Dignity in Dying

Fully supportive of Dignity in Dying.

FIL had terminal cancer and was given morphine to settle him. One SIL didn't realise what it was for and was trying to stop him being given it, ended up in a row, where it was explained it was to help him pass peacefully.

MIL's been dying for about 5 years. Annual lengthy visits to hospital, they fix her up and she's back home - no mobility from stroke, heart failure, AF, badly managed type 2. She had a bad turn last year where the docs stopped her meds, last rights etc. We all thought she'd had it, but as part of her treatment they noticed her blood sugar was in the 20's, so injected insulin rather than have tablets. She had DNACPR. Anyway, she recovered, but is now not able to stand, so spends her days in a Nursing home with a nappy. She has to be hoisted into a chair or commode. Usually the commode is only used when she needs a crap.

She'd been ill again recently, and the docs discussed DNACPR as she's removed it during the last 12 months. We chatted whth her again and she decided to re-instate it. Anyway, with being looked after, and modern meds, she is still here.

In short - animals are often treated with more dignity than humans, it's a taboo to resolve to allow a human to die, particularly in the U.K. Saving a life, or, prolonging a death there is a huge difference on many levels. Old people in particular get tired of living, they can have their lives painfully drawn out by medicine, it's painful to see.

It's a topic worthy of discussion, if you'd like to discuss it, one place you can is your local death cafe:

https://deathcafe.com/c/United_Kingdom/

And there isn't a one cap fits all answer.

It's the ONLY certainty in life, that we, our loved ones, all of us WILL die... and no one seems to plan for it, it's nearly always a surprise!!!

After having sat all night with my wife and her family, watching and listening to her mother die after removal of all but palliative care I know for sure I would rather die at a time of my own choosing than let anyone suffer with me through a long death.

We don't let animals suffer as to do so would be considered cruel, why then do we not afford the same kindness to each other?

A dignified death if at all possible.

We watched our lovely elderly neighbour (the one I had to keep fixing the hedge trimmer wiring for) gradually fading.  A few years ago he had a UTI and Sepsis.  He was really diminished for want of a better term when he came out.  He knew it.

He had a heart problem, was on warfarin, frusemide and some other medications.  His ability was to get about was going.  He told us repeatedly he had had enough, it wasn't depression, more weariness, he had been on some great holidays, outlasted two wives and had some fun with some of the elderly ladies in our Close after this.  He wanted to go on his terms but no, he had to slide into that shitty condition, Dementia, suffer a large operation to sort out a hernia, endure a hospital related infection before going into a nice care home which hated.  We saw him the day before he died and it was gut wrenching to see the happy, full of banter, cheeky bloke reduce to babbling incoherence in a hospital bed begging to die.

So would you be in favour of active euthanasia in the dutch style?

Passive euthanasia upsets me in that it can take time to die although oddly enough dying of dehydration which is the usual outcome is not thought to be particularly unpleasant especially if painkillers and sedatives are given and a good standard of nursing care is performed

physician assisted suicide needs a person to be able to take active steps ie its no use to those in the end stages of motor neurone disease or dementia

Active euthanasia requires a doctor to commit a positive act - to deliberately end someones life

Look at the opposition to any steps down this road. The Liverpool care pathway was a codified way of ensuring best practice in end of life care. Melanie Phillips made it unusable in her newspaper columns and now we no longer have that best practice to follow relying instead on individual judgement which by their very nature is arbitrary.

Interesting listen with regards to the Dutch approach.

https://podcasts.google.com/?feed=aHR0cHM6Ly93d3cudGhlZ3VhcmRpYW4uY29tL25ld3Mvc2VyaWVzL3RoZS1hdWRpby1sb25nLXJlYWQvcG9kY2FzdC54bWw&episode=NWM1MDQ3NTVlNGIwMjRmMGVmZWIwYjgx

I'm all for it.

Watched my mum go through several bouts of chemo and essentially waste away over the course of a year.

In hindsight, it would have been better for her and selfishly the rest of us if nature was left to do its thing before all the chemo and uncertainty.

Well written TJ, personally I would get behind it.

1) Death is a bit taboo, it affects everyone but most people don't consider their future decrepit selves. Talking about it is not going to be a vote winner and therefore beyond the self interest of the current shitehawks in power. So well done for raising it.

2) You've given some very harrowing examples. However if implemented there will be tough cases where it's nowhere near as obvious that the prevention of suffering overrides all the other moral issues with suicide (these can be the classical religious "mortal sin" pish or secular).

https://www.google.com/amp/s/www.bbc.com/news/amp/world-europe-51103687

I'm interested in where you would draw the boundaries? It can be easy to get everyone to agree over an old person who is lucid but in extreme agony. Would mental health alone justify euthanasia? Does it matter if the person is 19 or 91? Etc

I was an ITU nurse for 20 years, I've seen a lot of people die.

The conversation that TJ alludes to needs to happen, but there will be a barrier from religious organisations, from the idiot 'newspapers' and others who will never allow people to choose for themselves.

It's your life, you should be able to choose how it ends.

There is also the conflict that we have seen in the various legal cases regarding children; I think this will increase in the future.

Having watched my mum die from metastatic cancer, complicated with diabetes and loads of other crap, I’m all for euthanasia. It would have saved her countless indignities.

If I’m given a similar diagnosis, I will be taking myself solo deep water diving.

Semi-ironically, mum was heavily involved in the local death cafe and spoke on the radio about it. She had her plan and everything sorted before she passed.

That link is not working for me Tomd

In the Netherlands there has been some borderline cases that on the surface look wrong. My sister is a journalist in the Netherlands and she tells me she looked into them and was happy once she looked below the surface

One case was a young woman ( teens? twenties?) who had been living with awful depression for many years. Requested euthanasia and it was granted. The other was an old woman who had many years prior stated that if she got severe dementia ( and went past laid down thresholds) she wanted to be euthanised. At the time of the euthanasia she was unable to consent again and in order to perform the euthanasia she had to be restrained.

there are also distinctions in active euthanasia - is it only at the patients wishes or can it be performed without the patients consent if they are unable to consent but are in intolerable suffering? for me that final one is a step to far I think

There was a case in recent years in the UK with a brain damaged child. IIRC tube fed but breathing unassisted but no hope of recovery. The parents fought hard to stop the withdrawal of treatment and won the case and took the child home. Those parents are now divorced and the child was cared for in a state funded institution. I do not know if they are still alive now.

How hard must that be for parents? the child could not give its view.

for many religious people its a mortal sin to suicide and for some even a DNACPR order is wrong - I know of this with muslim patients although I believe some senior Imams have now given a judgement that DNACPR is not a mortal sin.

Gray areas will exist in any system. How far are we prepared to go?

Edit - I got the link to work. Interesting stuff

Very apt timing. My 84 year old mum has been in a home for the last 3 years and has combined dementia. Her condition has deteriorated over the past two months and she is now unable to communicate other than the odd flicker of an eyeball when you stand directly in front of her and speak loudly to her. Her breathing is so shallow that I've often had to put my face against hers to check if she is still with us. My 86 year old dad makes the trip to see her every single day in the hope that he'll get some sort of response from her.

He convinces himself some days that he sees some crumb of improvement. He doesn't really. None of us do.

I worry about the toll this is taking on him too and he's gone from being a fit and active man to moping around on his own waiting to either go and see my mum or being completely down after a visit. In 3 years I don't think he's missed a single day other than when he had a cold. At the weekend mum deteriorated further after a chest infection. We were told to prepare for her to go into a hospice and to go into the end of life care pathway.

Today, although there has been no improvement whatsoever, she will be staying apt the care home. So on it goes and I hate myself for wanting it to come to an end.

By contrast, we had to have our cat put to sleep this weekend. she has had kidney failure for a few weeks and wasn't eating. It was heartbreaking, especially for my children. But we all knew it was the right thing to do. I know which one had the most dignified death.

My father died with assistance of the Liverpool pathway. I know this now but no one explained it to us at the time. It was only a few months later when it was in the news and it all sounded very familiar that I went back and asked. Got to confess it didn’t look or feel too marvelous at the time but I guess the alternative could have been worse. It saved him a couple of weeks of indignity he would have hated.

I’d like to think that when the time comes I’d take things into my own hands but I’m not sure how realistic that is. I’ve also witnessed so many oldies cling on to diminishing quality of life long past what I think they would have deemed worth it when they were fit and healthy. My wife’s grandad was the exception - he was ready to leave the world for at least two years and told everyone he wanted to die. It would have been far more humane to help him have his wish sooner.

I've a million stories to tell about this subject, most subject to issues of confidentiality, but a satisfying one was a man who knew he was dying, and who knew he had the capacity to decide when he'd had enough. I sat with him through the night and he chose that he didn't want anymore treatment at about 5 am.

I was asked to call his sister so he could see her, and I asked him if he wanted anything else.

'I'd really like some vodka and some ice cream, no bloody chance of that in here...'

So I spoke to his sister and told her what he wanted; she turned up 20 minutes later with vodka and his favourite ice cream. I was going off duty at 8 am and I don't eat ice cream but I did have a drink with him and wished him well, where ever he was going.

An under recognised part of this whole issue is the effect on the staff who deal with this every day; we/they have to go back and do it again, and again, and again and it takes its toll.
That's why I don't do it anymore...

Sorry it was this one from Belgium

https://www.bbc.com/news/world-europe-51322781

The "greater good" is a reasonable argument, as in allowing this will alleviate more suffering than it would cause. I agree with this.

Worth considering though that this assumes that you subscribe to some sort of consequentialist ethics, which not everyone does. Some people look at the world a different way, and don't accept the ends justify the means. An action is either right or wrong, regardless of the consequences (deontological ethics).

So this is why pinning down exactly when, why and how suicide is ok is really import and very hard to do.

Crickey - I have picked the tales I can tell very carefully for the same reasons - confidentiality. Perhaps one day when its all a bit longer in the past I will be able to tell more of them. I love the Vodka and ice cream one.

I left working in ITU because I did not like the prolonging of death that sometimes happened. One particular case broke me. I can still see his face 35 years later

Convert - the LCP did not shorten life. It merely codified best practice and gave standards to work within.

Tomd - there you get into some really interesting ethics. For me its about individual rights. I support anyones right to fight to the end and indeed have argued for people to have what I know to be futile treatment because that is what I knew they wanted. I see no reason why someone elses beliefs should dictate what I do but I do understand that for some to end life in any way is wrong - even DNACPR is sometimes viewed in this way.

One thing I have heard is that if you ask able bodied people would they want euthanasia if they became severely disabled almost all say yes. If you ask severely disabled people after they became disabled haveing previous lived normal lives most say no

I believe one of the threads TJ is alluding to is one of mine. This is definitely a subject close to me right now in any case so I won't type too much about it as it gets upsetting.

I 100% agree that we need to, nationally, have 'The Conversation' about it. Since medical science has made amazing progress in how to extend our skill in keeping people alive we've never stepped back and thought about whether it's the best thing to do. In some cases you could easily argue that intervening to keep someone alive is actually crueller than letting them succumb. Both sides of my family have a habit of living until 80-odd but almost all that have lived that long have needed lots of care to enable them to live a life rather than just existing. My dad is currently riddled with cancer at 80 and I get the horrible feeling that the treatment is just delaying the inevitable for no real gain. He spends his days just sat there watching TV as he has very little energy for much more, one small walk with the dog every day is about his limit. He's not getting any enjoyment out of this extra time, he is just adding extra days to his tally. Of course he always says he's happy but it is blatantly obvious it's a struggle for him. I know 100% that if I was in his situation and I had the option to choose my time to check out I would take it. Whether that's by lethal injection or just withdrawal of assistance is for us as a country to decide but we need to have a full and honest debate about it without histrionics from religious nutters etc, sadly that will never happen in this country.

A good death is something we all deserve to have. The questions are around what measures should we as medical professionals and lay people be able to take to ensure that is what happens.

Absolutely agree with this statement. We fight for our right to a good, productive life, it's about time we dealt with what happens at the end.

If someone is in pain, be it mental or physical and decides they’ve had enough then that should be it, case closed. It should be down to the individual to decide when to shuffle off this mortal coil. As one of my close friends once said “I’m not bothered about dying, I’m bothered about dying in pain”

I can think of nothing worse than wasting away, slowly losing my mind, becoming immobile, a burden on my loved ones and an already stretched health system or dealing with severe pain each day. The only shaky ground is with depression in my opinion. I’ve been to (and still go to) some very dark places due to suffering with it. I’m very glad I’m still here though the vast majority of the time.

I’m not great at getting thoughts and emotions articulated well. Basically I’m in favour and think it’s pretty pathetic in this day and age that it isn’t more commonplace.

An old woman who has decided her life is coming to and end ( its always women IME) She decided to stop eating and drinking ( “turning her head to the wall”) it takes a week or two to die

This was my Nan: she died yesterday. She made it to 100, living on her own in her own house and after being admitted to hospital a week or so ago with multiple organ failure and being told she wouldn’t be able to go home, decided she had enough. I would argue she still retained her dignity really well and good for her for choosing her time. If given the choice of a quick and painless injection I believe she would have taken it.

Thanks for raising the subject.

How you are treated at the end of your life depends very much on the medical team treating you and their views. there is no Gold standard or standard practice laid down

Unfortunately so true.

People need to be allowed to die well.

Slightly off topic, but this does bring to the front some difficult conversations, the way things can be done better, and we only get one chance to do it right

The law needs changed people should be able to choose euthanasia to suit their needs. I sat caring for Grandad for the best part of a week, at times he cried, begged and pleaded for me to put him out of his misery. This was a proud hard working farmer, a great family man.  he had capacity, he knew I was looking after him pretty much 24/7. He also knew the drugs he was receiving would do what he asked. It was hard watching him suffer knowing I could give him his wish. I never want to see anyone have to go through what he did, I know my mother will never get over how he died

I’ve witnessed professionally too and struggled to control their pain as not all pain relief works for those dying.

The law has to change and soon.

Fully behind it. If my dog has a better chance of a peaceful and humane death than I do, then something is just fundamentally wrong.

This ^^^

I was surprised that the Scottish assisted dying bill never made it to law. There seems to be support for it everywhere it is discussed, as there is in this thread.

The easy explanation is organised religion has too much influence on politics but there were other legitimate concerns too. How do you stop anyone feeling “it’s best they go because they are a burden” or any unscrupulous relative encouraging the decision to stop care costs eroding the inheritance. Any safeguard will always have the “what if” vulnerability - but then doing nothing encourages people to DIY poor “solutions”.

Interesting and challenging thread TJ.
We, as society, must be forced to address the issues you raise.
My Dad was home nursed by McMillan nurses until he died of carcinomatosis. For the last weeks of his life he was oblivious to what was happening around him; some sedation but not heavy duty.
I have no doubt that is not how he would have wished to die; his preference, I'm certain, would have been...my time is nearly up, end it now; he was a proud and great man.
As for my Mam, she outlived my Dad but every day she lived after his death killed her slowly but surely.
Dementia, loss of appetite followed by chest infection saw her off. From the day my Dad died she was living a lingering death; she often said she wanted to die first and resented the fact that she didn't.
Her children were married, she had grandchildren; she had given away any items of financial or sentimental value; she had deliberately shrunk her life and wanted it to end.
Back then, there were no options.
I wish I could say my parents both died with dignity.
As others above have said, we afford more dignified deaths to pets than people - usually old people.
The law must be changed.
This thread has, I'm sure, caused a few tears.

Interesting stuff folks. I was expecting this to be much more controversial.

How do you stop anyone feeling “it’s best they go because they are a burden” or any unscrupulous relative encouraging the decision to stop care costs eroding the inheritance.

Places where this is legal this does not seem to be an issue because of the safeguards built in. " not wanting to be a burden" is IME usually actually " not wanting to linger in this state" but people put it in selfless terms rather than selfish.
On coercion - again IIRC and different countries use different safeguards but that is up to individual doctors at the time of making the decision. Its certainly trickier with vulnerable people but I know of no disputes where it would seem coercion has been evident.

Two doctors involved and the decision made and then checked at a later point seems to work.

You would of course need moral / religious exemptions for medical staff as we have over abortion

My mum watched my father die of lung cancer in 1976, worked in a hospice for years, became a MacMillan Nurse, looked after my step dad who died of a brain tumour, she thinks assisted suicide should be legal. I'll go with her experience.

Problem is I dont trust the politicians to get the legislation right, and the religious nutters would need to be mollified.

What I would say is that a sizeable majority of "religious" people would probably support this as well, it's a vocal minority who are holding it up.

Mum turned her face to the wall in 2000 and died 2 days before dad's 60th birthday. She was 'fortunate' that her brain stem cancer had returned and she lasted around a week after refusing medication.

By comparison our dog is scheduled for euthanasia on Friday as his heart is all but finished due to DCM.

I now which is my preference.

I'm "fortunate" that most relatives I've lost as a result of protracted illnesses were when I was younger and at the opposite end of the country so visits were infrequent. My Dad went immediately as a result of an unexpected heart attack.

When I was sitting with my uncle at my nan's wake (down in Wales where open coffins at home were still normal c30years ago) he was theorising that we seemed to be the opposite of the Victorians- they were happy to talk about death but sex was taboo. He also thought that softening lives (ie less risky manual work, reduced armed conflict) and the NHS took death away from our doorsteps so it was something that became less frequent and discussed in our daily lives.

A close family member is opting for the dignitas route and will probably make the trip to Europe this year with their partner and children. Its worth reading up on the process on the dignitas website, whatever happens the "client" has to be capable of taking the drugs unassisted which leaves people in a catch 22 of either going earlier than they really want to or risking not being able to take the drugs personally and so not being able to depart this world before they degenerate in the case of progressive diseases.
They've not told all their family yet so posted under second login and probably won't be back on this thread as its too upsetting for me.

TJ - I should perhaps emphasise that I am generally in favour. But I think if we dismiss the "problems" that designing in safeguards have, we make it very difficult for the legislation to pass because the objectors can simply point to a loophole that lets people "get away with murder".

Places where this is legal this does not seem to be an issue because of the safeguards built in.

not seem to be, and not being are different things. The "victim" of any system that enables "premature" euthanasia is of course unable to complain. Suggesting that other countries safeguards seem good enough, could be like suggesting that child protection in 1960's children's homes seemed to be adequate at the time!

” not wanting to be a burden” is IME usually actually ” not wanting to linger in this state” but people put it in selfless terms rather than selfish.

Maybe, and especially for the "older" people you are thinking of in the OP, but generally the legislation would allow anyone regardless of age - and there may well be a small number of people who feel guilt for the burden their condition will place on a loved one for many years or even decades who may wish to "go". Getting the legislation right means getting it right so those people aren't making the wrong decision, without simply putting exclusions in place that restrict access to those who need it.

On coercion – again IIRC and different countries use different safeguards but that is up to individual doctors at the time of making the decision.

The fact that different countries use different approaches tells you something about the complexity of that point. If you want this to happen you need to reduce the burden on medical professionals to be making the choice. Not least because that introduces a variable and possible weakness into the system, but because they rightly should have a strong voice during the legislative process and IME many are not keen to be placed in a position where they have to make these decisions.

Its certainly trickier with vulnerable people but I know of no disputes where it would seem coercion has been evident.

How would such a situation come to light?
The biggest issues, is many of us would wish to agree now that in certain circumstances we should be allowed to go - but most legislation, understandably, requires active consent at the time.

Two doctors involved and the decision made and then checked at a later point seems to work.

Certainly you can design processes to mitigate the risks. E.g. the Scottish Bill had a 14 day cooling off period, and two different doctors involved, as well as an initial declaration - and the person who facilitates the end having no previous involvement with the patient. I'm not suggesting that these problems don't exist with current decisions around treatment (both withholding and prolonging). The first Scottish attempt required 2 psychiatric reports on capacity, the second did not require any (but doctors were expected to fulfil this assessment)...

You would of course need moral / religious exemptions for medical staff as we have over abortion

Its not that long ago that this exemption was considered under threat. If I were a medical professional who objected to the idea of being personally involved in assisted dying, I can see why it would be difficult to support it if I was concerned I might eventually be obligated to be part of the process. That might be especially difficult for GPs (especially in rural areas) where they are the point of contact with the system and the sign post to other services. Even without signing the paperwork or administering the drug just arranging for someone to see the specialist that would do it would cause some to feel uneasy. As I recall the draft bill in Scotland did not include a conscientious objector clause.

To be clear again. I'm a supporter. But there are issues to overcome - simply because other countries have a process doesn't mean they have necessarily overcome them.

Thanks TJ

My dads death was drawn out and dreadful and I truly hope I’m offered a more pleasant exit.

As I understand it the best we can do just now is as per TJs original post

DNACPR – do not attempt cardio pulmonary resuscitation. An instruction that in the event of a cardiac arrest that medical / ambulance staff do not do CPR. This should always be decided in discussions with the person and / or their family. All other medical investigations and treatments should be given / continued

DNACPR with advanced care plan ( ACP) – This would limit treatments given ie no surgery or no IV antibiotics or “comfort” measures only. Again should always be done in discussions with the patient and / or family

So in light of where I think we are on this I’m currently doing an Advanced Declaration and an Advanced Statement, which I’ve been asked to do by my partners daughter(nurse) so that my wishes are documented and available to others if things go wrong and before it’s too late.

See for more info. https://compassionindying.org.uk/

Below is an extract from my Advanced Decision statement

As we now seem to be allowed to identify as male or female, at the end I would like to identify as a dog, that way I think I will have a much better chance of a good and sensible death.

I’m a supporter of the active euthanasia option.
Both of my grandmothers didn’t have the a dignified end. One in particular was kept alive for a few years post stroke when it was obvious there was absolutely zero quality of life. Tbh the cynic in me thought the care home was keeping her for financial reasons .
I eventually persuaded my grandad that maybe it wasn’t fair on my nana to be fed through a tube and he should let her go.
Fairly quickly after that the care home followed the Liverpool pathway and I suspect ,a hefty dose of opiates.
Sounds really horrible to say it and write it down but I was glad her suffering was over.

Poly - I have no issue with your post at all. These things need to be discussed.

With regard to vulnerable people - if you cannot consent fully then you cannot be a part of this. thats pretty much a given

Of course rigorous safeguards are needed and if that means some people could not avail themselves of the provisions then so be it. Its my view having known the dutch system in action and having discussed this with dutch citizens is that the safeguards are sufficient.

How would such a situation come to light?

The objectors would be all over it like a rash.

If you want this to happen you need to reduce the burden on medical professionals to be making the choice. Not least because that introduces a variable and possible weakness into the system, but because they rightly should have a strong voice during the legislative process and IME many are not keen to be placed in a position where they have to make these decisions.

I quite agree. It should not be medical professionals making the choice. It shuld be the person themselves. As things stand our current legal position does put difficult and perhaps intolerable burdens on medical professionals. You have to initiate the conversation about end of life care and guide people even sometimes over ride their wishes. I actually think a better framework for end of life care would reduce not increase these burdens.

Please - keep on picking holes - its needs to be done and I for one and mot objective enough to do so. A bit more specific would help me to answer them tho
. I do not have all the answers mind you - or no monopoly on them

IMO people can die however they wish because that is their life.

Therefore, it is their decision and rights.

In our belief a person death must not inconvenient others or cause harm to people around them. i.e. left debts, not sorting out inheritance etc ... Also if the death is the result of self intention i.e. "suicide", then we would persuade them to "hang on" no matter how hard it can be until they die (especially those with medical conditions). However, if the death is the result of a medical advice then that is fine. i.e. doctor switch off machine etc. The logic is that death must not be decided by self but to let the karma takes it course.

The average age on this forum means that many if not most of us will have experience close up of the realities, which even with a 'good death' (at home, surrounded by family, largely comfortable) are not pleasant, especially in the week or so before the morphine pump gets started up. Frankly if that could just be fast forwarded for those who want it it would be doing a considerable kindness, and respect for dignity.

(It's the total normality of this stuff gets me, it's like having kids or whatever, a huge big deal when it's you but what could be more normal than 'old person dies'? Anything that makes it less horrible is fine by me. And that's having at one point had a 'family member giving end of life care' hospital car park pass, said family member being on an end of life care pathway. Then the bugger woke up...)

But in the interest of stirring some controversy, where are out medically qualified posters? The one's who'd be at the sharp end of decisions,who's personal contacts and access to drugs mean that they as individuals are likely to have the means to short-circuit the bitter end, but who via the BMA at least fail to support assisted dying...

The average age on this forum means that many if not most of us will have experience close up of the realities, which even with a ‘good death’ (at home, surrounded by family, largely comfortable) are not pleasant, especially in the week or so before the morphine pump gets started up

My cousin's husband passed away two weeks ago. He fell down at home (may be knocked his head) and was taken to the hospital. Blood pressure drop below 50. Stayed in hospital for 3 to 4 days. When his bloody pressure started to go up to about normal level, they thought he was fine and was preparing to discharge him the next day. But all of a sudden the night before his blood pressured suddenly started to drop again until he passed away in his sleep. He was in his mid 50s.

said family member being on an end of life care pathway. Then the bugger woke up…)

I have had this happen many times. Call the family in, have "the conversation" then the bugger sits up and demands a cuppa!

I remember clearly as a teenager visiting my Grandfather in a hospice (Phyllis Tuckwell Farnham) many years ago, its something that has stayed in my mind, seeing a very active strong willed man drifting into hopelessness and despair. It repeated itself recently as my stepfather, who opting for home care, spent the last 8 months of his life bed bound and dependent on others, it was not seeing not so much the physical effect of multiple cancers on him over that time but the mental anguish he was suffering, being a very independent and proud man, basically kept alive by some great visiting nurses but also family. I ended up going back to the UK 4 times over this period, not only to enjoy some more time with him before he went but to also allow some respite to mum who is getting on a little herself and was struggling a little to cope with the situation.
I can understand there are some pretty difficult legal issues for the UK law makers to perhaps shy away from the Dutch approach but based on my own experience, and most of I have read so far, its a struggle to understand why a pet rabbit would be allowed an better way out than myself if it came to it.

Applaud you tj for starting a thread on such an important though difficult topic. I did see it last night but after (yet another) tearful phone call from my daughter thought it best not to respond until the morning.

Regrettably my children's father was misdiagnosed for years and it has meant a lost opportunity as it were for a visit to Switzerland which he undoubtedly would have wanted. Instead a proud Scot in his 60's is 'living' in a nursing home due to a rare, progressive and untreatable disease, needing personal care and unable to communicate. He is also thoroughly miserable. It's a lovely nursing home and so it should be due to the extortionate fees he's having to pay.

Things have to change and very much agree with you that we need humane laws in this country. Personally I'll be deciding for myself when the time is right, it's my decision alone and nothing to do with the state.

Passive Euthanasia – this is the stopping of life saving / prolonging treatment ie turning off ventilators or withdrawing tube feeding. If the person is “brain dead” which there is a series of tests for then this is a straightforward decision ( usually will apply only to ventilation)

I’m not sure I’d consider withdrawal of life support in best interests to be ‘passive euthanasia’; it’s much more about stopping distressing and non-beneficial treatments, and prioritising comfort. I guess the difference is intent.

The decision to withdraw life support is never taken lightly, and in my practice involves discussion with the patient’s family and usually a second opinion from a colleague.

Also, where someone is declared dead by neurological criteria they are dead, and as such, withdrawing ventilation cannot be considered euthenasia by any interpretation.

I think Atul Gawande’s book (Being Mortal) is worth a read.

DOI consultant intensivist.

I’m a supporter. But there are issues to overcome

Put me in this camp as well. I work with many clinicians for whom this would present them with ethical /moral dilemmas , and no TJ they're not all religious.

This sort of thing is loaded to the gunwales with unintended consequences .

Yes I am also in approval of dying with dignity with assistance if need be.

My own father’s early demise from cancer … near the end he was just a shell, just breathing and occasionally responding but not talking.

Myself and 2 siblings, all adults, had travelled up to visit, together with my mum and my dad’s mother in the house for several days effectively waiting for him to die. The GP visited and we were all the in the room, GP leans in to my dad and asks him if he wants to sleep, my dad didn’t respond, GP says ‘ok then’ … gives the morphine driver a couple of pushes and off my Dad goes. We were all complicit in what went on and none of us complained. I was 24 at the time and it was a stark wake up to adulthood and the things that go on. So yes it seems to me assisted dying is illegal but does happen.

NickC, could I ask please for some examples to further open up our debate and help inform more of us where the more difficult problems are?
This is an incredibly difficult area to get the correct balance and I hope we can maintain a sensible level of respect throughout, whatever views are expressed.

Convert – the LCP did not shorten life. It merely codified best practice and gave standards to work within.

Yes, I am probably conflating two issues together. He had terminal cancer and we (not, him - he refused to asked the question so we got the information from the consultant over the phone) had had the 'weeks or at best a couple of months' conversation. He then had a brain aneurysm and was blue lighted to hospital and put on a LCP rather than any attempt to treat the aneurysm and prolong life any further. He'd driven back from Skye to home near Inverness earlier that day so whilst very terminal up until the aneurysm he had a semi-reasonable quality of life. He went from watching the sunrise over Skye in an airbnb to dead via LCP in less than 48hrs. The only thing that was missing (in hindsight) was any explicit conversation with the family telling us it was hopeless and they were managing him a pain free exit. We knew it of course but it was all a bit nudge nudge wink wink and implied conversions. It would be interesting to know now if the morphine levels were cranked up beyond necessary to speed things up. Again - we'd have probably agreed.

All said and done if you have to die at 60 from something as horrible as lung cancer with some rather nasty secondaries he got a reasonable ending, eeking out life long enough to become a grandad and a couple of other big life events with a rapid demise.

NickC, could I ask please for some examples to further open up our debate and help inform more of us where the more difficult problems are?

About eighteen months  ago, we were told that  a good friend who had stage 4 liver cancer was in the local hospice and was extremely unlilkely to last the night. He had the conversation with his wife and the medical staff  that he just wanted to go and, if it had been an option, they  would have let him.

He did last the night. He lasted another eighteen months and went through a period of remission during which he spent some quality time with his two kids that he perhaps would have been denied if the options were different at the time. It's not always black  and white.

We buried him on Monday and the dignity with which his 14 year old son carried his Dad's coffin  will live with me for a long time.

ratherbeintobago

My post was long enough without trying to go into all the ramifications so apologies if it was misleading. I did try to differentiate between those brain dead and those not. Perhaps I should have been clearer. apologies.

Clearly you have good knowledge and experience in the area - anything you can share?

How you are treated at the end of your life depends very much on the medical team treating you and their views. there is no Gold standard or standard practice laid down

I've said this on another thread I think. I was with my Dad when he died, which was a harrowing experience in itself but made so much better by the fact my mum and aunty have both been nurses so knew how to care for him and speak with healthcare staff in attendance. Even more so, a family friend was (still is) something like a palliative care community nurse and was able to give a final big hit of morphine to see him off sooner rather than later. I genuinely fear for my end of life scenario being similar but without that level of care.

@tjagain Not sure I can add much, there are a lot of good insights/stories on here already.

I do recommend the Gawande book highly, though.

Thats an interesting one @perchypanther. I guess you think if you friend could have had euthanasia he would have done 18 months early?

Thats certainly one aspect I had not thought of

nickc - care to add more? I am interested in aspects I may not have thought of

Since starting this I have wondered if I could do it. I think I could but until placed in that situation I can not be sure. I have given someone their final dose of painkillers and also persuaded a consultant to move to palliation rather than cure in approach to a patient. However in both of those cases I am not making the decision but "merely following orders" or giving my point of view - albeit forcefully. Again I still can see the faces of some of the patients where the dilemmas have been most obvious

Would allowing the patient to make the decisions if possible reduce that moral dilemma? In some of the cases that I still think about the patient was not able to make the call at that time

I guess you think if you friend could have had euthanasia he would have done 18 months early?

That’s what he told me. He would have pressed the button if there was one.

In retrospect,  he was glad he couldn’t.

The point was that the medical staff had no certainty of his survival at that point so they weren’t any better informed, in the moment, than he was.

@highlandman In no particular order.

Most doctors would agree that part of their job to help people die in as much comfort and dignity as they can, assisting someone to take their own life is a different thing altogether and strikes (for some doctors) not just as amoral for doctors but amoral for all.

The slippery slope. Once you allow assisted suicide for one person where do you stop...would it be better for some disabled folk who are so reliant on others that they cannot survive without 24 hour care to be consulted about  it , or how about when they are children to end a life of potential suffering?

Liability. All clinicians need to have indemnity, they have this through mutal defence organisations who will defend them against claims, complaints, inquests, regulatory bodies...I'm going to suggest that there organisations are not going to be in a rush to risk analysis the outcome of a claim against a doctor for manslaughter from an unhappy relative, I'd hate to think what costs the defence unions would impose on a clinician to protect him from such cases tied into that is also vicarious liability. What if your consultant asks you as a trainee (for example) to attend an assistance and it goes wrong,who's fault is that

The slippery slope argument you make there. Children - nope unless they are "Gillick competent" and with even more scrutiny of this. Disabled - again competency is the key

I am only talking about granting euthanasia for those who want it and can make a competent decision to do so. This obviously leaves out those with severe dementia ( unless perhaps advance statements are used?) and similar conditions where competency is not there

I will look into other countries and ponder this and your other points more but I do not think this has been an issue in other countries

Thanks folk for the thoughtful debate

I now realise that I do not have enough knowledge to make the arguments and thru this I have tried to ask questions rather than give glib answers.

Clearly I need some more reading on the practicalities of how it is done in other nations.

thanks

@tjagain

With regard to vulnerable people – if you cannot consent fully then you cannot be a part of this. thats pretty much a given

Of course rigorous safeguards are needed and if that means some people could not avail themselves of the provisions then so be it.

I get entirely what you are saying, and I probably subscribe to the "better some people can choose than nobody" position, but defining correctly which group get that choice is no trivial exercise. I have two relatives with significant dementia. Neither would be able to consent. If I found myself in their condition I'd want someone to be able to take a sensible decision. I suspect that many people in favour of Euthanasia imagine exactly that sort of situation. Mostly that is not an option; people talk about advance declarations. Yet we all too frequently make comparisons to animals:

I can understand there are some pretty difficult legal issues for the UK law makers to perhaps shy away from the Dutch approach but based on my own experience, and most of I have read so far, its a struggle to understand why a pet rabbit would be allowed an better way out than myself if it came to it.

but of course the animal can not consent. The odd thing is by requiring active consent it potentially encourages earlier decisions to be made.

TJ - have a read of the Scottish parliament commentary on the assisted suicide bill. It highlights some of the challenges,

This thread has caused me quite a few tears while trying to read it.
Events over the last 21 years have made me take a hard look at my own mortality and an end to my life.
1998 my father died (61) from bone cancer, it was prolonged more than he wished but my step mother was terrified of losing him so continued treatment, I don't judge her as non of us know what we would do in the situation.
But to see your father at 9st from 17st being craned up to have his nappy changed is not an edifying sight.

2017 my mother (73) is in advanced treatment for bone cancer and says enough is enough and stops treatment, she died under sedation holding my hand.

3 months later my step mother (86) died in front of me in a nursing home while talking about her childhood (heart attack)

2019 My wife (52) died from aspiration pneumonia (she had secondary progressive Multiple Sclerosis) 7 weeks in hospital with 2 attempts to fit a PEG feeding tube neither worked.
She got weaker & weaker following various lung collapsing events and on the 6th of Sept the medical team asked my permission to withdraw treatment and give sedation and pain relief.
She died on the 10th Sept as far as I could tell peacefully.

I'm not sure what the point of my typing is but I would just like to thank TJ for opening the debate.

Podcast from the Guardian about the subject.....

https://podcasts.google.com/?feed=aHR0cHM6Ly93d3cudGhlZ3VhcmRpYW4uY29tL25ld3Mvc2VyaWVzL3RoZS1hdWRpby1sb25nLXJlYWQvcG9kY2FzdC54bWw&episode=NWM1MDQ3NTVlNGIwMjRmMGVmZWIwYjgx

Having witnessed my amazing Mums last 72 hrs of MND it confirmed my thoughts on this matter. To this end, despite being only 49 and in good health, I intend to thouroughly research the subject of ending my own life if the need arises and I am capable. physically and mentally.

Just 7 days later I found myself in A&E with my Dad and had no issue telling the doctor that my Dad (and I) agreed with his prognosis that if condition worsened again then it was a no to CPR, etc. My Dad has made this easy for me by making it clear previously both verbally and on paper.

Is there any reason (other than cost) that we couldn't register a yes or no for euthanasia each year in the same way that fill in those voting forms all the time? This way we would build up a body of evidence to protect us once we get old.

As for feeling like a burden, I don't want my boy wasting his precious life visiting me if I get dementia and don't know who he is.

I watched my Mum die this evening. Just over three years after being admitted into a care home with combined dementia. The staff were wonderful and I am moved to tears by their kindness shown over the past four days.
RIP mum.

Bregante, my thoughts are with you: I've been there.
RIP to your mum and take care of yourself.

Sorry to hear that bregante, nowt can be said to make it any easier on yourself apart from the fact that i along with my mum and bro went through the same with my father last october after a very quick deterioration caused by myelodysplasia and the ****ing useless diagnoses/treatment by dumfries hospital. Good to hear that the care home staff were supportive as that can make all the difference even when the outcome is only going to go one way.

And as for T-J's original post?, i have secondary progressive ms with multiple lesions in my brain, brain stem, spinal cord which is a ****er, it went undiagnosed for the previous 20yrs thanks to a useless neurological team at the queen elizabeth spinal hospital who blamed all the issues i continually raised on a yearly basis for the previous 20yrs as due to spinal cord damage i suffered back in 1991 at age 19 where i broke my spine in multiple places, from which i made a pretty remarkable recovery after multiple surgeries. In 2018 i eventually kicked off with the spinal team and backed the consultant into a corner (literally, with hand round throat) and demanded a second opinion, on seeing a second opinion i was immediately diagnosed as having MS and sent for various MRI scans, due to the non diagnoses/non treatment over the previous 20+years with disease modifying drugs which would have slowed down/stopped the progression it had done its damage and had progressed to aggressive secondary progressive MS and i'm currently going downhill very fast (but not on a bike anymore), I can stand up if i hold onto something and lock my knees backwards but walking is out of the question, i can ride a bafang equipped e-bike conversion with a thumb throttle as my legs no longer go round/work and if i come to a stop id better be near enough to a wall or something to hold onto otherwise i fall off and its amusing to try and climb back on.
Other issues are muscle spasms/muscle tone screwing me up into a ball,aches/pains in every bone/muscle etc..etc, prob too many issues to mention really and i can't be arsed to list them.
Anyway I've got my exit planned and pretty much sorted, I'm allowing things to go so far then when i can no longer look after myself or need help to exist on a day to day basis then I'm taking my "exit" which will be the purest afghan heroin that I've got sitting here in a jewellery box, there's no way I'm waiting on the ms to cause my lungs to fail or for bed sores to kill me through infection.

soma, I don't know what to say other than....my thoughts are with you.

I plan to have a Deathday. I have a Birthday, I’ll just have another day at the end, except it’ll be a one off. There are certain conditions which are both necessary and sufficient to deem when I’ll have my deathday.

I would very much like the choice as to what I use to celebrate this day, unfortunately my choices are limited.

This needs to change, there’s only so much insulin or gbl/ghb one can stockpile.

Very poignant thread - thanks folks.

My 94 year old grandfather is currently very close to the end. He's generally been fit and well for 93 1/2 of those years, living on his own (albeit in sheltered accommodation) until a fortnight ago. He's got lung cancer and the prognosis is rapid deterioration. He's not smoked since the 70s, and even then not much, so it all feels a bit cruel. A big heart attack in his sleep would have been so much kinder.

He's now in a residential home with full time nursing care, basically off his tits on morphine and quite distressed at times. But he knows what's coming and is at peace with it. The difference from 2 weeks ago when he was coherent, sharp and funny... I'm going to miss him like hell but just wish there was a more dignified choice for him

Soma and Bregante - my thoughts are with you both. Please don’t see the remainder of my post in any way undermining the gravitas of what you’re going through.

In response to the thread, I totally agree that it should be a persons choice as to whether they continue living. Especially in a society where choice (to an extent) is fought for, it seems at odds that you shouldn’t be allowed to make the ultimate choice for yourself.

To me, I think the grey area is mental health. Please bear with - this is not to make this thread all about me. For as long as I can remember I’ve not been bothered about living and certainly in the past couple of years, if there’d been a button I could have pressed I would have. I’m (relatively) fit and healthy physically, but I’m miserable and just tired of life. I’ve not done the act as I’m a bit of a coward when it comes to pain and the worry of putting myself in a vegetive state terrifies me if it doesn’t go to plan. Obviously my family wouldn’t want me to do it (sibling and parents only - I’m not married and no kids), but I can’t see the point and am left in a numb state where the thought of ending it fills me with a bit of peace.

On the above basis should I be entitled to end my life if I want to in a controlled and effective manner? I think I should - I’ve have multiple counselling and anti-depressants and nothing has ‘fixed’ me. If what I want is to just end it, even if it means paying for it, then why can’t I?

Please note I’m in no way comparing it to the others mentioned in this thread with serious medical conditions, I can’t imagine the pain involved for both the patient and their family. My point is merely around the choice in dying.

Hadn't seen this post until this morning, my thoughts:

The poster who knew someone who said he'd want to go early but ended up with another 18 months, my opinion is that every choice we make is a gamble, to me, he had luck on his side, there will be others who did not and did not get 18 months and may have suffered

As others have said, I cant believe a pet can have a more dignified death than I can. Both grandparents on my mums side and one on my fathers side have suffered with dementia, watching them go from strong independent people to bed bound shells was tough. I think something needs introducing, yes there are grey areas, but introduce sooner for those clearer cases and develop the laws as we go for the more complicated scenarios.

Eloquently put @flange, I share your sentiments entirely.

I haven't read all the thread in detail and may have missed it but was surprised "Exit International " wasn't mentioned. I intend to have their information at hand if I wish to determine my own departure for whatever reason.

I am bumping this because tomorrow an assisted dying bill is going before the scottish government. I urge you all to write to your MSPs in support.

Given recent events this is even more pertinent to me now. I have done a series of media interviews

If the provisions in this bill had been law my Julie could have and would have had a better death

https://www.bbc.co.uk/news/uk-scotland-scotland-politics-57541231

To have a comfortable and dignified death is positive. What is more important to me first, is dignity in life. We still seem to vote in governments that don’t even do that.

Thanks for bumping this TJ, as you know it's close to my heart, hope the scottish parliament can get the ball rolling across the UK.

Sadly not in Scotland so can't offer practical support, but I can't believe that I was able to ensure our guinea pigs can go peacefully and without suffering, but I couldn't have the same.

The law as it stands is a mess. I have a family member who had to go through all the police questioning when their husband (very aggressive cancer of throat and tongue) bought poison to end his own life at home, and had told her when he was going to do so to allow her to prepare as best she could. Having advance notice of his intentions put her in an awful legal position, even though it was the right thing for him to do (in my opinion).

You’re doing good work TJ. And at a difficult time. Thank you.

You’re doing good work TJ. And at a difficult time. Thank you.

This.

My own recent experience of this leads me to think that Euthanasia is a good thing, but there has to be some protection against people feeling 'forced' to end their life early.

In my instance, my relative would have made the decision earlier than I would have. One of the quoted reasons would probably have been to "protect the inheritance". In my case, this was not really that relevant, but would have been painful to hear and think about after their death.

However, what if the relatives family is under financial strain and pressurise the patient (intentionally, or not)?

I don't have an answer myself, but I can see the issue. I need to investigate Dignitas soon while I can so that my family have the answers before the questions are asked.

PS - I am also not in Scotland so can't help directly with the request.

As a school cleaner I'm probably not best placed to add much that's erudite to this thread, but I will say that I've always been in favour of assisted euthanasia (I think I fear suffering much more than death).

Gone are the days that those who attempted suicide awoke in hospital to find police at the foot of the bed waiting to arrest them; suicide is a right that we all have and it makes sense to me that someone who is physically unable to enact this, but competent to make the decision, could legally ask another to assist. I do recognise that legislating for this will be a nightmare and that there will be many who object for a variety of deeply felt reasons.

I haven't read every post in detail but something I don't think has been covered (unless I've missed it) is the protection of carers/loved ones.

There was a gentleman who was regularly on the news some years back (to my shame I forget his name) fighting and loosing court cases around assisted dying; I think that he may have had MND.

He was profoundly unwell and recognised that he would reach a point where his life would be insufferable but where he would be unable to end his own life.

If I recall correctly his main motivation was an understanding that his wife, who loved him dearly, would (in the absence of a legal route) assist him in dying whilst running the risk of criminalisation and potentially spending decades in prison as a 'murderer' for what might be seen as the ultimate expression of love.

I may be wrong but I think that prosecution of someone involved in a mercy killing is dependant on the decisions of individual police forces. The lack of legal route to assisted dying can push loved ones in impossible positions.