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.

It's a very personal thing. I have seen both sides - medics diligently treating someone in his mid 80s whose time had obviously come, but also, recently, someone who had a heart attack (also mid 80s) and was saved by prompt use of a defib... as the heart attack had happened in his spin class.

The first man still had capacity and, despite having a somewhat alarming enthusiasm for assisted suicide, when it came to it, he made not one demand for the doctors to withdraw treatment.
So how people feel when their health fails can sometimes not be how they expected.

Always good to have a think and make your wishes clear!

It's very common that older people who might once have said 'I would rather go than linger on in poor health' tend to change their minds. The problem is that it's dubious to argue that they aren't allowed to change their mind.

Hi OP

I don’t know what the medical ethics are on which these types of decisions are based. I presume if the patient can make an informed choice that’s what the doctors go with. Where capacity is in doubt, do the family’s wishes influence the decision?

The surgical side probably look at whether any op will be successful in prolonging life, and will do it if the answer is yes, and the patient has not expressly declined.

You’ve made me think now! My mum has many times said she doesn’t want life-prolonging treatment in a case where she is not able to advocate for herself (stroke/dementia) but doesn’t have, as far as I know, anything in writing. I wonder how I would fare if that were the situation? Would I be listened to if I had to vocalise her wishes?

I agree with @Holesintheground.

My MIL in her middle aged, used to refer to elderly people who were clearly losing their faculties, saying to my DH "if I get like that, promise me you'll give me a pill". This happened regularly

Of course, when she did get "like that", she'd stopped saying it, LOL.

I definitely don't want any life prolonging treatments should I be diagnosed with dementia. My grandmother suffered horribly because of it, and they kept patching her up.

My other grandmother is in her late eighties and recently suffered from a heart attack. They could not find proof of her DNR documentation in time so the paramedics and the doctor treated her. She's had a pacemaker fitted and is as good as she was. She is a bit forgetful at times but not like my other grandmother was.

For me the line would probably be the point where I stop recognising my relatives.

I guess it is a matter of making these decisions in writing before any cognitive decline sets in as then they could think you don't have capacity.

I have seen something on the website Compassion in Dying about this I will find a link

compassionindying.org.uk/how-we-can-help/living-will-advance-decision/

Young people have a massive fear of getting old, and think they couldn’t live the life of an elderly person with the poor health that often comes with age.

By middle age, people are at peak unhappiness and the age related health issues are starting to creep in. They’re also watching their elderly parents pass away and the FFS I’m now eldest generation in family and ergo the next to die.

So the fear you’ve had from youth of getting old plus the realisation you are now aging often makes middle aged people think they can’t go through with it.

But as a pp said, when you get there, to being elderly you often find life isn’t as bad as you feared and it’s worth fighting for the good things you still have and feel.

It's not so much a fear of dying or feeling of not being able to 'go through with it'- I don't fear death, more my eyes have been opened from seeing others end of life stages and thinking practically about the future.

I think it is tricky. You can live years with heart failure and have a terrible quality of life. It isn't just a case of refusing a treatment and being dead tomorrow. I would say in general the NHS doesn't overly treat / investigate those with dementia, but yes, it is worth while recording your wishes in advance.

@Orangesandlemons77

Thanks for the link. Something to look into.

You talk a lot of sense, OP. I would always prioritise my quality of life over length.

I've written a fairly brutal Advanced Refusal of Treatment and it's in my GP notes. I've started the Lasting Power of Attorney process for myself, giving POA to dp and ds. I'm 55 and I'm.not even convinced I would want life-prolonging treatment now, never mind in 20-30 years. The tricky thing is when treatment that manages symptoms also prolongs life.

Frankly I have a fairly bleak view of how things happen when the crap actually hits the fan. I've seen someone with advanced dementia and a long-standing advanced directive specifically refusing life prolonging treatment, who had a feeding tube up their nose. I've had a response from a doctor when both I and a close relative were questioning a form of treatment, and the response was 'this is what we do in these cases'. Not exactly personalised treatment.

I don't think my mum is actively suffering but I do know that the life she has been living for three years is the opposite of what she wanted. But she didn't write any of it down. No POA for health. She got the default treatment, ameliorated by our advocacy but our powers was so limited.

It depends on quality if life doesn't it. My mother had a heart valve replaced last year. She's 88 now. As she did then, she still walks a mile up to the village and back most days, cooks a roast dinner, plays bridge and has an active social life with her 80 year old husband.

She could pass for 75, still goes to dinner dances and maintains a wardrobe most people would envy.

@Orangesandlemons77 I'm 64, still working, very happy and have a wonderful life. I think cancer treatment depends on one's quality of life. MIl has parkinson's dementia but still has capacity. She had some cancer investigations last week and I'm pretty sure she and DH, who has PoA, will decline anything invasive, providing she can remain pain free or relatively so.

Not unless you have PoA

It's not at all simple. On the face of it, I have my every need catered for. I have financial security too, thanks to a good pension.

What I don't have is autonomy. I haven't been outside my house since before xmas. I haven't had a visitor (outside my adult child and their partner who live with me) since November.

My adult child is well aware of my desire to just go. Whatever way is mine. But medics want to keep me alive with drugs. And the really odd thing is, I comply.

Why I comply, I cannot figure. Maybe it's because I don't want to be the reason my child (adult though they are) will be sad, and I don't want to be the cause of their sadness. Though, inevitably, I will be.

@user1471453601

You put that very succinctly.

I’m glad you can “visit” on MN. All human life is here!

Thank you. Whenever I see posts in the future asking why people like me (old, no young children ect) post on her, I'll think of you 😍.

Until my step mum - 92 - had her pacemaker fitted last year, she cost the nhs a fortune for 2 years, in and out of hospital, bed blocking for weeks each time. Now she pootles along, yes she has some cognitive decline, but sometimes doing something is better than doing nothing. She wasn't actively dying, just too ill and uncomfortable to not be in hospital... for a bit... regularly...

I'm making an advanced decision to take effect if I ever become unable to make or communicate decisions about my health and wellbeing. I've met enough people who were resuscitated and unhappy to have been "brought back."

(Don't get me wrong, I also know people who were thrilled to have a second chance at life.)

I'm only in my 40s, but I don't want money spent to keep me alive in discomfort.

The “fear of going through it” I meant as a reference to going through old age and the gradual loss of health, mobility and mental acuity. The decades long slow degradation. Not death itself. I realise I wasn’t 100% clear the fear isn’t of death but of the side effects of aging.

@user1471453601

But being older can be positive. Older people have experienced an awful lot and can give advice based on that. Keep on posting!

Exactly, the pacemaker has massively improved her quality of life and that’s why I think we shouldn’t be judging or rationing medical procedures based on perceptions of being too old to be worth it or current levels of ill health that can be or have a good chance of being improved by medical intervention.

I think the default should be to get the person the best medical care unless they refuse it.

If someone has the capacity to refuse, then there isn't any issue because they can make an informed choice about having medical intervention to prolong life.

It's when a person doesn't have the capacity to decide that's worrying because it's harder to tell if it's something that they would want. Some procedures might improve quality of life and others might just make things feel worse.

Same. I have an advanced directive. She didn't, and lost capacity pretty rapidly, and so began a horrible charade of rounds of IV antibiotics every time a woman of 80 with advanced dementia and two unhealing broken hips from osteoperosis got an infection which was, naturally, a lot. She must have weighed 5st by the end. Surely that's not what people go to medical school for. Surely that's not the aim of medicine. I have a lot of reservations about assisted dying, but I'm very much in favour of re-normalizing natural death. My friend who is a doctor feels the same - she's very on the fence about assisted dying and thinks it could go very wrong very quickly, but also thinks it would be much less of an urgent question if we just....pulled back a bit as a matter of policy. Stop doing so much to people who are at the end of human life expectancy. There might be certain circumstances where a major intervention is warranted, but not as a matter of course. Allowing natural death is also a lot less ethically fraught from the doctors perspective than assisting someone to die.

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.

Pacemakers are not implanted for heart failure, they control the rhythm of the heart and this can improve blood flow so lessen the dementia.

They don't get turned off, the battery runs down and they can be programmed to extend the battery.

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

I would guess this was a transcatheter aortic valve replacement, it is not an operation it is a medical procedure. A cardiologist makes a small incision, usually in the thigh and uses a catheter to insert an artificial valve.

It can considerably improve quality of life.