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.

Clinicians can’t show bias by declining to treat a condition due to age / dementia etc. as this would be seen as health care rationing etc. However I do think people, that’s families and the elderly, do need to really understand the quality versus quantity of life debate. Having watched elderly relatives and friends die slowly from dementia and or cancer we do need to be braver about the quality versus quantity debate. What is the value in extending life for a number of years in the knowledge the individual won’t get the benefit ? And the good news being we can “cure” your heart problem but your dementia will get worse or we can give you more chemo / radiotherapy but your cancer can’t be cured - so when is the point to stop the treatment, stop the awful side effects and let nature take it course with palliative care. The reality is that every individual and family circumstance is different and there is no clear cut answer for some the quantity of life is all important to be here as long as possible and for another individual it’s the quality of life which is more important - no easy answer

Good luck @BestIsWest , whatever happens. Tough one.

My DM had a recent health crisis that landed her in A&E, the Surgeon rung me before to ask if she should have the procedure, I had no idea I could refuse. Afterwards during her recovery and subsequent treatment they have seen just how debilitated she is with dementia and we have gone through her best interests and DNR. If a similar situation arises even the doctors think it would be better to just let things run their natural course and give her pain medication. The problem is if you ask her carers at the nursing home they think she has quality of life, I know my Mum and none of the things she enjoyed are available to her anymore, she is in a constant state of anxiety and confusion and frequently screams and cries. I now think I massively let her down in agreeing to her having this life saving operation and feel enormous guilt.

@SinisterBumFacedCat I know that guilt. If i hadn't called an ambulance my mum woukd have avoided the last 4 miserable years and would have died in her own bed, but i wasnt strong enough and by that point she was slipping in the bathroom on her own wee.

It wasn't in fact your decision to treat, it was the medical team's. A good discussion with her GP would be worth having - I take a morning off work to wait at the home when I need to have those talks.

It's really difficult though when asked to make life saving decisions on the spur of the moment like that. I mean if saying no to a surgery or procedure and they died, how would we feel then, guilty about that I suppose. Let's try to be kind to ourselves.

It’s so difficult isn’t it, I saw my Mum die of dementia over 4 years and I’m petrified I’ll be the same (her Dad also died of dementia). But the older I get the more I want to prolong my life and the thought of making a decision to end it also fills me with dread. Although if I do have dementia it’s likely won’t be able to make it.

but my Dad is well into his 70s now and having a new ankle and it’ll likely be the making of his new healthy life as mentally he’s fine.

’ doing everything we can’ : to achieve what?

It’s a very difficult situation, and everyone has their own set of values, beliefs, experiences. And their relationship with the dying person. My MIL finally started to properly decline with a chest infection, after nearly 5 years of just wasting away in a nursing home - completely immobile, doubly incontinent, unable to speak or communicate, dementia, Parkinson’s, osteoporosis. And my SIL was still talking about antibiotics, trying to ‘build her up’ enough for treatment. I kept my thoughts to myself mostly but i know she was trying to extend my MILs crappy existence so that she didn’t have to deal with the pain of her death. or - like you say @Orangesandlemons77 because she would feel guilty and not ‘doing everything’. Again, my question is what are we trying to achieve by ‘doing everything’?

Re-normalising a natural death. What a lovely idea. Sadly, the chance to die a natural death is denied to many these days. It’s hard to pinpoint when it changes from ‘life saving medical treatments’ to ‘unnaturally extending life just because we can / don’t want to deal with death’.

Quite honestly I have a different view from most. Having seen both parents die much later in life and in one case really suffering its not good. I found that hospitals do throw everything at an old person and my DM was in hospital for weeks at a time although with other very elderly people. The ward was truly horrifying. Screaming and shouting and Mum didnt get any sleep.

It’s hard to pinpoint when it changes from ‘life saving medical treatments’ to ‘unnaturally extending life just because we can / don’t want to deal with death’.

I know, I think this is behind it all and the 'guilt' of not 'doing enough'

When my dad was in hospital the doctor said to my mum and I , if he has a heart attack or similar we aren’t doing anything to save him, it’s not like you see on the tv, we’d be breaking his ribs. So she was quite clear! Not exact words but the “ it’s not like the tv” made me laugh (not at the time!). She was fab.

This is such a tough and emotive issue. I think so many people (including myself) have a problem with death as a concept. It is hard to contemplate it ever being a good thing but objectively I know that it is often better than the suffering and pain that can be caused from prolonging a life unnecessarily.

I think perhaps as a society we need to shift our view about how things end. I see it with death but also divorce where it is automatically assumed to be a tragedy when in fact it can be the natural and inevitable conclusion of a successful life/relationship. Something doesn't need to last forever to be successful and wonderful. A good death can be part of an excellent life.

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”.

Are medics allowed to say this? I wonder what they are taught to say at med school, and what the hospitals legal department would allow them to say 🤷‍♀️

To be fair, when an elderly relative was admitted to resus, one of the first things medics did was take the time to walk us all through a DNAR.

it was done well and sensitively, and it was clearly part of this a&e’s protocol.

Weeeeeellll.. the medic is normally speaking to complete strangers when they talk to family & friends. F&f could be waiting shamelessly for the inheritance or prepared to donate their own organs. They could be the epitome of reason or prepared to see wickedness in anything and everything the doctors say. They just. Don't. Know. So circumspection is always always the way to go.

And, the trouble is, F&f can be blindsided if they're rung up and told, "X is in the hospital, do you consent to doing Y?" As a PP described. It may be 3am. You may lack the full context. Or any context. And our default programming is to say, "Yes, doctor, of course, doctor." They train for years, if not decades, and generally we hope they know what they're doing!

Even if it's NOT your first go around in this sort of situation, it takes a heck of a lot of presence of mind, plus a good chunk of courage, to go,
"Well if you're ringing me up to ask me, that suggests we should discuss the wider quality of life implications...".

It's not easy to sound each other out so that neither one gets the impression the other just wants the patient bumped off, but still frankly discuss whether NOT having the treatment is the least worst option. It's rare that either of you are sure. Doctors will have seen both miraculous recoveries and dreadful, terminal deteriorations. Family may not know the medicine but they know the patient, but might be led astray by their own experiences and prejudices.

And there's no denying that "will a death from this current infection be worse or better than from the underlying terminal cancer they also have?" is a hard question to ask openly! Particularly when the answer may be, "Depends if the cancer causes a blood clot which bumps him off before either of those..."!

It's just so so delicate.