Not having medical procedures in old age

[Orangesandlemons77]

I should possibly post this in AIBU, but thought those here might understand what I'm on about.

I'm in the age of having parents and neighbours getting old and seeing a pattern emerge.

They seem to get treatments / surgery to prolong their life but this seems to not bring a good quality of life.

For example, one has vascular dementia, but recently had a heart problem and got a pacemaker fitted. If this had not happened I think they would have died of heart failure, but now they might go on for years getting slowly worse mentally. How they decide to turn it off I don't know.

Another similarly has the same dementia but had a heart valve replacement surgery and that os now keeping them going.

My elderly dad has mixed dementia and recently suffered with pneumonia which used to be called the 'old mans friend' he was treated with antibiotics and now recovered but struggling with UTIs and confusion.

I had genetic testing and have a copy of the APOE4 gene meaning I have a slightly higher risk of alzheimers and maybe this is focusing me on this as well.

I am considering doing an advance statement stating no life saving treatments / surgery after say 75. I'm also doing a PoA as well. I already have a problem with the bowel which can result in obstruction (adhesions) so that might see me off before the dementia kicks in.

Sorry if this sounds morbid but I wondered if this resonates with anyone else.

When it comes to people with no capacity and poor quality of life, there is often nobody who has both the understanding and the guts to say “enough”. Family don’t understand or feel they have to go with the recommendations for treatment or are a too heartbroken to make a decision, and there is no medic with the holistic insight of the patient or the time or the guts to say “you have the opportunity to allow your mum a natural death”.

I’m also the owner of a pretty strong advance decision.

It's ridiculous sometimes

Thankfully the hospital were sensible when my mum had sepsis and stopped antibiotics
Then I sat watching her die like why does she have to go through the dying process when we wouldn't do this to an animal?
She's not going to recover, she's actively dying but yet it's illegal to help?

That's really sad about the work colleague with the 99 year old mother.

I hadn't heard of an advance directive before this thread but I'm definitely going to put one in place for myself. No way would I want to endure what this elderly mother is having to endure at the age of 99.

I actually think a lot of intervention in the elderly can shorten their lifespan rather than prolonging.

mil and fil both had serious conditions- one had a brain tumour, the other had an aortic aneurysm. Both opted to manage conservatively with medication and monitoring. Both are still here 15 years later and in good health (excepting those issues) in their 80/90’s.

on the other hand my sisters fil had a “lesion” on his liver. The NHS advised conservative management, the logic being he was in very good health, asymptomatic, and chances were if it was cancer he’d be unwell. His family insisted the nhs were choosing not to treat and took him private, where they diagnosed cancer without a biopsy and started chemo. He went from a fit and well man to dead from the chemo in 6 months.

sometimes the “cure” isn’t.

I think there are two issues here: deciding whether or not to have treatment before you get unwell and secondly prolonging life no matter what.

My thinking on the first is that I'd rather die of pneumonia, COVID, a heart attack etc in my 70s whilst fit and well and full of life BEFORE I might develop dementia. I'd rather die without having my life go downhill.

On the second issue, the medical profession seems to be obsessed with keeping people alive even when there is no quality of life. For example, CPR on or chemotherapy for someone with dementia. I believe this is wrong, not least that the treatment can worsen the dementia and cause the person more distress.

I had a very frank discussion with my mums Doctor and we have a 'Respect' Plan in place.
She is 76, with Alzheimer's, advanced COPD and weighs around 5.7 stone.
We have agreed that no lifesaving measures are to be out in place. No hospital stay unless for a broken bone. - I know being in hospital would terrify and confuse her.
She has on her paperwork, that she only wants home treatment, and to be allowed to die at home if possible.

There is no point in massive treatments. Its not going to save her, or improve her quality of life, it could only extend it and push her further down in terms of her Alzheimer's.
I have tortured myself by thinking i am the worst person in the world to hope something takes her out quickly.

She is dying. I just hope it happens soon so she dies still being 'mum' Still recognizing the people who love her, knowing how much we care. I dont want to have to watch everything being taken from her for her to die Scared in a strange place without feeling the comfort of the love from people she recognizes. I have come to terms that if that makes me a bad person, then so be it.

Chris Witty has talked about this before. I certainly saw the hospital throw more and more at my Mum. Six weeks before she died she was moved to cottage hospital (still big but no A and E) and they put her in a private room and I suspect at that point they knew she was going to die. I knew too but thought she has another 3 months based on nothing logical. She had some many tests and treatment.

My Dad has sensibly had a DNR put in place and had declined certain medication which would prolong his life but resulted in a poor waulity of life for him.

You’re not the worst person at all for hoping something takes your mum out quickly.

My mum was diagnosed with lung cancer and died very soon afterwards from a medical emergency after a colonoscopy (they thought she might also have bowel cancer). I was so relieved when I was told the news that she had died! I had been completely dreading her being in pain for months. A long lingering decline is not what we want for our loved ones.

I have found that families can be a real barrier to sensible decisions such as DNAR and what is and isn’t appropriate treatment.

You can change and update those living wills as you go along, I think it recommends it every 2 years.

I've already been under the memory clinic at 48, they have found mild global brain atrophy 'out of proportion for her age' although not dementia at present (had a PET scan which was clear)

I've done a PoA and thinking about the living will as well, but with the knowledge I can change it as I age.

Yes! they get so emotionally involved and it can become about them rather than the person themselves. I have been witness to fraught discussions with family being asked about whether to operate or not (ironically for a bowel perforation) and a relative getting angry and saying things like not to do so would be 'like sending them to dignitas!' - even when they had been told the person would only be likely to live a few mon the longer anyway due to other problems.

I have seen this happen and it's one of the reasons I am thinking of putting it in writing.

*months

It's purely anecdotal, but of the elderly people I've seen who've had operations with GA, many of them have gone on to develop dementia or various forms of confusion a year or so later. Those who've had operations with an LA haven't.

There is a link with the anaesthesia and dementia, I have seen this mentioned in dementia research. I think especially with the gene I have (APOE4) which approx 25% of us have.

It seems it is not conclusive overall, this looked useful on the link. I have had several very long abdominal surgeries and wonder if that has impacted me, cognitively.

https://www.healthline.com/health/dementia/anesthesia-and-dementia#dementia-risk

I may be further along with this than many of you as I am in my 60s and DM is in her 90s. She has had an excellent quality of life, some health issues requiring medication but, until the last 5 years, she was very good. Over the last few years she has become frail, had several falls and health issues requiring some intervention.
DM has been very clear that she does not wish her life to be extended if the quality of it would be impaired so she will, for example, accept antibiotics for a simple infection which could be cleared with no lasting effects but she does not want any operations or treatments which would reduce her quality of life, need recovery time, etc and which could have ongoing effects. She has also declined any further investigations as she says there is no point in wasting time and resources to diagnose something you would not accept treatment for.
I accept her views and have agreed that I will observe her wishes, she has also spoken with her GP who has documented this alongside her DNR

That all sounds sensible, thanks for replying

I hear you OP.
My mother-in-law is being kept alive by medication that has horrendous side effects requiring lots of other medications. She is on heavy pain relief. She is housebound. Her quality of life is practically nonexistent and her children are providing 24-7 care to support her to stay at home, severely impacting their quality of life, their family and work lives and causing a great deal of stress and anxiety. This may continue for years, in theory. It's madness imo.

Yes thinking about others is so important, I suppose with having a living will it means family don't have to make decisions on your behalf when they are unaware (or unwilling / unable) to discuss these.

Whether making the decision to have everything going, or refuse treatments at least no-one can get it 'wrong'. I saw this problem with the uncle / bowel surgery situation mentioned, family all horrified and discussing what to do, while the surgeon was waiting (they chose not to have the surgery in the end and he passed away a few days later)

In my experience 85 is the point where things start going downhill. I know several 80 years olds who could easily pass for 10 years younger, and are very active. I've certainly never noticed a striking decline between 75 and 85 in anyone I know.

I do think prolonging the life of someone with severe dementia is cruel, but not everyone develops dementia at an early and the majority of 75 year old people around here are still more than capable of enjoying life.

I have a very similar view to you. But I have questions.
If you refuse treatment after a heart attack or stroke, or refuse stents or pacemakers, do you just have a lot more symptoms and disability rather than dying? If you refuse antibiotics for flu, are you just going to end up needing hospital care? My MIL recently fell due to an infection in her finger which made her arm blow up hugely. If she had refused antibiotics she would have needed help with self care, had a lot more pain, but not the 'sooner death' we are all imagining when we talk about this issue?
I know Shipman ruined it, but I would prefer a careful management of death by doctors without too much paperwork or discussion but with the aim of dignity and reduced suffering.

This is very true. It's the same with young people who really believe they would rather die than be paralyzed but if they are actually paralyzed realize that they do want to live.

My MIL had a hip operation when she was 90 something. She was in pain and apparently hip operations have a very high success rate

I think that if you look at the compassion in dying website it asks for specific situations within its living wills, so this would be covered there? So you might not just refuse antibiotics for everything but in specific circumstances.

I suppose with things like the heart treatments you would decide on a case by case basis. In discussion with the doctors.

My mother had a hip replacement at 80. The anaesthetic gave her odd delusions which she reported with glee, but which I am almost convinced tipped her over into dementia (of which she had shown absolutely no sign previously). She recovered well but, having not exactly been active before the operation, she did no physical rehabilitation afterwards and simply resumed her wheelchair bound life despite the new hip. A friend's mother (who is in her 90's) is being told she needs a hip replacement, but I think they're delaying the operation in the hopes that she dies naturally before her name comes up on the list.

I know that not having a pacemaker when you need one can condemn you to sitting looking at the walls until you die. Step mum is in her 90s and went from that to going out with friends to cafe/garden centres. Yes she has some cognitive decline, forgetfulness etc, but she's in her 90s, it is normal.

Why should she have to just sit there waiting to die, not being a nuisance.

Trouble is there is a fine line between living and feeling alive. I'd rather her last few years were comfortable and happy - even if she develops dementia. (Some cognitive decline with aging is normal)

MIL, on the other hand, has late stage vascular dementia and is in a nursing home bed 24/7, nothing can be done to improve her quality of life, she will gradually shut down function until she dies - or, quite likely, aspirates food and contracts pneumonia. She has a variety of non intervention directions. She would not, for instance, have a pacemaker fitted.