Dignity in Dying

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, http://www.parliament.scot/ResearchBriefingsAndFactsheets/S4/SB_15-02_Assisted_Suicide_Scotland_Bill.pdf

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 **** 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 ****, 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.