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 difficult question really.

When my dad was in his late 80s he had several chest infections and was hospitalised. I was really grateful that his GP took him seriously, called an ambulance etc and that the hospital treated him. He then went on to develop vascular dementia with hallucinations and was bed bound. That followed with 6 months of him lying in a care home and I think he would have rather have gone to pneumonia the previous winter. I was devastated at what happened to him but would have been equally devastated at the time if they hadn't given him the antibiotics for his chest infection and we had lost him to pneumonia as at that time I wouldn't have known what the future held.

I used compassion in dying to do an advanced directive when I was 38
The doctor did give me a bit of side eye but I said look if I get hit by a bus tomorrow it's no good not having something in place

Mine is no life saving or extending treatment if I have dementia or a massive brain injury basically. No antibiotics etc

That's awful - about the feeding tube I mean. I hate that that can happen even with an advanced directive, that feels really violating. When my grandmother had lost all interest in food and drink (I'm not sure she actually recognised what food was) and was absolutely skeletal, care staff would consider it was a "good" thing when they got a certain amount of fortified drinks/supplements down her. Even then I remember thinking: "is it? really? to what end?" I suppose you can't just let people starve, but I've since learned from my doctor friend that when people are approaching end of life, they don't really feel hunger and thirst in the same way. We might imagine they're very hungry or thirsty because we would be, but her patients have capacity and they can tell staff they're comfortable.

I'm very much in agreement with you @Orangesandlemons77 - but appreciate it is very different between individuals. I think this view will get more common as more people see loved parents struggling through years of dementia or frailty and decide they'd rather have a slightly shorter life in better health

I definitely want to have an advanced directive in place as things are. It might be different if I were one of those perky people in super good health, but existing skeletal issues that will get worse as I get older mean I will not be one of those people running marathons and 80s or whatever; nor am I likely to enjoy a super comfortable retirement with lots of holidays. Honestly, from all I've observed I don't feel like it's worth trying to live past mid 80s for me. Would never demand the same of anyone else, but for me I can't see an awful lot that would make life fabulously worthwhile past that point unless you are very fortunate with wealth and health.

My mum was the opposite. A year ago she was diagnosed with cancer and chorea. She refused all tests and treatments, wrote an advance statement to this effect, and died this January aged 81.

FIL at 84 was diagnosed with three lots of cancer last year. One stage 4. He was offered and started chemo, giving IMO, complete false hope to him, his elderly wife and adult children. I'm a nurse and suspected it was futile and indeed he passed away several months later after to-ing and fro-ing for numerous scans, appointments, admissions etc.
I'm of the firm belief that many people are living too long with pretty poor quality of life. I once spoke to an oncologist who said he would never put his older family members through the treatments that some family members expect. The patient themself IME, is often far more philosophical but get swept along and 'don't want to let people down'.

I once spoke to an oncologist who said he would never put his older family members through the treatments that some family members expect.

Yes- I too have heard that doctors will often say the same. I have read a couple of books on this topic, one was On being mortal by Atul Gawande and the other by the Call the Midwife writer Jennifer Worth, In the Midst of Life. Also With the end in mind, how to live and die well by Kathryn Mannix.

I would recommend all of those. I have a health problem with recurrent bowel obstructions from adhesions / previous surgery and have had several life saving surgeries for these and this would be something I would consider as well in future, maybe that has focused my mind a bit, it gives you a bit of perspective when you have had your life saved etc. It's not a pleasant thing to live with, but can be manageable, (might need a NG tube / liquid diet if it gets worse, just now can manage with soft foods etc but get some chronic pain)

Anyway enough about me, it is good to talk here as not so easy with family at times.

I think the point is, as long as you have capacity, you can still get the intervention. If you find yourself in better shape than you thought at 80, you may decide to go ahead and have treatment for cancer, but you may feel that if you had dementia at 80, you wouldn't want intervention; or you might not have dementia but have other health problems and mobility issues that are only going to get worse and be adamant you don't want your life prolonged.

Dementia in itself isn’t a reason not to have life saving treatments or surgery. There’s a huge difference between end stage dementia and the earlier stages, where many people still have a decent quality of life. I find it strange that someone would refuse minor surgery, such as a pacemaker just because they have a dementia diagnosis.
I personally wouldn’t be saying no to life saving surgery if I had mild dementia, still lived independently at home, was still able to enjoy hobbies etc just because in 10 years time I may be in a care home, Incontinent, unable to feed myself or recognise family . Yes, id have an advanced care plan in place for that ‘end stage’ but I wouldn’t let it dictate my life in the years prior to that situation arising.

If your teen self had been asked whether life was worthwhile at your current age op (50 ish?) I'm guessing you'd have said no, you'd rather die than be your current age.

I think you can give older people the dignity of saying if they want to die or not. If the choice is uncomfortable intervention or certain death, they might choose the intervention. It's between them and the doctor, really. So long as the reality of the treatment and prognosis is explained.

Having cared for people with dementia both personally and professionally, I do not want to spend one minute longer than necessary with dementia. It’s such a cruel disease and it’s inevitable that it gets worse. The extreme distress and other upsetting side effects like regular falls, forgetting the most basic of functions etc can happen long before it gets to end stage.

It can go incredibly fast too. It’s often at the moderate stage before you realise that a loved one has it. It’s often very deceptive. I have known a few with “contented dementia” that is they weren’t actively distressed but they still weren’t the person that they used to be and their quality of life had diminished.

Each to their own but having seen the extreme distress that it can cause, I think that actively prolonging a life with dementia with surgery causes far more harm than good.

@Haroldwilson no I would not have seen 50 as a terribly old age as a teenager nor did i think my life would be over before then. However, I have now in my 50s seen a lot more death than I had at that time. My husband, suddenly and tragically, friends of course, my grandparents, multiple aunts and uncles, my dad, my godmother, my mother in law, some cousins. I have worked in palliative care, in oncology, and in 'front door' care at a major hospital. I currently work in post-stroke community care. As a result, I've seen a lot of people in a lot of different states, though I must say that the nature of my job means I'm not often at the actual deathbed.

My perspective is that I want to die with regrets. It seems to me that doctors working in care of the elderly too often have an appallingly skewed view of what constitutes an acceptable quality of life. It's quite possible that the majority of people in this country agree with them. That's fine but I want to go long before I reach the point where showing a faint sign of recognising a piece of music, or showing a preference in yogurt flavours, is the top experience of my day. The single best thing my mum did was tell me her own view of what quality of life represented to her - the ability to get around independently and make her own decisions. I wish with all my heart she had taken the available legal routes to make that official, but when I am fighting for her against the invasive treatments offered, at least I know what she wanted. And her appalling experience has taught me what I can do to prevent it for myself. In the end I can't really choose- I dont think I have the courage to end my own life. But I have done what I can to protect myself from other people's 'horror' at my own choices.

Hip replacements are quite a big operation needing physio soon after and for a while after.

There is risk of DVT with anyone, but someone with a sedentary lifestyle increases the risk.

Things like pacemakers and subcutaneous procedures can be done quickly with only a small incision that only need a couple of stiches, if that.

It's a balancing act of what benefit there is to the person taking in to account medical history and lifestyle.

My late DF was similar, in and out of hospital and didn't have a great quality of life. A new valve later and he was firing on all cylinders again. If he hadn't had the procedure done he possibly could have carried on the way he was for several years, which wouldn't have been enjoyable for him, and caused great worry to me.

Where do people get these ridiculous notions that 75 is too old to want to enjoy life? My neighbour is 76 and his wife not much younger and they still work full time in their own business, which involves physical labour. My friend is 80 and we go walking several evenings a week, for an hour to an hour and a half. Some of my friends are 71/72 and show no signs of slowing down.

I agree with you @Orangesandlemons77

My in laws are in their late 80s and quite frankly they are miserable. My MIL is in a wheelchair and can't do anything for herself. My FIL has early dementia.

They are both constantly going to the doctors and then the hospital for procedures and they definitely have been kept alive by a huge amount of NHS intervention. This week for example my MIL has 2 hospital appointments, one is for a scan but she doesn't know why she's having a scan.

My poor SIL is the one living closest to them and she is at her wits end with having to be their main support system and keep driving them to appointments and sorting things out for them at the same time as holding down her job. In my heart, and all their children feel the same way, we wonder why the NHS is so determined to keep them alive when they have no quality of life.

I agree with this. A pacemaker isn't necessarily life saving but my goodness it can be life enhancing. Yes my 91 year old stepmum would probably have died before now if she hadn't had it done, but she regained her pep... she is out and about, not sat in a chair looking at telly.

Before the (minor) op, she wanted to die. Now she doesn't.

Haven't read the full thread but is be surprised if it wasn't full of screams of ageism and that people are little better than murders wanting old people dead.
I don't think there's anything you can do about this to help this generation, the only thing we can do is make sure this treatment doesn't happen to us. Make sure family all know you DO NOT want this torture and get paperwork in place to prevent it.

It's not that 75 is too old for anything at all. It's just that the decline between 75 and 85 is really striking. 75 is a point at which you might easily start having significant health issues which could lead to death if not treated. An age at which perhaps it starts to be harder to rehabilitate after surgery, radiotherapy, fractures etc.

Barbara Ehrenreich wrote about being 'old enough to die' at 70 and that she was refusing major intervention from that point (she was already a breast cancer survivor). She died at 81, six days after a stroke. Good on her.

It's because of my genetic risk for dementia, it seems to start earlier.

My grandmother developed vascular dementia in her 70s. She has always been adamantly against any operations but when she broke her hip, her son pushed for an operation.
It was absolutely awful- she had a really bad response to the aneasthetic and it hastened her cognitive decline. Puls she was stuck in a hospital ward, without her regular carers and it was very busy which made her very anxious and aggressive.
My work colleague was still dragging her 99 year old mother to heart scans, even though her skin was like tissue paper and the blood tests were causing her real distress.

@NattyTurtle59 my mum was dead at 72 from early onset dementia
Hence why I haven't waited until 75 to do an advanced directive
It's not just the dementia, I've seen people my age with brain injuries that I don't want to survive

I don't think 75, is too old to want to enjoy life but in my experience the next 10-15 years are often very cruel for people of this age and there is often a steep decline in health looming in the not too distant future. I have seen it time and time again where a relatively fit and healthy 75 year old becomes an elderly, confused and unwell 85 year old with an extremely poor quality of life. This often isn't helped by the fact that so many people lose their partners and friends over this time too and begin to struggle to live independently.

There literally comes a point where it is diminishing returns and some elderly people simply don't believe that life is worth living anymore when there is very little to look forward to and a lot to fear. My grandma is at this point and although I love her, I can totally understand why she feels the way she does and I imagine I would feel the same in her position. It wouldn't be fair to encourage her to endure medical procedures to prolong a life that she feels has pretty much already been successfully completed. Who would benefit from this? There should be a greater acceptance in this country that death isn't always the worst option for everyone all of the time.

I think 75 is a bit early to give up on yourself! I can tell you the seventies are okay unless you suffer with ill health but come the eighties then things tend to go down hill. However if adjustments and expectations are made there is no reason to give up. However, once independence is totally lost then I don’t want to be here. I am 83.

I too have an advance directive in place. I have no children. So I would like the decisions made to be largely my own. I know that DH is unlikely to be able to refuse treatment on my behalf.

Like others, advance directive says no treatment if I have recognised dementia or suffer a brain injury; no anti-biotics for respiratory infections, and no cancer treatments unless I am fully informed and able to consent.

In my own head 75 is a good cut-off for things such as chemo/ invasive surgery etc. I have had chemo before; it’s debilitating and recovery is a long term thing.
Quality over quantity.