Right to die versus duty to fight for life
Eliab
Shipmate
in Epiphanies
I had a stroke two years ago. I was not expected to live, or if I did I was not expected to retain the ability to think coherently, and to have no quality of life.
I met other people during my (nearly two year) rehabilitation who’d had strokes or brain injuries who were not so fortunate. And I well understand someone saying that they would rather not be kept alive in kept alive in such a state. Only that isn’t me. I would always rather live. I would consider if a sin to choose death over life.
My doctors, to whom I owe my life, tried hard to persuade my wife to turn off the life support, on grounds that I’d have no quality of life. They were acting what they thought were was my best interests. My wife said no. That we had talked about end-of-life issues and that I would want to live regardless of quality of life.
She was right. She would still have been right even if doctors were also right in their predictions.
But mine is an unusual view. It shouldn’t be compulsory for anyone else to agree with me. I fully support the right to choose to die, even though I myself would never make that choice.
Do you agree? What safeguards should be in place to ensure that it’s genuine choice? And do your loved-ones know what you would want them to do in similar circumstances?
I met other people during my (nearly two year) rehabilitation who’d had strokes or brain injuries who were not so fortunate. And I well understand someone saying that they would rather not be kept alive in kept alive in such a state. Only that isn’t me. I would always rather live. I would consider if a sin to choose death over life.
My doctors, to whom I owe my life, tried hard to persuade my wife to turn off the life support, on grounds that I’d have no quality of life. They were acting what they thought were was my best interests. My wife said no. That we had talked about end-of-life issues and that I would want to live regardless of quality of life.
She was right. She would still have been right even if doctors were also right in their predictions.
But mine is an unusual view. It shouldn’t be compulsory for anyone else to agree with me. I fully support the right to choose to die, even though I myself would never make that choice.
Do you agree? What safeguards should be in place to ensure that it’s genuine choice? And do your loved-ones know what you would want them to do in similar circumstances?
Comments
It is also possible to discuss the sometimes-disastrous cost of end-of-life care, but that is a different issue, I think, from the OP's concern.
We really should write it down as a statement of wishes, sign it and have it witnessed, but I wonder how many of us do - and afaik the family can override it in any case.
I think one needs to think through ALL the scenarios in so far as possible. And I've warned him, so he knows where my tolerance lies, and had better not be dying from an easily reversible problem in my presence.
Back in 2015, when I was diagnosed with a brain tumour, the consultant warned me of the possible results of surgery (the only way of dealing with the thing):
1. Death (no problem - nothing for me to worry about)
2. A stroke (possible problem, of course, if I was left incapacitated or in a vegetative state)
3. Partial recovery (which is what happened)
4. Total recovery (not quite...but I'm still warm and breathing!)
I made suitable arrangements for 1 by making my will, and 3 was taken care of with the help of Three Kind Friends. but it never occurred to me to deal with 2.
Doublethink, Admin
This is not a legal document in NSW (the Queensland one is and must be followed) and hospitals need to be made aware of its existence. An important part of the ACD is the discussion with family about what the person wants, and for some realising that it is what the person wants and not what the family wants takes the burden of the responsibility of decision making away.
ACDs need to be revisited from time to time as circumstances can change, e.g. the person wants to be around for the wedding or birth of a family member.
I understand that medical outcomes can differ from prognoses, so while some may want to follow the most likely outcome according to medical expertise, others prefer another course.
But maybe after all, this is merely one of those serendipitous moments, something that can nudge a conversation that needs to happen between Mr Alba and myself sometime very soon indeed.
This last week just gone, we sat with a neurosurgeon who spelled out in exquisite detail exactly what @Bishops Finger experienced. And I have to say it sobers one up swiftly.
Of course during the appointment it was all about how we moved on from this situation, options that are no longer available , the various specialists that have to be seen before la, la, la… but I have to admit that facing our Very long list of possible outcomes focussed the mind somewhat.
Walking back to the car park I found myself wondering how to approach What Was Not talked about. Will it come up in further appointments? Shall I bring it up?
Will they raise the topic? And of course, how on Earth am I going to raise this with Mr Alba, a man not given to conversations covering all eventualities…. Of Anything. Much less this.
Long ago and far away I wanted to live to 100 and my offspring were all annually reminded of this. But having watched my mother’s slow decline last year, I’m having second thoughts.
I do not consider it a sin to prefer to loose my life on the operating table, rather than be caught up in a locked-in situation.
Others may have differing opinions.
There is nothing that anyone can say here that will upset, alarm , confuse me or make me angry-so go for it!
Your words might make a Monday conversation go well.
And what if one doesn't want very much medical care? I know that my mother brought up the conversation because she emphatically does not want too much medical care. Is it okay to say I'd rather die on the operating table than here, but I don't want too much medical care, so I'll just choose to go?
So I would be prepared for the event that the specialists do not bring up anything beyond their medical speciality and the success of that independent of how the situation has gone for the whole person.
Some years ago I was introduced to oncotalk, which was training for oncologists to talk about these matters to their patients. This was replaced by vitaltalk, which was for a wider specialist audience, and I understand that there have been other ****talk spinoffs.
They had a number of brief video interactions between specialist and patients. The one that was most significant from my chaplaincy perspective was asking the patient what they wanted from the rest of their life, as it took the focus away from an unlikely cure, or achieving the longest possible life regardless of its quality, as the aim.
(Amongst other things, my mother’s discharge paperwork showed that a do not resuscitate instruction had been put on her notes - at a time when she was not capacitous - and this had not been discussed with any of our family.)
When with the Ambulance Service, it was sometimes my task to transport terminally ill patients (maybe to hospice, or even back home), and I always discreetly asked if there was a DNR or DNAR ticket to hand.
On more than one occasion, family members had no idea what I meant, and, where there was no such instruction, were distressed to think that there might be circumstances where resuscitation was not going to be of any benefit. Dealing with these people took a great deal of the rather limited tact I possess...but not everyone is able or willing to face with equanimity the death of someone they love - or even (and perhaps more especially) their own death.
@LatchKeyKid makes some pertinent points in his latest post (above).
Difficult memories of dear friend who succumbed to motor neurone disease 10 years ago; her agony prolonged by a combination of inexperienced hospice staff ( great at terminal cancer not so good at end stage neurogenerative disease- probably fearful of being accused of knocking her off prematurely)
and family in denial. Her end was painful and needlessly protracted.
Currently seeing an old friend through final journey ( recurrent aggressive oesophageal cancer) & doing my best not to mis-juggle carer and doctor hats.
There is no duty to prolong life in my ( weary and jaded) opinion. As for the “right to die”: FFS we are all born to die.
At the risk of attracting opprobrium, I think Her late Majesty the Queen might have been one such.
Maybe HM decided to die in Scotland for that very reason.
But what led to this?
In no small part, I think it was learning that she could no longer safely be seated in what passes for a reasonable looking chair….and even That, only by being hoisted-which she Utterly Loathed.
Once there was to be no more hoisting, that meant remaining in bed and we all knew her views on That! She had always felt that sooner or later pneumonia would set in and then the time of her leaving would Not be up to Her.
For the previous ten years she had steadily refused hospital treatment as she had a horror of dying on an open ward as my father had (in very public circumstances) or even in a side room.
This way, it was Her way.
And for a morally upright person of deep and abiding faith she did herself proud. For lots of my childhood and teen years I was excruciatingly embarrassed of both my parents, but mum ‘s last few weeks? I was immensely proud of her dignity…. and her playfulness as well.
Unlike my mother, I am not ancient with appalling posture and failing mobility. So refusing food and drink will merely get me a chat with the psychiatrist!
But for sure this thread has got me thinking. Thank you @LatchKeyKid , what Do I want from the rest of my life…..
https://www.hospiceuk.org/our-campaigns/dying-matters
I think the point of me being here is that I am supposed to emerge blinking into the light of a new dawn , a new life much like @Bishops Finger (but not necessarily living on a boat!)
But gosh being read that list….
I wonder how many of us here on the ship have
* Made a Will?
* Discussed recovery (or not) from an illness or disease?
* contemplated what would happen were we to be involved in a road accident or have a sudden stroke (congratulations @Eliab btw, that is some long haul you guys have had to reach this point!)
* Do our nearest and dearest know our wishes?
I worked in A/E for a some years and the “ I never thought we would have to consider This” and the “ but he s so Young” conversations that I heard were tough.
As were the furiously angry bikers responses to hearing they might never ride a bike again…… meet them in town three years later and …. Amazing turnaround. Still on the planet. Got a new passion.
Life
It sometimes is great, it sometimes is odd, I guess the trick is to go with the flow.
But I m still chuckling at @Lamb Chopped ’s nephew. Now consigned to Never eating a hot dog in her presence !!!!!
Tell you what though , Monday s discussion will include me asking what Mr Alba would want me to do if I were facing what @Eliab ’s wife faced.
There haven't been any since Covid, but they may start up again since the government has decided that it is better that people should die than the economy should suffer.
What I learned from watching the situation was that if I am ever terminally ill like that, I absolutely do not want anyone to attempt a ressuscitation on me. My housemate's last memory of her mother was watching her be carted away for a failed ressuscitation attempt, and it was terribly distressing for her.
Also being slightly flippant, I have been given intravenous morphine once, and it was bloody amazing. Husband en rouge has been informed that if there's no hope for my survival, he's to tell them to give me the good stuff and let me depart high and happy.
And @Eliab, I'm very sorry to hear about your stroke. You and your family are delightful people.
As regards morphine, it is IMHO a gift from the gods as far as a peaceful and painless death is concerned. It eased My Old Mum out of this world when she was suffering (at 92) from extensive burns, with the resultant shock etc. - there really was no realistic hope of recovery. They upped her morphine, whilst I was present - they said nothing to me, but I realised what they were doing - and she died about 15 minutes later.
This thread is useful, inasmuch as it reminds us how important it is for our own peace of mind to make sure that our wishes are clearly known, and preferably put down in writing. If those wishes are not carried out, it won't be our fault (though that may not be much comfort at the time IYSWIM).
In certain circumstances, I need an immediate injection of hydrocortisone in order to stay alive (I have a form of Addison's Disease, thanks to my brain tumour
(FWIW, I've twice had at least the beginnings of an Addison's Crisis, and it's amazing how soon the hydrocortisone kicks in... In both cases, I realised quickly what was going on, and as quickly swallowed the recommended number of tablets).
I was trained in combat triage, though I never had to use it, thank God. Basically there are four levels. Green, meaning these people need minimal care; Yellow, meaning care can be delayed. Red, meaning these people need immediate care to live; and Black, meaning these people are not expected to live. The purpose of combat triage is to be able to focus limited medical resources for the benefit of most.
During the height of the COVID pandemic, especially when an effective medicine had not been determined, it could have been that your mother had more than one comorbidity that the staff felt she would not likely survive the disease.
When beds were limited and staff was stretched almost to the breaking point, it is quite common for staff to begin the process similar to combat triage.
Fortunately, some people at the black level do improve and recover, as is the case of your mother.
Nevertheless, I do believe it is important to have health directives in the case of incapacity addressing end of life preferences.
It turns out, in conversation with my mum, that she does want a “do not resuscitate” instruction - and it’s her right to have it. The issue was the complete lack of consultation*.
(*Not just lack of consultation, they didn’t even tell us - the first we knew about it was when I picked her up from hospital and it was written on the discharge paperwork.)
Not much comfort to the people affected, I know.
When chemo concoction 4 stopped working, in Sept 2020, Dad had run out of options. He was told that he had two to three months left. In fact, he lived for a further eight months.
Dad was completely organised, and made his wishes known. He didn't want my mother to see him suffer and wanted to be "bunged full of morphine" to speed the process at the end. He had a DNR.
What actually happened was different. He had a minor stroke, then a pulmonary embolism, was treated for both and recovered from both. The NHS care was exemplary, despite the fact that he was terminally ill and had already outlived the predicted "two to three months" when he had the stroke.
He then had pneumonia, but the antibiotics kicked in and he recovered.
He then got pneumonia again, and that is the primary cause of death on his death certificate. As there was a chance that the antibiotics would kick in a second time, he suffered more than he, or we, wanted or anticipated. Despite the fact that "Mr X has requested that we bung in the morphine" was written on his notes, the morphine wasn't bunged in until the antibiotics had been given a chance.
I don't think any of us had realised that when someone has terminal cancer, it might not be the cancer that kills them.
The level of competence and compassion Dad got from every part of the NHS - oncology and palliative care - between 2014-2021 was outstanding. No-one wanted Dad to suffer, but his forecasted death from terminal myeloma was not how he, or we, envisaged it, because in the end, his terminal cancer was only the underlying cause of death.
His wishes to die at home, surrounded by family, were met
How is he going to get his wish here?
But he Did!
At Home!
You may have been a little damp eyed writing this but for sure I may have something in my eye Reading it all again.
There is something about such journeys that is amazing.
When Covid first hit here there were few ventilators per head of population. I discussed this with my GP and said that as I am single with no human dependants I would choose not to be put on a ventilator before anyone who had dependent children. Unfortunately it's difficult to ensure this as it depends who else is in need at the same time.
This thread has reminded me that as I have developed or discovered several health conditions since then I need to pick up an advanced care directive to complete next time I go to the doctor. i understand a copy of this is lodged with my medical notes so it will be available if I am admitted to hospital.
No wonder lots of people prefer to put their head in the sand instead. But head in the sand equals bum in the air and that ‘s never a good look…..
Not a good look at all, at all...
I'm rewriting my own Will - I made it 6 years ago prior to brain surgery, but since then things have changed, and some people at least have...umm...moved on.
I suppose some sort of directive as to whether I wish for palliative care, or active intervention, or whatever, ought to be a separate document (as it would be somewhat useless after my demise).
@Huia's suggestion of an advanced care directive is useful - do we have such things in England? Not that GP appointments are all that easy to come by in these Dark Days, leading up to the End Times...
https://compassionindying.org.uk/library/
All 3 seem to me to be morally equivalent, with the (important) practical distinction of verifying that it’s genuinely free choice. But with little moral difference.
I’m glad that I made my wishes clear in advance because I have no doubt that if I hadn’t done that (and Mrs Eliab so faithfully insisted that I really meant it) I’d now be dead.
Here in the United States, it is recommended one should review their Will about every four years because of changes to tax laws and other changes.
This.
I see a difference between euthanasia and assisted dying - the former ‘being put down’, ie expecting someone else to do the deed, and the latter helping a loved one to kill themselves.
There are ‘slippery slopes’ with both, of course, but compassion is a factor which figures highly for me and I do ‘get it’ that helping someone to quietly slip away by their own hand may be preferable to seeing them continue on an agonising path to the inevitable.
Good palliative care is something to campaign for - it’s disgraceful that hospice places are patchy at best and only provided by charities.
I am not that comfortable with assisted dying either, because I always have a doubt about whether someone making that choice is making it because the alternative is poor care, or because they are actually clinically depressed at the time, or because societal ableism has led them to catastrophise about the prospect of some forms of disability. I have heard people say, for example, that they would rather die than reach a point where they needed assistance with toileting or needed incontinence pads. In fact millions of people who actually live with incontinence don’t find it intolerable.
To me, yes. I am fully aware of how difficult it is, and that every case will be unique.
Someone close to me, when told it was only a matter of time, said ‘Let’s get on with it then’. She was straight away given an injection, immediately lost the ability to communicate with loved ones, and she was kept in that state on a ‘Liverpool pathway’ until she died a week later, having had nothing to eat or drink.
I am convinced that she wanted to continue to engage with people - she wasn’t in pain - and that her words were a reaction to what she had just been told.
I still wonder whether she might have lived. I will always regret that we didn’t challenge it, and that those last days were lost to her and to those close to her. If she had been given control of that button, I am sure that it would have been very different.
Yet was more than prepared to just decide not to eat or drink, knowing that her wishes would be respected.
Quite how she knew I have no idea but she was correct.
Crucially she Could talk (well whisper) with family right up to the end.
@Raptor Eye I m sorry that wasn’t the experience for your close one
Apparently the suicide rate in veterinarians (who only put down animals) is 4 times the general population's. So yeah, I think we should be concerned.
link.
That article offers as a possibility the idea that vets (who habitually put down animals to ease their suffering) might as a consequence be more likely to think it reasonable to put down (at their request) humans to ease their suffering. That's a plausible speculation, but the article offers no evidence that it is actually true.
It's also the case that doctors and dentists (who don't usually euthanize either people or animals) have a significantly elevated suicide rate, which suggests that the elevated suicide rate is more likely to be associated with the commonalities between those professions rather than the exposure to euthanasia.
But I was also thinking that it might make you more likely to suggest euthanasia, in situations where it was not appropriate, over time.