in the clear all the way round. Stop feeling guilty.

 

[Lynmax]

My mum has just been diagnosed with breast cancer and with the agreement of her GP and the consultant, she will not be having aggressive treatment, just oestrogen tablets which she will refuse to take! I know that is the right decision based on previous refusals to take medication and her advanced AZ.

 

[Bod]

I’ve received a phone call from Mother’s CH and a subsequent one from the doctor’s practise that looks after the residents medical care.

Routine blood tests have shown that Mother is severely anaemic which apparently suggests either an internal bleed - no obvious evidence - or something like a bowel cancer. I have POA and the doctor has asked me whether I think it is appropriate for Mother to have any invasive investigative procedures to rule out causes. He also suggested that a blood transfusion could be done but it would have to be done in a hospital environment.

Mother has always had an absolute paranoid view of medicine and hospitals and even before dementia, would never respond to routine offers of health checks from her surgery or seek help for ailments, preferring to self treat - often inappropriately!

I had the impression the doctor was gently trying to steer me away from medical intervention and to focus on managing the symptoms to keep her comfortable. Because of her state of mind and confusion I think he’s probably right but, whilst I’ve never had a loving relationship with her, I’m struggling with the dilemma of not wanting to feel like I’m punishing her for being such an awful person to me.

As I’ve posted before, she has done some terrible things throughout her life and caused awful pain. However, I guess she deserves and is entitled to receive full care but I’m struggling with trying to separate my own history with her and the ‘right’ decision.

Does that make any sense?

We are in almost the same situation,(but no Care home at present) our GP has had the same conversation with us.
The upshot is that MiL is now on Iron tablets, and no further investigations are planned, for the same reasons.
If you can get the Iron tablets into her regularly, then she may well brighten up. But will suffer the normal side effects of black poo, and the risk of constipation.
If the GP can get a blood sample! then there are markers in the blood for Bowel cancer, which will give an indication.
Just keep a weekly record of her weight, to see if there is a trend that needs addressing.

Bod

 

[Lawson58]

My ex husband had a minor heart attack but was very ill and further investigations discovered a large tumor on the lung. He had been dealing with prostate cancer for years and at his age and with all things considered, no further investigations were undertaken and he died a couple of weeks ago.

To me, it would be better to get a good palliative care program in place than to put her through procedures that could cause her discomfort and distress.

 

[Sarasa]

Hi @Champers, as others have said I think if non invasive tests can be carried out that would be good. It may, as @Louise7 said, something simple that just needs iron tablets. Unlike your mum, mine was always insisting doctors sent her off for tests when she was concerned about things, and her GP tended to go along with it for a quiet life, which rather annoyed the x-ray department at the local hospital. Mum would then say that doctors didn't know anything and she knew better! Let's hope I don't ever have to make those sort of decisions for her.

 

[Grahamstown]

The moral dilemma title of this thread caught my eye because I feel that I am faced with this issue every day about my husband. In his case he is starving himself slowly because he will barely eat anything and the supplements can only do so much. However I feel that his fate is in my hands and that the full burden is mine. I just think of the instructions to the attorney “to act in the best interests of the person” and that is what I try to do. This disease is terminal but lengthy and I try to avoid doing anything that will prolong his agony more, without neglecting common humanity, but keep him comfortable and as contented as possible with minimum intervention.

 

[Lawson58]

The moral dilemma title of this thread caught my eye because I feel that I am faced with this issue every day about my husband. In his case he is starving himself slowly because he will barely eat anything and the supplements can only do so much. However I feel that his fate is in my hands and that the full burden is mine. I just think of the instructions to the attorney “to act in the best interests of the person” and that is what I try to do. This disease is terminal but lengthy and I try to avoid doing anything that will prolong his agony more, without neglecting common humanity, but keep him comfortable and as contented as possible with minimum intervention.

Your post made me feel so sad for you, sad that you feel so burdened and so responsible for something that is totally beyond your control. I wonder if your husband was terminally ill with cancer, would you feel the same sense of carrying his life in your hands? Dementia is sadly going to have its way with your husband and no matter how hard you try, no matter that you are doing your very best, his fate is going to be determined by his illness, just as if he had cancer, or cardiac failure, or a stroke, or even a virulent dose of flu.

I hope that you find a way to be kind to yourself, be gentle to your soul and know that some battles can't be won - ever.

 

[Grahamstown]

wonder if your husband was terminally ill with cancer, would you feel the same sense of carrying his life in your hands?

Oh you are right because I had the same issue with my mother dying of lung cancer and we didn’t have the same sense of responsibility at all. The difference is that she had her mental faculties right to the end and could make her own decisions. He cannot and doesn’t know what he is doing and I think that’s the difference. I must stop obsessing about it but I do get desperate as he sits drooping over tiny amounts of food, and wouldn’t eat if I didn’t tell him to take every mouthful. That’s the moral dilemma, should I just stop?

 

[Grahamstown]

And the other problem is that I can’t talk about this with either family or friends because their instinct is that he should be fed. If he had cancer or something physically debilitating they would accept it but because it’s a hidden disease they just see him fading away and feel that ‘something must be done’, but of course they don’t know what. Yesterday old friends visited and saw this at first hand and I know it upset them. There is nothing I can do though. Thank goodness for TP.

 

[canary]

There are many things about dementia that cant be talked about to family and friends.
Very few people who have not been through it know about the way that someone who is dying from dementia dies very slowly over days, weeks, or even months - their body shuts down gradually and does not need much in the way of food and at the end does not need any. Many people worry that they are starving to death, but actually its the other way round. They stop eating and drinking because they are already dying.

Offering food is the right thing to do, but do not force them and do not worry if they refuse
((((((((((((((((((((((((((hugs)))))))))))))))))))))

 

[DesperateofDevon]

I have walked this path & now Dads passed do not regret my decisions to stop all but comfort care meds.
Difficult days but I hope peace is found soon.
Xxx