My Partner aged 75 has been referred for Memory Assessment. Subsequent to this he has been diagnosed with an abdominal aorta aneurysm which has grown to a size requiring an endovascular repair. Surgical team are insisting on the memory assessment before they operate and have advised, based on an assumption of a nurse specialist, that if treatment cannot reverse his present cognitive abilities, they will not operate. I have known him for 42 years and while I have noticed memory decline, he functions independently on a daily basis. I feel that the nurse specialist's opinion is not justification for this decision to have been made by the surgical team. The Memory Clinic have advised they cannot see him until Jan/Feb 2022. We both feel we are living with a time bomb as if the aneurysm bursts or grows to a size where an endovascular operation cannot be carried out he will not survive. Has anyone else been refused surgical intervention because they have a dementia or alzheimers diagnosis? I am absolutely shocked struggling with the resultant stress which is impacting on my health. Any advice would be appreciated. We live in Scotland.
Refusal of medical treatment
- Thread starter Lilyanna
- Start date
PS I should have advised it is the Vascular Nurse Specialist who has made this judgement
My mum had a large AAA and she was desperate to have the repair but her surgeon would not operate. She was younger than your partner at the time and was willing to take the risk of having the operation but the surgeon was not willing to take the risk. She also felt like she was living with a time bomb and the worry spoilt her remaining years. Mum also had some other problems, she had a low kidney function and I think this was something that her surgeon was taking into account.
My mum did get her operation as an emergency when her aorta ruptured while watching TV one evening. The operation was successful although the recovery was very stressful as she was in the ICU for weeks before she came home, she was never really well again and was well on the way to total renal failure when she died of a massive stroke six months later.
My mums brother also had an AAA he was older than mum and he did get the operation and he lived a long and healthy life afterwards.
I think that you need to have a proper chat with the consultant surgeon who would be in charge of your partners treatment to discuss the pro's and con's of any operation and there are a lot of risks especially to the older patient. It sounds like you have just been dismissed by the vascular nurse and that is not really acceptable, you need to sit down face to face and have the facts given to you so that you fully understand any likely complications and are able to make your own informed decision as what should be done. The surgical team will have the final say but your partner should not just be fobbed off, it is important to him.
My mum did get her operation as an emergency when her aorta ruptured while watching TV one evening. The operation was successful although the recovery was very stressful as she was in the ICU for weeks before she came home, she was never really well again and was well on the way to total renal failure when she died of a massive stroke six months later.
My mums brother also had an AAA he was older than mum and he did get the operation and he lived a long and healthy life afterwards.
I think that you need to have a proper chat with the consultant surgeon who would be in charge of your partners treatment to discuss the pro's and con's of any operation and there are a lot of risks especially to the older patient. It sounds like you have just been dismissed by the vascular nurse and that is not really acceptable, you need to sit down face to face and have the facts given to you so that you fully understand any likely complications and are able to make your own informed decision as what should be done. The surgical team will have the final say but your partner should not just be fobbed off, it is important to him.
I have respect for specialist nurses but surely they should not be allowed to make a decision of this gravity. Given the potential for a catastrophic outcome without surgery, I would ask that a consultant review and give clear reasoning for refusing treatment. Yes a general anasthetic is a big problem but this needs to be balanced . 75 is not that old these days and I could understand if this was a much more elderly patient with more advance symptoms.
To clarify regarding anesthetic I was also told by the vascular nurse that the operation would be the endovascular surgery and he would be given a spinal block not a general anesthetic. Also he has gone through the pre-op so they have assessed his physical health and not raised any concerns regarding this.
Hi Lilyanna.
I sympathize with your situation. I am main carer for my wife who is 69 and diagnosed Alzheimer's 2yrs ago. My wife manages OK with the Alzheimer’s, it mainly manifests itself with short term memory loss and a constant repetition of the same questions. My wife also suffers with Arthritis for many years and the deterioration of her Arthritis has now made it difficult to stand and walk because of a disintegration of the left hip joint. This has resulted in the left leg being 2” shorter than the right leg, and now my wife is pretty much house bound and in constant pain. We eventuality got to see an Orthopedic consultant 3 weeks ago, (Oct21) expecting to be referred for a hip replacement operation. However, the Orthopedic Consultant is not prepared to do a hip replacement operation because my wife is stage 2 Dementia, sighting “that the risks associated with major surgery, that trauma and Anesthetic, can cause Dementia to deteriorate greatly after the operation”. “Also Dementia patients have difficulty following instructions after the operation and the risks of causing damage such as dislocation are to great.” All he could do was to refer my wife back to the GP and onward to ‘pain management'.
Today I spoke to the GP and he has received a letter back from the consultant confirming what he told my wife and I during the consultation and the GP will refer us onto ‘pain management’.
To say we are disappointed with this situation is an understatement. It seems my wife has been consigned to a life on strong pain killers, she takes Morphine now to ease the pain, I am not sure what effect that has on Dementia. There are some anecdotal stories of people’s Dementia worsening after major surgery. At this moment in time we are both very disappointed with the medical help we are receiving. I am thinking of paying to ask for a second opinion but this may sour the relationship we have with our GP, for what that is worth at the moment.
I wish you all the best in your jouney with your partner.
I sympathize with your situation. I am main carer for my wife who is 69 and diagnosed Alzheimer's 2yrs ago. My wife manages OK with the Alzheimer’s, it mainly manifests itself with short term memory loss and a constant repetition of the same questions. My wife also suffers with Arthritis for many years and the deterioration of her Arthritis has now made it difficult to stand and walk because of a disintegration of the left hip joint. This has resulted in the left leg being 2” shorter than the right leg, and now my wife is pretty much house bound and in constant pain. We eventuality got to see an Orthopedic consultant 3 weeks ago, (Oct21) expecting to be referred for a hip replacement operation. However, the Orthopedic Consultant is not prepared to do a hip replacement operation because my wife is stage 2 Dementia, sighting “that the risks associated with major surgery, that trauma and Anesthetic, can cause Dementia to deteriorate greatly after the operation”. “Also Dementia patients have difficulty following instructions after the operation and the risks of causing damage such as dislocation are to great.” All he could do was to refer my wife back to the GP and onward to ‘pain management'.
Today I spoke to the GP and he has received a letter back from the consultant confirming what he told my wife and I during the consultation and the GP will refer us onto ‘pain management’.
To say we are disappointed with this situation is an understatement. It seems my wife has been consigned to a life on strong pain killers, she takes Morphine now to ease the pain, I am not sure what effect that has on Dementia. There are some anecdotal stories of people’s Dementia worsening after major surgery. At this moment in time we are both very disappointed with the medical help we are receiving. I am thinking of paying to ask for a second opinion but this may sour the relationship we have with our GP, for what that is worth at the moment.
I wish you all the best in your jouney with your partner.
Endovascular is minimally invasive and goes through the groin. The recovery period is much shorter than the traditional procedure with only a short period spent in hospital. The outcome is generally good and far preferable to open surgery. If it were me I would take the risk especially if there are no other health problems.
It's an awful thing to be just left to live with it. My mum was frightened to do anything and it spoilt everything for my parents.
It's an awful thing to be just left to live with it. My mum was frightened to do anything and it spoilt everything for my parents.
I think that the key considerations are whether the person can withstand the surgery, cope with the side-effects of the operation and make a good recovery afterwards. It looks as if your partner has been rejected purely on the grounds of his dementia which, from what you have said, isn’t that advanced. I would be asking:
• Would he be having the surgery if he did not have dementia?
• Why does the dementia rule him out as a suitable candidate for surgery?
• Would he be having the surgery if he did not have dementia?
• Why does the dementia rule him out as a suitable candidate for surgery?
bashski, would your wife be able to do the exercises prescribed after the surgery to rehabilitate? If you are confident that she would, because she can understand instructions and is generally compliant, then you could go back and argue her case. If she wouldn’t be able to rehabilitate properly because of her dementia then I can see why the the surgeon would be reluctant to operate.
On the anaesthesia worsening dementia point, I feel that that’s for you and your wife to weigh up the risk of this against the possible benefit of your wife’s mobility being improved and the likely benefit of her not suffering pain any more.
On the anaesthesia worsening dementia point, I feel that that’s for you and your wife to weigh up the risk of this against the possible benefit of your wife’s mobility being improved and the likely benefit of her not suffering pain any more.
Exactly my point. To send a letter based on a vascular nurse's opinion is totally unacceptable. We have not been offered a consultant's appointment to discuss the situation nor have we had any results of his pre-op assessment. I totally accept that the NHS staff are working under immense pressure and have always had the greatest respect for them and been completely impressed and grateful for the care and treatment we have received in the past which has been faultless. However this situation is questionable on so many levels and I cannot accept this
as it feels so wrong and dismissive with no full explanation.
I
as it feels so wrong and dismissive with no full explanation.
Exactly thank you.
Hi @Lilyanna, in theory an aneurism can affect blood flow to the brain but if it is only just big enough to need surgery I would expect any change to be minimal. Refusal to do an operation due to the fact he has cognitive impairment and it may not improve it is like comparing oranges to apples. One should not depend on the other.
Complain to PALS and anyone else you can think of - this is clear disability discrimination and possibly age discrimination. Both of these are illegal in the uk.
Complain to PALS and anyone else you can think of - this is clear disability discrimination and possibly age discrimination. Both of these are illegal in the uk.
Thank you. At the moment he has not been diagnosed with dementia. They are basing their decision on a vascular nurse's judgement that in her opinion his cognitive function has deteriorated when he attends for his aneurysm monitoring which is for 15 minutes every three months.
