Active discussions

Please or to access all these features

Talk
AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

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

722 replies

Noras · 18/08/2024 17:41

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).

OP posts:
Thread gallery
13
neverbeenskiing · 21/08/2024 09:52

I have a cousin who is more like a Brother to me as we were always very close as children and he lived with us for a time. He suffers from a severe and enduring Mental Illness. He is in a residential home as he cannot live independently. He didn't finish school, having spent most of his adolescence and young adulthood involuntarily detained in hospitals. He has never worked, never had a relationship, or even a friend. He lives in a constant state of fear and confusion, thinking the Nurses or other residents are trying to poison him. He has tried to kill himself many times over the years. He spends his days pacing around, muttering to himself, crying and occasionally tries to watch TV but can't focus for long.

His psychosis is "treatment resistant" which means that every single medication available has been tried and does not work. The medication does sedate him (without it he would be awake for days on end) so at least he has the respite of sleep now (albeit disrupted by vivid nightmares) and it means he does not have the energy or motivation to abscond, fight his carers or do himself serious harm these days. But it also causes side effects that he finds distressing and embarrassing.

If I could end his suffering without facing a lengthy prison sentence that would take me away from my DH and children I would do it in a heartbeat. There is no joy in his life, no purpose and his Doctors have been clear that there is no prospect of things improving. He is only in his early 40's.

As much as it feels callous and people find it distasteful, I do agree with OP that it is naive to fail to think about the cost implications of keeping people alive who have no prospect of meaningful recovery and no quality of life. My cousin will need 24 hour specialist Mental Health care for his whole life, when Mental Health services are so chronically overstretched that many people who could feasibly recover fully with the right support cannot access any help at all. I can love my cousin dearly and still accept that his situation, in addition to being heartbreaking, is also hugely costly and that the money spent on his care could be used to help others.

Octomingo · 21/08/2024 09:21

Starlingexpress · 21/08/2024 09:09

One of the greatest challenges around the re-normalization of natural death is the societal shift away from multi generational living and support of frail and ill relatives.
Women have to work so are no longer able to fulfil the traditional role of family caregiver. A lot of the distress and difficulties around supporting an increasingly ill and frail relative is caused by living arrangements and distance. Elderly people now live alone, often refusing appropriate care and support from ‘strangers’ . Families are left trying to juggle work, children and the stress of calling with dad twice a day to make sure he takes his medication and hasn’t fallen fown the stairs.

That pressure has a cumulative effect on family carers and results in refections on the last months of life in what used to be recognised as natural decline and dying, as being hell on earth from the carers perspective.

Show quote history

But how many older people had dementia then? Looking after a frail older person is very different to dementia. Not that I'd want to do either, to be honest. Those poor, poor ancestors of ours looking after either children or old people, whether suited to it or not.

iloveeverykindofcat · 21/08/2024 09:11

@Noras what you say sounds logical but I think we have to be extremely careful about asking/enabling doctors to deliberately take actions intended to hasten death (as opposed to refraining from preventing it). Not because I'm afraid of bad or power mad doctors, whom I'm sure are the exception, but because once you do that you fundamentally change the institutional culture of the hospital. This changes the way people operate and the way they make decisions in ways Im not at all sanguine about. Not overnight, but it will happen.

Starlingexpress · 21/08/2024 09:09

iloveeverykindofcat · 21/08/2024 08:32

I'm on the fence, and I also think there's an important distinction between euthanasia and assisted suicide. I think there are many individual cases in which euthanasia would be preferable and many scenarios in which I would wa nt it myself, but as a sociologist I'd be very concerned about the effect on work and organisational cultures within health care settings. What I'd like to see first is the re-normalization of natural death, and an end to aggressive interventions for people at the end of their natural lifespan.

One of the greatest challenges around the re-normalization of natural death is the societal shift away from multi generational living and support of frail and ill relatives.
Women have to work so are no longer able to fulfil the traditional role of family caregiver. A lot of the distress and difficulties around supporting an increasingly ill and frail relative is caused by living arrangements and distance. Elderly people now live alone, often refusing appropriate care and support from ‘strangers’ . Families are left trying to juggle work, children and the stress of calling with dad twice a day to make sure he takes his medication and hasn’t fallen fown the stairs.

That pressure has a cumulative effect on family carers and results in refections on the last months of life in what used to be recognised as natural decline and dying, as being hell on earth from the carers perspective.

Original poster
Noras · 21/08/2024 09:02

And all the GP know exactly wha this active dying. My next door neighbour was a GP and I described to him my mother’s progress. He said she will die by this day and he was spot on without even seeing her.

He said if deterioration is weekly you have weeks, if it’s daily you have days etc.

There is a way to legally define this with key indicators.

OP posts:
Starlingexpress · 21/08/2024 09:00

helpfulperson · 21/08/2024 08:55

I think most doctors are very for taking measured decisions about end of life. But they get a lot of pressure from families looking for them to do do something, anything to prolong life. And often threatening law suits if they refuse. The couple of hospice nurses posting on tiktok talk about this.

The media coverage which escalated the demise of the Liverpool care pathway and the regular daily mail ‘outrage’ stories about DNACPR decisions doesn’t help.

Original poster
Noras · 21/08/2024 08:57

Dearg · 21/08/2024 08:52

In that way no.One need bear witness to and watch the…

Seriously? One of your arguments is that others should not have to watch this messy and often unpleasant process?

Op, I am a strong believer in making my own choice and in circumstances where it could be my choice, totally support my death being assisted,

I have also witnessed the deaths of my own parents and my MIL , to cancers and heart disease respectively.
At no point would I have described that process as a pantomime.

But totally agree that over treatment of the more minor issues associated with active dying is not at all helpful.

Edited

I used pantomime because it is farcical in this day and age when we can spend probes to outer space that we are still making people die in this way but giving them a mouth swab to clean their mouth as a bit of comfort.

OP posts:
helpfulperson · 21/08/2024 08:55

I think most doctors are very for taking measured decisions about end of life. But they get a lot of pressure from families looking for them to do do something, anything to prolong life. And often threatening law suits if they refuse. The couple of hospice nurses posting on tiktok talk about this.

HairyToity · 21/08/2024 08:53

I think it's utterly barbaric that euthanasia is not available to us.

Dearg · 21/08/2024 08:52

In that way no.One need bear witness to and watch the…

Seriously? One of your arguments is that others should not have to watch this messy and often unpleasant process?

Op, I am a strong believer in making my own choice and in circumstances where it could be my choice, totally support my death being assisted,

I have also witnessed the deaths of my own parents and my MIL , to cancers and heart disease respectively.
At no point would I have described that process as a pantomime.

But totally agree that over treatment of the more minor issues associated with active dying is not at all helpful.

iloveeverykindofcat · 21/08/2024 08:51

@urbanbuddha my grandmother died an awful extended death from Parkinsons with dementia. She was riddled with osteoporosis, broke both hips, and probably weighed 5.5 stone by the end. Naturally she would keep getting infections, and every time, she would be hospitalised and given IV antibiotics etc, furthering her degeneration, until my mother finally had to say for the love of God, stop. Just keep her comfortable and let her die. I would say in such a situation, doctors should be able to say something like "look, we probably could treat this acute illness and extend this persons life a bit longer, but we should we?" But no one did.

Original poster
Noras · 21/08/2024 08:47

Hmm I would propose that doctors acknowledge and recognise the active period of dying as a minimum. They are then sanctioned to end that life swiftly if a final direction was made to that effect, even if ten years beforehand.

In that way no one need bear witness to and watch the whole pantomime of those final two to three weeks. What is the point of life at that point with the person unable to sit, unable to eat, taking only a few sips of water having their mouth cleaner with those stupid swabs on stick things etc. it’s the same old routine isn’t it?

. I think that life can certainly be cut at that stage as we can avoid the whole pantomime of chasing the pain, titrating up the drugs, using the pump driver, the anti sickness drugs, the anti convulsants etc.

Quite frankly if the legislature and the NHS cannot define what is the active stage of dying and legislate for it with enough word security then we need people who can. I mean we all know what it looks like - the person can't sit up any more, they have not eaten for a week, they sleep increasingly etc etc

Once identified, 2 doctors can sign off on it and then the person can have the fatal shot.

The whole thing is optional - you can go the old fashioned way or the swift exit.

That is my conclusion from this whole debate and one day we if can save people this last 2 or 3 weeks if won’t come soon enough. I just wish that an MP had the strength of mind to propose a private members bill.

As for the other issue of earlier euthanasia I think that it would be too difficult to legislate for and possibly open to abuse. I’m sad about that but I think that people have made a valid point.

However even an earlier termination by 2 or 3 weeks would release an awful lot of people to manage pain in those people with still quality of life who are before the active dying session.

To insist that people endure that final 2 or 3 weeks I think is inhumane and callous.

OP posts:
urbanbuddha · 21/08/2024 08:35

What I'd like to see first is the re-normalization of natural death, and an end to aggressive interventions for people at the end of their natural lifespan.

Can you elucidate on that?

iloveeverykindofcat · 21/08/2024 08:32

I'm on the fence, and I also think there's an important distinction between euthanasia and assisted suicide. I think there are many individual cases in which euthanasia would be preferable and many scenarios in which I would wa nt it myself, but as a sociologist I'd be very concerned about the effect on work and organisational cultures within health care settings. What I'd like to see first is the re-normalization of natural death, and an end to aggressive interventions for people at the end of their natural lifespan.

Starlingexpress · 21/08/2024 08:26

Noras · 21/08/2024 08:00

The way that people suggest that all pain can be controlled by morphine or proper palliative care is disingenuous. If it were true then there would not be the research into things like bone tumour pain which is difficult to manage with morphine as it acts in a different way. The problem being that when you have multiple tumours you have quite a risk of secondaries into your bones.

If cancer was so pain manageable the concept of breakthrough pain would not exist. Or there would not be arrangements for hospice to refer to specialists. The trouble is that if that breakthrough pain occurred on a Friday you will have a challenging job to get access to a specialist etc

Heck I could not even get an epidural when giving birth because of a major road collisions and ended up with my daughter’s shoulder stuck in the birth canal. Tens of stitches later and a week to do my first poo and yes I’m somewhat sceptical about the ability of the NHS to control pain. However I did have the joy of vomiting over the birthing team - my daughter was born to a huge audience of mum and baby team! That’s the other thing - the pain killing does not take the pain away it masks it but your body still knows things are not right so you throw up - hence anti sickness as part of palliative care.

We will never have enough money to give everyone a perfect pain free death with specialists available on the end of a phone etc

I’m struggling to understand your arguments now to be honest. If we don’t need specialist palliative care then we don’t need specialists in urology, or cardiology or obstetrics or any other clinical area.

Research in pharmacology and healthcare has existed for as long as time. Science and expertise has allowed us to develop practices such the use of drugs like bisphosphonates and introduce targeted palliative radiotherapy for bone mets. But let’s cut that all too because it’s not solved all the problems.
‘

Coughsweet · 21/08/2024 08:25

I don’t remember this time when childbirth was supposed to be pain free in my lifetime? I’m 51. I ended up in the HDU after my first, an hour of stitches after a huge tear and blood loss with foreceps but thankfully I was provided with the right pain relief at the right time so I didn’t hurt until I started healing.

Coughsweet · 21/08/2024 08:19

My father died 18 years ago from bowel cancer, my father in law died last year from pancreatic cancer and my friend’s father died a fortnight ago from prostate cancer. Their pain and care seemed managed and I have not been left with a sense their deaths were horrific. In case of the last two a lot of the care was supported by a relatively fit partner and the case of my father, while he and my mother were still together they had terrible relationship but my brother and I were able to help, fortunately I was on maternity leave with a tiny portable baby,and unlike the other two he died in hospital where the care seemed peaceful and well managed. I was allowed to sleep in hospital in the visitors room for his last week with my baby in the pram which I was thankful for. Available support makes a massive difference in my view and I would like everyone to have that but euthanasia will be cheaper for the state and if that is more likely to be an option taken if palliative care is poor then it will stay poor.

Original poster
Noras · 21/08/2024 08:00

The way that people suggest that all pain can be controlled by morphine or proper palliative care is disingenuous. If it were true then there would not be the research into things like bone tumour pain which is difficult to manage with morphine as it acts in a different way. The problem being that when you have multiple tumours you have quite a risk of secondaries into your bones.

If cancer was so pain manageable the concept of breakthrough pain would not exist. Or there would not be arrangements for hospice to refer to specialists. The trouble is that if that breakthrough pain occurred on a Friday you will have a challenging job to get access to a specialist etc

Heck I could not even get an epidural when giving birth because of a major road collisions and ended up with my daughter’s shoulder stuck in the birth canal. Tens of stitches later and a week to do my first poo and yes I’m somewhat sceptical about the ability of the NHS to control pain. However I did have the joy of vomiting over the birthing team - my daughter was born to a huge audience of mum and baby team! That’s the other thing - the pain killing does not take the pain away it masks it but your body still knows things are not right so you throw up - hence anti sickness as part of palliative care.

We will never have enough money to give everyone a perfect pain free death with specialists available on the end of a phone etc

OP posts:
Original poster
Noras · 21/08/2024 07:35

Starlingexpress · 21/08/2024 06:48

I’m not going to push the issue further because it’s very personal to you but I think it’s important to acknowledge that your experiences of death has clearly impacted you significantly. I know posters have previously suggested to you that there seemed to be a lot of issues around the choices your father made about his end of life care that mat not have been appropriate, given his diagnosis and the presenting symptoms. I can’t recommend strongly enough that you think about where you are at as a bereaved daughter, and how that is impacting your life even periodically now.

Your experiences, although sadly not unique, are also not typical and I think it’s important on a thread where people are talking about euthanasia to counter the idea that every death is horrific and traumatic. Death is not comfortable, death is not talked about enough but it important that those of us who have also experienced deaths of loved ones AND in a professional capacity are allowed to share our experiences of ‘good’ deaths without being shouted down repeatedly.

As I’ve repeatedly said on this thread we need better and more universally available specialist palliative care for those who need it, and more support, training and education for those who support people with palliative cate needs in other health and care settings.

But to continue to suggest that everybody dies in distress is untrue and unfair to the many, many HCPs who work hard every day to deliver symptom control and end of life care. It also creates fear and distress amongst people who are facing a life limiting illness, as well as their families and carers. If as you and others suggest, everybody dies in distress, then lets close hospices and cut palliative care funding and education completely, cut all palliative care consultants and specialist nurse roles and stop the use of anticipatory prescribing and medications titration. By your assertions we have nothing to lose.

Show quote history

The hospice care took some of the pain away but the reality is that pain patches or spoonfuls of morphine are not going to take all the pain away. Maybe some people have a ‘peaceful’ cancer death but for everyone there will be others that don’t. That is why I asked for an honest conversation.

I have watched 3 people die and all 3 people did not have particularly pleasant deaths. Recently I watched my friend support her mother and she felt that her life was on hold for the final 3 months as her mother went into decline before Xmas and died in February. After my DM died I attributed it to one of those things a bad death. After my dad died I attributed it to the shocking nature of his cancer. After my friend’s mum died I realised ‘hang on is this whole dying thing inevitably unpleasant?’
There was in all a time when the drugs were chasing the pain. Why? Probably too conservative dosing because there needed to be a far larger dose I don’t know.

Some people’s comments reminds me of the pre 2000 when women went hushed about childbirth and pretended it’s all lovely and well managed. I believe they ended up being a major cause of post natal depression as women ended up shocked that it was not.

OP posts:
Prenelope · 21/08/2024 07:03

Starlingexpress · 21/08/2024 06:48

I’m not going to push the issue further because it’s very personal to you but I think it’s important to acknowledge that your experiences of death has clearly impacted you significantly. I know posters have previously suggested to you that there seemed to be a lot of issues around the choices your father made about his end of life care that mat not have been appropriate, given his diagnosis and the presenting symptoms. I can’t recommend strongly enough that you think about where you are at as a bereaved daughter, and how that is impacting your life even periodically now.

Your experiences, although sadly not unique, are also not typical and I think it’s important on a thread where people are talking about euthanasia to counter the idea that every death is horrific and traumatic. Death is not comfortable, death is not talked about enough but it important that those of us who have also experienced deaths of loved ones AND in a professional capacity are allowed to share our experiences of ‘good’ deaths without being shouted down repeatedly.

As I’ve repeatedly said on this thread we need better and more universally available specialist palliative care for those who need it, and more support, training and education for those who support people with palliative cate needs in other health and care settings.

But to continue to suggest that everybody dies in distress is untrue and unfair to the many, many HCPs who work hard every day to deliver symptom control and end of life care. It also creates fear and distress amongst people who are facing a life limiting illness, as well as their families and carers. If as you and others suggest, everybody dies in distress, then lets close hospices and cut palliative care funding and education completely, cut all palliative care consultants and specialist nurse roles and stop the use of anticipatory prescribing and medications titration. By your assertions we have nothing to lose.

Show quote history

I am a psychotherapist and work a lot with bereavement and death anxiety and I have to say I agree with this post.

Starlingexpress · 21/08/2024 06:48

Noras · 20/08/2024 23:42

Usually it stays buried and on a day to day basis I’m fine. I helped a close friend when her mother was dying this year and it did re surface a bit.

I’m writing graphically because people don’t often see death. They hear words like ‘someone passed peacefully in their sleep.’ We literally bury people into nursing homes and see few very elderly people at the end of their lives. I think the this is the issue. We want things sanitised/ tucked away and if people speak out as I have done it makes people uncomfortable. The Royal Family was a case in point - we could all see the black bruising on the queen’s arms and we all saw her wear gloves for a year or so behind. At least now the RF realise that they can speak out and say ‘yep we are not well and need to have time out’. I just think that a bit of honesty is good and really very few people ‘die in their sleep.’ That’s the Holy Grail of a death not likely to happen to the majority of people. The reality is that it will be a cancer, a brain disease like dementia or an infections ( that makes your organs go into shock with sepsis) that will kill you unless you happen to have a weak heart etc.

Frankly it’s up there with the secret woman once carried about childbirth. Woman did not like to go into too much detail with that either. At least with child birth you get a baby out of it.

Edited
Show quote history

I’m not going to push the issue further because it’s very personal to you but I think it’s important to acknowledge that your experiences of death has clearly impacted you significantly. I know posters have previously suggested to you that there seemed to be a lot of issues around the choices your father made about his end of life care that mat not have been appropriate, given his diagnosis and the presenting symptoms. I can’t recommend strongly enough that you think about where you are at as a bereaved daughter, and how that is impacting your life even periodically now.

Your experiences, although sadly not unique, are also not typical and I think it’s important on a thread where people are talking about euthanasia to counter the idea that every death is horrific and traumatic. Death is not comfortable, death is not talked about enough but it important that those of us who have also experienced deaths of loved ones AND in a professional capacity are allowed to share our experiences of ‘good’ deaths without being shouted down repeatedly.

As I’ve repeatedly said on this thread we need better and more universally available specialist palliative care for those who need it, and more support, training and education for those who support people with palliative cate needs in other health and care settings.

But to continue to suggest that everybody dies in distress is untrue and unfair to the many, many HCPs who work hard every day to deliver symptom control and end of life care. It also creates fear and distress amongst people who are facing a life limiting illness, as well as their families and carers. If as you and others suggest, everybody dies in distress, then lets close hospices and cut palliative care funding and education completely, cut all palliative care consultants and specialist nurse roles and stop the use of anticipatory prescribing and medications titration. By your assertions we have nothing to lose.

Firefly1987 · 21/08/2024 00:36

Noras · 20/08/2024 23:42

Usually it stays buried and on a day to day basis I’m fine. I helped a close friend when her mother was dying this year and it did re surface a bit.

I’m writing graphically because people don’t often see death. They hear words like ‘someone passed peacefully in their sleep.’ We literally bury people into nursing homes and see few very elderly people at the end of their lives. I think the this is the issue. We want things sanitised/ tucked away and if people speak out as I have done it makes people uncomfortable. The Royal Family was a case in point - we could all see the black bruising on the queen’s arms and we all saw her wear gloves for a year or so behind. At least now the RF realise that they can speak out and say ‘yep we are not well and need to have time out’. I just think that a bit of honesty is good and really very few people ‘die in their sleep.’ That’s the Holy Grail of a death not likely to happen to the majority of people. The reality is that it will be a cancer, a brain disease like dementia or an infections ( that makes your organs go into shock with sepsis) that will kill you unless you happen to have a weak heart etc.

Frankly it’s up there with the secret woman once carried about childbirth. Woman did not like to go into too much detail with that either. At least with child birth you get a baby out of it.

Edited
Show quote history

Yeah people don't want to hear it-even on here they'll be like "have you had counselling" when what you are feeling is entirely NORMAL. Who would feel ok about it?

I hope those intending to cling on to the bitter end in agony are going to at least spare their kids from having to watch it. It will mess them up. We put in the paper my dad passed away peacefully as well-technically the end might've been peaceful (he went unconscious) but it was preceded by 18 months of horrific suffering. People don't wanna hear about negative things in life, they'd rather you told all that to a therapist so they can keep burying their heads in the sand pretending we have actual palliative care in this country. I also believe that's not enough-unless they're going to start giving people fentanyl or heroin.

redalex261 · 21/08/2024 00:18

It should absolutely be about quality of life not quantity. As regards those with dementia if that person as made a legal declaration when they had mental capacity (in a highly regulated notarised interview) that they be given a life ending dose of something when they reach X point in their deterioration then I think it can be managed - but should apply in very controlled circumstances.

The difficulty is there’s creep - look at Canada, started off very restricted now young people with poor mental health are agitating for right to die. I don’t know how it works in Switzerland or if there are other countries with legalised euthanasia doing better at it.

Also, doctors carrying out invasive life prolonging treatments when there’s no hope of any quality of life without high levels of pain and suffering - why? I get that sometimes it’s upset relatives pushing to keep their loved one hanging on for their own feelings, but there needs to be more dialogue about realistic outcomes.

I can’t fault the level of palliative care my dad had in the last three months of his life following a terminal cancer diagnosis. He has a good death with no pain, should be that way for everyone.

Swipe left for the next trending thread