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).

Most people would have understanding at the limits of end of life where it's not in doubt about suffering and quality of life but, like all these types of debates, it's where the judgement calls move to the less clear cut and if we can create a framework that protects from abuse or other's self interest. This includes emotional manipulation. Humans are quite capable of carrying out actions in their own self interests that would generally be shocking to most of us. This includes getting rid of family members who are a burden or burning their entitlements. The issue is that not everyone has compasion or decency as we see literally everyday in how people behave.

The thing we should have learnt from. The second World.War is that NO ONE gets to decide which other humans are worthy of life. Talk about assisted suicide for those who are of sound mind if you like but opening the door to euthanasia is basically saying only some humans have the right to life.

The amimal argument is actually completely counter productive. Someone else makes a decision for the cat, the owner, based on their judgement of the quality of life for the cat without being able to communicate with it, known how it feels pain, what it still gets from life or what it's wishes are.
And people say that's the model they want for humans. That's the issue, normalising that someone else can make a judgement call on behalf of the sick cat, because they know best. It's been successfully done for pets, next up judgement calls on human pain and suffering.

I’m in my 50s and watched my own mother have a dreadful death from dementia (she was diagnosed at 59 - just a couple of years older than I am now). I absolutely want the right to choose assisted dying, there is no way I want to live like that. The last year she was bedridden, largely asleep, doubly incontinant, unable to speak, no idea who anyone was and very distressed. It was inhumane. I don’t want that for myself and I don’t want my own family to live through that suffering. I’m saying I want to be able to choose for myself before I am incapable.

The trouble is with things like dementia is that often by the time you'd want euthanasia, you're not of sound mind. My mum deteriorated rapidly but has now been stuck on the same plane- confused, no idea who she is, doubly incontinent, for about 2 years. I'd rather be dead than live like that, but I'm terrified I won't be able to make that decision when i need to. The thought of ending up like her in about 15-20 years is horrifying, but I wouldn't want to put the responsibility onto my kids.

The one framework I can see as feasible for euthanasia is where active treatment has been considered not to be in a person's best interest and they are dying. Or somebody with capacity is refusing active treatment and as a result is dying.

Eg: end stage dementia (or cancer or insert other terminal illness reaching it's final stages and capacity has been lost) and a decision has been made NOT to insert a feeding tube or otherwise to force feed, or administer treatments such as IV fluids or antibiotics. The person has no interest or ability to swallow food. Their life as it remains is characterised by either sedation/catatonia or agitation. They are being managed on a comfort pathway being treated for pain, agitation and so forth, waiting for natural death to occur, as it inevitably will. All of the above is already possible and is not euthanasia.

Or eg somebody with capacity who is reliant on intensive medical intervention to remain alive has made a decision, with no other means available to end their life (owing to their illness or disability), to refuse all medical intervention and in doing so intentionally die naturally (often by starvation).

Natural death in either of these kinds of circumstances may be protracted and involve suffering. In that context I can see it being possible to legislate for euthanasia, essentially to hasten natural, inevitable death, without there being a much of a slippery slope. Existing ethical standards on withdrawal of medical intervention (either in line with best interests or because of capacitous refusal) would cover the same criteria.

This would be offering a 2nd way to die as it were. Options: 1) Accept active intervention which may prolong your life but be uncomfortable / cause suffering, 2a) Decline active intervention and die naturally or 2b) Decline active intervention and die sooner / quicker / more painlessly with a bit of help. And you can't have 2b) if 2a) isn't a possibility. Eg those theoretically capable of remaining alive without medical intervention don't get access to euthanasia.

Severely disabled people who lack capacity but are currently kept alive because it is considered to be in their best interest to receive supportive and medical treatment, are unaffected as their best interests haven't changed. As 2a) already isn't on the table, neither is 2b).

This would be about hastening death in the actively dying, at the point at which medical intervention to prolong life is being abandoned in any case. I don't think it would save money at all, it would probably cost more money but I do think it would reduce suffering at the end of life.

Edit: the thing is, as I said previously, I think the biggest hurdle for most people suffering a prolonged death, that needs no new legislation whatsoever, is accepting / deciding that the time to stop aggressive medical treatment has come. Eg being able to recognise that hauling somebody bedridden with dementia into hospital for IV fluids, antibiotics and subjecting them to the pain and indignity not only of treatment but of the inevitable delirium/agitation that will accompany it, is just cruel and pointless, and goes against their best interests. So for the vast majority of people what is needed is not a discussion around euthanasia, but a discussion around advanced care planning / advanced directives, best interests and the futility of many medical treatments in terminal illness.

Assisted dying has existed in the uk in a completely unspoken way for decades. I have seen it many, many times when i worked in elderly care. When a patient becomes very definitely close to death (rattling, usually), It is completely normal for a practitioner to administer a very high dose of morphine which suppresses breathing and quickens the final hours/ days. It can mean someone suffers for 15 minutes rather than 15 hours or even days and is well known in the nursing and healthcare community as the final act of kindness you can do for a patient.

The problem is that it is unspoken and has been so for so long. The closest we have ever gotten to a conversation about it was when George 6th's death was hastened to be in time for the broadsheets instead of the tabloid presses via a massive overdose of pain relief. This was public knowledge even at the time, and discussed as if completely reasonable.

Since then we have lost sight of compassion in fear of boogie men who want to bump off old ladies. In the same way we have a cut off point for abortions, the same should be true for assisted dying. A set of criteria a patient must meet before euthanasia can be considered which focus around quality of life and medical need. The decision should never be made by the family, but the decision to offer it by a doctor and agreed/ disagreed by the patient in the same way a DNAR is discussed.

And do you think people with advanced dementia have a clue what's happening to them either?
They probably have less of a clue than the average pet who presumably at least recognises the people beside them.

While I understand their is a grey area between quality of life and zero quality. Their is definitely a point where you'd be in court for cruelty if you let a dog suffer in the same way as a human.

Agreed. You would in court if you inflicted the amount of pain and terror a dementia sufferer gets on a dog.

Keeping people alive to suffer is the first thing torturers learn.

Er but the point being no one ‘owns’ a person as you’d own a cat or dog. If my dog got cancer I could decide whether it was put down or not, if my mum got cancer, I rightly shouldn’t be able to decide whether she dies or not.

Add into that, a dog wouldn’t potentially have a £1million estate that I might inherit if said dog died early!!

The point is the suffering.

That's where there is a huge difference between dementia and cancer.

Cancer patients usually are able to make decisions, talk to family, know who their family is.

Dementia patients have zero clue, who they are never mind anything else, life long loves and passions are forgotten.
Someone needs to be able to make the decision for that person, exactly the same as a pet dog.

This doesn't happen anymore and hasn't for quite some time. I was involved in palliative care for over 25 years and observed, with increasing concern, the move towards the prescribing of morphine in totally inadequate doses. This was usually overseen by GPs who would do anything to avoid being involved in the death of even a terminally ill patient. Thanks Shipman 🙄 much suffering is routinely happening as a result. Nobody slips anyone a discrete overdose anymore.

The one option that someone diagnosed with dementia or another degenerative disease has is VSED along with the option to refuse active treatment/resus/antibiotics/artificial feeding etc. VSED stands for the voluntary stopping of eating and drinking. You have to stop fluids though otherwise it can be drawn out for weeks and weeks. You basically go onto palliative care with pain relief and sedation until you pass from dehydration. You have to convince a doctor to accept you as a palliative care patient otherwise you're on your own doing it at home by yourself with no comfort medications via syringe driver. Knowing the NHS they'd tell you to take paracetamol and get on with it alone and not bother the GP under any circumstances.

Yes I’m aware that the point of assisted dying is suffering, but putting a cat or dog down is simply not comparable

What! So what if that person has no close family or friends or trusted anyone to make that decision for them - who gets appointed then? Their local MP?

It’s not ‘exactly the same as a pet dog’ because quite clearly a pet dog is not as important as a person.

We could pay people to make these decisions?

That’s just utterly ridiculous - don’t you think that might open up the door to having quotas that have to be filled? Why should some random person determine if I die or not? What qualifications would you need to have to make this decision?

Quotas? Where on earth did that come from?

What so you don’t think paying people to make a decision about whether someone dies or not isn’t open to being manipulated?

What if the govt of the day wants to minimise care home fees that the state pays and gives incentives to these pay to make decisions in favour of ending lives?

I disagree that the decision is made by the pet owner only. My dog was my best friend and soulmate. We knew when each other were feeling under the weather. He most definately communicated to me when he had enough.

Well you sound absolutely crazy.

If it all comes down to costs though?

I don’t think costs should enter the equation at all though - as soon as costs are involved you’re essentially saying, well this person is old, in my opinion has poor quality of life, so let’s end his/her life to save on costs

I think there's conversations to be had about care costs

And conversations to be had about euthanasia.

Just probably not the same conversation