To think that we need to have an honest conversation about euthanasia and care costs

[Noras]

So there are some interesting stats published by the Gov about the cost of cares the end of life and whatever way you look at it, it’s expensive. Obviously the most expensive is hospital care at about £400 to £500 per day but also care in care homes is high.Most of that could be avoided with an injection.

I have watched both my parents die and I have been left traumatised by it. My mother died from starving to death due to dementia in a non nursing bed with no pay relief other than paracetamol. She was clutching the sheets and morning for 14 days. My father died of the most gruesome cancer. We nursed him at home but we still had one 24 hour carer at the end paid for by CHC ( he was plus 2 for eg the commode and washing hence we still did it).

Whilst my parents were dying I could not bear to let them go but now after several years I think ‘What on Earth was that?’ With the benefit of hindsight I regret every mouthful of food that I fed my mother. She did not even know who I was and was in a different World but yet she was my beautiful mother.

I regret every time that I carefully measured morphine for my dad because I did not want to give him an overdose

I am haunted by the prospect of getting dementia. I am scared sick of cancer and dying from it as the pain meds never kept uo with the pain. When we just had the pain patches they were always too weak and we were always behind the race to keep up with the pain. When we got the end of life kit, as a relative I was always too scared to give ( I think ) enough morphine to top up the pain patches so my dad would he in agony. I could not bear to let my dad go - it was so painful,

So this is the question; Do we need to grow up and really think about euthanasia?

Over two years of my life were consumed by the impending death of my parents ( I still visited and cared for my mum in a care home despite it costing my dad several hundred pounds weekly as I wanted to care for her).

There is a whole field on medical ethics and medics, lawyers and policy makers who do have these discussions day in and day out. The conversation is being had. And yes, it is good to discuss in wider forums such as this.

However, you cannot assume the trauma you felt looking after your loved ones is or will be perceived by others in the same way. I am sure you can understand that. Some family members see it differently, as a Service. Some family cultures see it differently. All the more reason why these discussions need to happen devoid of financial consequence and with sanctity of life at the centre.

And I speak as a medic who has looked after 100s of ill/end of life elderly people with and without DNRs and navigated decisions in best interest with their families.

Nevertheless it is a very important conversation that needs to occur more widely as we figure out what kind of society we want to be and indeed the choices we make with new treatments that prolong length but not quality of life

If you set up a good POA you could state no force feeding or fluids in advanced dementia. That would let nature take its course quicker for some. When dhs gran died of a stroke she basically died of dehydration and infection possibly ( she felt very hot to touch) but was on a morphine driver for pain. No food, no liquid. No chance of recovering from the stroke. Some relatives wasn't happy but the choice was led by the Drs

@Noras

You very clearly have a lot of traumatic memories. I'm not sure why you think you are able to discuss assisted dying without emotion. It is very clear to me that you need to safely process what happened to you and how you experienced it before you start advocating for other people.

Well OP, the fact that you have linked this to costs of care gives some insight into one reason the whole thing is so problematic.

Excellent post and I think you and the others out there who do similar work.

I'd say it is even more important to have discussions like this with your family. It really shouldn't be a taboo subject given it is the one and only guaranteed thing we get in life.

They will have done, morphine drivers are used for this all the time.

@ATenShun, you're not really understanding what an advance decision is, by the sound of things.

This may not be so clearcut because the science is evolving. To use a popular example - Michael J Fox was diagnosed with early onset Parkinsons in his 30s and given a 10 year life expectancy. He has lived almost 30 years since. The science has evolved. We have 2 recently approved treatments for Alzheimers in the US - not perfect treatments but many more in the pipeline - currently in trials. Drugs that delay progression. Converging with that is the identification of biomarkers - tests that predict with a very high likelihood that you will develop Alzheimers 10 years before you do and similar in the works for PD.

It really isn't as simple as kill me off once I develop this disease because the diseases are heterogeneous (some people progress slowly, some fast, different senses involved etx).
The discussion could centre round advanced directives for those who are confirmed end of life with less than a few weeks to live. And even then, it is not straightforward. However, end of life care has also evolved and maybe the focus should be on the dignified death those specialists are fighting to ensure is standardised across the country

I agree that families should be encouraged to have these discussions

My understanding is that you would not get treatment should you become unwell? But if you were left vegetative due to eg a stroke but otherwise healthy. Couldn't you carry on living a long time. Nourishment wouldn't actually be withdrawn at this point, only medical intervention?

I am against both euthanasia and state assisted suicide. I think there are huge problems with both, immediately in terms of various conflicts of interest and abuse, but also long term in how it affects societies ideas about what kind of life is worthwhile.

However, part of the issue IMO is that there are huge discussions that need to be had around scenarios like this. What should care in very advanced years look like, is it really all about prolonging life?

Sometimes, as in this instance, the issue is doctors, very often in my experience it is pushed by the family, who don't really have the experience to understand what interventions will do, and can't easily accept the inevitability of the death of their loved one.

This really came home to me during COVID when many of the care homes where I live were under lockdown for over a year. So residents could not go out, and friends and relatives could not go in. When you consider that the average time spent by residents in one of these homes is 18 months, the trade off was these people were denied access to life and their loved ones for the rest of their lives, or a very significant portion of the rest of their lives. All to gain a few more months, or maybe a year, of shitty institutional life.

People get emotional, which is natural, but because they aren't looking at the real outcomes they can't make reasonable decisions.

You could be quoting me where Covid, distancing from elderly relatives and nursing homes were concerned.

I was one of those very prematurely born babies, weighing 2lbs in 1981. The cost I'd say of my care at King's College NICU was probably huge, but the real cost was priceless - to give my adoptive parents the chance to have me.

By letting me go, it would have been denying my parents the chance of fulfilling their dream. My dad even says he stood at the entrance to the hospital where the doctors were on strike and they parted like the Red Sea to allow him in when he told them he was coming to take his adopted prem baby home.

As costly as I think premature baby care is, giving up on them because it has become so expensive isn't as easy to say is the best way forward. (I'm biased, of course 😅😆)

You are able to lock a dog or cat in a crate if you so desire, you can leave it in ' prison ' to go on holiday and put a lead around its neck and pull it along .

@flapjackfairy

My FIL is confined to one room, one bed. He cannot get up and leave. The choice to put him there has been made by someone else. His wishes were not part of the decision. In effect, his bed is the same as a dog’s crate.

My FIL has no holidays. He cannot leave, he cannot ask to go away. He has no break from his day-to-day situation. His view never changes, it’s always the same patch of ceiling. My MIL goes away in holiday, she gets respite carers to look after my FIL. His situation is no different from a dog left in kennels with strangers whilst the owners go on holiday. My FIL’s dementia is its own prison.

My FIL has a permanent catheter. He cannot move from where it is tethered. It may not be around his neck but it acts like a leash and confines him to the hospital bed in the living room. He has no say in this. He gets put in a hoist and moved into a chair or his wheelchair every week whilst his bedding is changed. If MIL or the carers decide to take him out in his wheelchair he has to go. He is given no choice. His catheter bag is hooked up and taken out with him.

But yes, I agree the comparison between choosing to have a terminally ill pet put down and prolonging the life of someone with dementia is poor.

A dog is released from life when in pain or suffering, we don’t force them to endure the horrors we expect of fellow humans.

Dogs have more dignity in death than we do.

Personally I want to be able to make decisions on my own life while I am still able. I am a strong believer in quality of life over quantity. I do not want to be in a situation where I have to rely on others to change me and feed me. As far as I am concerned that should be my right to decide.

I recognise the issue about potential misuse. I believe this could be addressed in the same manner as a will and EPOA. You make a signed declaration that sets out your level of care, whilst you are still mentally competent to do so, and at which point you want to call it a day. This can all be independently verified before action is taken.

As posters have noted above, it should be a choice and not based on the financial costs if people don't make that choice.

Some incurable illnesses are so bad and so excruciatingly painful that strong painkillers make minimal impact. Denying someone the ability to avoid that suffering is downright cruel. If they choose die naturally, that's fine, but they should be able to choose not to suffer if that is their preference.

I'm on the belief that care homes should be state run as an extension of the NHS. It shouldn't be a profit making business model. Cradle to Grave.

A absolutely believe that euthanasia should be an option.

I don't think people really understand late stage dementia until they have seen it. It's not something that is ever broadcast on TV because that is robbing people of dignity.

If dementia patients were left to their own devices they'd wonder off and get lost. And probably die of exposure or dehydration early on in the illness. But as a "caring society" we track them down lock them up "look after them" until they die a horrific death.

When they are unable to swallow FFS you'd be jailed for abuse if you had a dog, lying in bed unable to eat. Skeletal skin and bone.

But because they are human they have to lay there and suffer.
The person who you knew and loved is long gone, the happy caring soul who loved to sing, died years earlier. Yet the physical body is alive and suffering.

Quality over quantity.
A serious conversation needs to happen.

Agree, @k1233 and, fortunately, we can do exactly that.

I don’t agree. It’s a difficult issue and I’m so sorry for your experience op. However Canada is an example where assisted dying can go so wrong. Disabled people offered death rather than have small adjustments to improve their lives. Mentally ill people offered suicide by the doctors treating them.

Treating someone’s pain even if it hastens their death is allowed in the uk. I don’t think any more than that should ever be carried out by doctors.

If dementia patients were left to their own devices they'd wonder off and get lost. And probably die of exposure or dehydration early on

I'd query whether dying over a few days, lost and terrified, of cold and hunger is preferable to whatever care home experience you're imagining.

Yes that was tough. I worked in one at the time. The residents who made it were never the same after. Many cried daily that this was worse than the war. Atleast then they had freedom they would say.

The same parameters could be applied to the progression of the illness no matter the length of time. Be it unable to communicate, unable to to control my bodily function or wherever I decide my life is beyond what I find living a fulfilling life. This is what I would want in my case.

Interestingly - it seems, much like this thread, a majority are in support but fear it may change the doctor-patient relationship. I would strongly hope medics wouldn't recommend assisted dying to ease NHS pressures but these are the sorts of consequences that would need to be mitigated for

www.telegraph.co.uk/news/2024/08/18/fear-doctors-encourage-assisted-dying-ease-nhs-strain-poll/

But I will say the dementia issue is incredibly tricky! Some are actually very happy if cared for effectively. Even in late stage and in a sense locked in. They can be reanimated with certain communication techniques and music. Is this them or is this a kind of muscle/ brain memory. Or even if it’s not them does it matter if it’s a new them and they have joy.

That one’s super tricky because they don’t have capacity or ability to communicate at all times. And mood / environment/ triggers can switch wishes rapidly.

For those with capacity it is quite simple. It should be their choice.

God knows what to do about those suffering from dementia.

I'm not imaging anything I had a Grandmother who took dementia in her early 60s so fairly fit at the time 5 years at home, when she eventually fell broke her hip and was deemed too far gone to return home. There was no money to pay for care the LA paid it. Then 6 years in a nursing home her death was slow and horrible to watch. She couldn't remember how to swollow so effectively starved to death in the end. Horrible and brutal way to die.

You'd be in court for animal cruelty if it was a dog that couldn't eat, doubly incontinent (had been that way for years), skin and bone, too weak to stand, unable to acknowledge anyone. No clue who people were was like that for years.

Treating someone’s pain even if it hastens their death is allowed in the uk. I don’t think any more than that should ever be carried out by doctors.

@User6874356

Have you ever tried asking someone with advanced dementia if they are in pain? Have you tried asking them if they want to be given medication to prolong their life?

No, of course you haven’t.

Because you can’t.

Advanced dementia robs the person of the means to communicate.

They can’t tell you if they’re in pain, they can’t tell you if they wish to live.

They have no say over their own life. Their autonomy has been totally removed.

Many of them will die after months in excruciating pain because they cannot indicate that they are suffering. So that decision to administer pain relief which may hasten death is already in the hands of another person. If it is given anyway and the individual with dementia didn’t want to receive pain relief they have no way of indicating this, so they’ll have, in effect, been euthanised.

If euthanasia is wrong on moral grounds then it is wrong to give potentially end-hastening pain relief unless the recipient expressly indicates informed consent to receive it.

It cannot be right in some instances and wrong in others. If people without capacity cannot consent to ending their life they cannot consent to pain relief either, nor any treatment which could negatively impact their longevity, even if it improves their quality of life.

Or we accept that people should be allowed to die with dignity.