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).

How have you come to the conclusion that is the opinion of so many?

Some retirement, assisted living & care homes are very nice. Some are not. But given the discussion in this thread, it's a reasonable assumption we are talking about nursing homes. For the most part, those that go into nursing homes are not coming back out other than in the back of black estate car. Those with their faculties know it, the families know it. So imagine the feelings surrounding being in these types of places.

Yep!
There is a lovely thread on the chat board, where an activities co-ordinator for a care home is after some original ideas for activities to do with the residents. The place she works at sounds amazing, and not a place of doom, gloom and death at all.

It does still happen! I can assure you, even if not on your watch.

I haven’t personally encountered family members who are terrified of it. I think that would be pretty unusual, given you are near the end and it’s there fo reduce suffering

We make decisions all the time about who gets medical aid and who doesn’t, there’s nothing new about that.

So why do we need a debate about euthanasia? Why not just get the nurses who are extensively administering lethal injections to end lives to increase their reach? If it’s such a widespread practice surely those nurses could just work harder and faster?

Euthanasia isn’t about who does or doesn’t get medical aid. It’s about a deliberate action to end a life.

OP, I'm so sorry. That sounds so very hard
Were my grandmother not currently in a care home with dementia, I probably wouldn't agree with you. But she is and I do.
My vivacious 'Oma' who spoke several languages, travelled extensively, was a chess champion, was a teacher all her years and taught Gaelic into her late 70s, didn't watch TV as she preferred to read, brought up her four children on her own in the 50s/60s as her husband abandoned them.
She was a born educator and it's the cruellest disease.
Now she's fouling herself in a care home, eating food that she wouldn't have touched in a million years before (she was a wonderful cook!), absolutely no idea who she is or who her loved ones are, can't really move or speak, won't have a penny to leave her children as it's all being taken up by care home fees.
It's heartbreaking. She'd never have chosen to exist like this.

If Alzheimer’s / MND / insert condition of choice, was a quick Hospt stay and out, that would be a brilliant solution indeed. But they aren’t, so it isn’t. Don’t be silly.

No that was in response to a PP who was asking how you would decide where to draw a line when it came to treating or not treating premature babies, so not euthanasia in this case.

Do you normally just respond randomly to posts without reading the quote within them?

Noras and others in similar situations I am so sorry you went through what you did it can be traumatising and I believe unnecessary

I do believe we absolutely do need to have honest discussions around euthanasia

What I believe shall drive those changes is not moral grounds, the unnecessary suffering but financial costs and this makes me feel very sad we could have had less suffering for a number of years

having witnessed a beautiful calm and peaceful passing and one that was utterly horrific I know which one can leave loved ones feeling so different,
giref never ends but it’s certainly easier when not left traumatised

You make it sound like there is a vaccine or preventative measures to totally eliminate dementia. Not everyone is as privileged as yourself to have access to such 'dementia prevention' lifestyle knowledge until it's on their door.

Maybe because they have visited many and seen what they are like.

Care homes can be great places with lots of social activity and outings. The people all make friends and have fun and the social activity person can be busy making people happy.

Severe dementia units are depressing places where people are in the main confused. My DD was about 7 when and ontook her to one to visit nana.
random people would grab her and talk incoherently to her. I decided that the place was too scary for her. Last Xmas I was roped in to help with the ent at one and it was hard to get any reaction. It was a nursing unit dementia combined and they were all placed on chairs in the living area and just sat there before being wheeled back to bed.

Nursing home are full of people needing intense nursing care. They tend to be quite depressing places and people are too ill to participate in trips and activities other then in a more passive way.

Overall the atmosphere is stuffy overheated institutional and the food is pants.

In my experience dual homes have separate areas for care and nursing and they are allocated as nursing beds or care beds. They also have separate floors for severe dementia that have locks and keypads for the lifts etc.

If people die in care homes with dementia and nursing bed allocation they most likely have not died of severe dementia but an intermittent illness. This is the issue because a care bed can’t administer morphine. They need to be in a nursing care bed . This was the issue with my mum and why there was a gasp of horror at my hearing for ChC . My mother was refused Chc on the day she died despite having shock and not eating / drinking for weeks. She should have been in a nursing bed and not just given paracetamol. To admit that she should have been awarded Chc funding for the last few days would be an admission that her care was negligent as she had no nursing she just thrashed the sheets and grimaced. This is why I begged dad to move her to a nursing home.

You don’t need separate areas for residential and nursing. It’s not about areas, it’s about the type of care. Often they are separate but if someone needs nursing care (funded nursing care) they won’t automatically be moved from their residential care bed. It is about registration, skills and funding - there is not an arbitrary line between residential and nursing.

Dementia units are separate for the safety of individuals and to ensure care and support is targeted at the right level. That is true of both residential and nursing registered homes. Obviously ditto any dual registered homes.

Of course people die from advanced dementia in residential care homes. Even in nursing homes and hospitals, it is usually an infection or other intercurrent illness that is a contributing factor.

Palliative care nurses and district nurses visit residential care homes all the time. It would be cruel to move someone who is at the advanced stages of dementia and likely to die soon, so the care comes to their home. They do not need to be in a nursing home or nursing bed.

I am sorry you had traumatic experiences but some of what you are saying is factual incorrect and could upset people who have loved ones in care homes.

Are you normally so rude? You’re trying very hard to come across as an ‘expert’ and yet you seem to struggle comprehending the basic concepts that people have been discussing on this thread for a couple of days now.

Treatment decisions and value judgements about quality of life and how that is measured are inextricably linked to questions about euthanasia and the slippery slope argument in regards to human life and vulnerability.

But euthanasia is a deliberate, planned act rather than an omission of care and treatment so to make a statement which suggests that the decision to euthanise somebody is acceptable because we make medical decisions all the time is deeply flawed.

Perhaps that’s not what you meant to say though but it would be worth spending a little time ensuring that your contributions to the thread are coherent.

But why is it that so many on MN have this idea that living in a care home is a miserable experience? That was my question.

That’s what we saw from Day 1 with MIL! She was discharged from hospital into an NHS funded bed in a care home temporarily; then after a few weeks into another care home, found by Social Services, rated inadequate by the CQC.

In our view, her treatment in both was neglect - she had dentures, which they didn’t put in at meal times, but they didn’t assist her with eating either. She just went without food. Nobody apparently noticed the inside of her mouth was black; and she was in pain with oral thrush after weeks on antibiotics in hospital. Just a few examples. She was left in a bed on her own; her glasses out of reach and not even a television to occupy her (and she was obsessed with TV quiz programs by then). Even one of the volunteers told us, unprompted that she was always telling them staffing levels were too low; and the response was it was within the legal guidelines.

DH made a complaint to Social Services while she was there, and after her death.

And again, why I'd welcome euthanasia. If I'm at the point where I need constant looking after and can't advocate for myself, I don't want to live. I'm not sure what's going to go first for me:body or mind, it depends which side of the family I take after. But neither appeals.

Oh ok, so your problem with my position on this is semantic? Or lexical?

I absolutely suggest that nurses and doctors administer pain relief at the end of life that they know will suppress breathing and very likely hasten death, yes. This isn’t up for debate, it’s standard practice. The primary reason for administering the dose is to relieve pain, but the secondary impact is that in someone about to die, it will usually speed things up. I’m sorry if you find this distressing, have you ever seen someone die before?

When I was a practicing HCP I worked in elderly care and latterly in palliative care, so I have witnessed death many, many times. Death, particularly for the elderly, is a process that takes weeks or months in most cases. Patients will take gradual ‘steps’ downwards in their health and their QOL sometimes over many months. Death, more often than not, is a process of deterioration, not a singular event. The final stage of that process is colloquially referred to as rattling. You may have heard of a death rattle? Same thing. Essentially, the lungs fill with fluid and it is incredibly painful as the patient essentially drowns over many hours/ days. I once saw a man rattle for over a week. It’s not often a patient is conscious at this stage and almost never lucid. Occasionally, they scream or cry out because of the pain of it. Once a patient is rattling there is no chance that patient is going to recover miraculously. They will die within hours or days and gradually decline as they do, suffering more and more as they go. It is in these cases where the administration of pain relief suppresses breathing and speeds up the process. For absolute clarity (I assumed wasn’t needed) I am not suggesting doctors and nurses are running around bumping off old people with UTI’s and common colds Shipman style. I am clarifying that assisted dying (not assisted suicide) already exists in a completely sanctioned way in society.

@Noras
Life is what it is. At times beautiful, at times horrific.
When you experience something that is horrific for you, you would do anything to protect your loved ones from it, but you can't protect them from life. And you can't tell what they will be able to handle either. If you let it take up your thoughts now, you are letting the future rob you of your present.

Feeling able to control life after our time is something you may try to latch onto, a way of feeling more in control, a way to ensure you have done what you can, but in reality life will go in the direction it wants, and you really won't be able to alter it.

You are understandably thinking of your son's future. But at the end of the day you will really have to trust that things will be as they will be. Leaving money for your son, and I would hope equally to your daughter too, will in no means guarantee a happier more fulfilled life. There are far too many possibilities, to many unforeseen consequences of every choice.

Some people will lose their parents in prolonged agony, others in their sleep and others in every way in between.

Those around you at the time of your death will manage the best they can, just as you did. Just as I would love to raise my children again, starting from now, so I may be the perfect mother, but it's not possible, I did the best I could for them at the time.
And so did you while assisting your parents.

Yes, we can and should debate issues, but I believe that every choice has a set of both positive and negative consequences.

Don't spend your time worrying about a future which has not yet come to pass.

For me sadly to get to the rattle in itself takes too long and the 3 or 4 weeks before then I would definitely think should be avoided. As soon as someone is not eating or drinking and has not done so for several days in an advanced state of dementia - what is the point of pussy footing around so we all get to see the sheet clutching?

Trying to control death leads to all sorts of anxieties. Best to be more accepting.

Possibly because that is their experience of care homes.

Lots of people only end up in homes when their dementia has reached crunch point.
They've fallen or otherwise needed hospital attention, the hospitals Duty of Care kicks in they assess the patient as too far gone to go home safely, so at that point the council needs to fund a care home.

They sort of skip the not to bad stage and end up in a severe dementia unit which are just depressing places to be.

I think homes are probably not too bad if they are looking after people with physical disabilities but are able to enjoy company but dementia is evil.
However I don't know anyone who's gone into care due to physical issues, only dementia.

Edited with apologies as I replied to the wrong quote.

If you’re an HCP who witnessed a patient experiencing a symptomatic ‘death rattle’ and didn’t act to reassess or refer for reassessment by somebody qualified to do so, and failed to reassess the efficacy of the prescribed anti cholinergic regime and the need for dose increases and amendments, then YOU are part of the reason why we need more investment and training for those involved in the provision of palliative and end of life care.

And at the risk of being repetitive, the doctrine of double effect is an ETHICAL justification for the use of drugs with potential lethal consequences. It has no basis in the law or in clinical guidance or decision making. You can justify your actions in your own head all you like

If I suspected for one second that any of my staff were administering analgesia and sedation on a whim to kill somebody I would expect, and ensure that they felt the full force of the law

The perception of suffering and quality of life is so nuanced even within families and our perception of what somebody else is suffering is impacted by so many variables including our own emotional wellbeing, resilience and coping strategies.

There are many situations at end of life when the focus becomes the family member who is struggling most with what is often a very natural process.

There are a couple of instagram/tiktok pages created by hospice staff which actually try to demystify the fears that many people have about the dying process. Not for everyone but worth checking out if anybody was interested in seeing more.

The work of Dr Kathryn Mannix is also really valuable when considering our responses to end of life.