Content warning: Old age, Alzheimer’s disease, assisted dying. This post touches on delicate subjects that some may prefer not to read about. Please feel free to walk away if it might upset you. The post is me working difficult things through in my own mind, and I’m choosing to share it because I know others have been through similarly difficult times.
At four in the morning on the day my father died, the young doctor on duty called me from the ward and told me that his condition had deteriorated. Dad was having trouble breathing and the doctor was going to administer morphine. He warned me that he might not recover. Four or five hours later a nurse called me to tell me he had passed away.
That young doctor would have had to make a judgement about the amount of morphine to allow into the canula in my father’s arm. Had he perhaps had to recognise that, however carefully he calibrated the dose, my father was so ill that there just might not be a perfect amount of morphine; enough to alleviate his suffering while allowing him to wake up again? Had his call to me really been to ask my permission to let my father go, rather than to prolong his discomfort? Or had he, perhaps, simply wanted to share the burden of the difficult decision he faced, towards the end of his long night shift?
I’ll never know.
I’ll never know because the system doesn’t allow me to know what was really in the young doctor’s mind. He and I were unable to have a discussion about what was truly in my father’s best interest at that moment. I would have been ready for that discussion and would, I think, have been comforted by it. Instead, we were forced to skirt, with our carefully chosen words, around the ill-defined edges of a moral, ethical and legal black hole, around which successive governments have erected “do not enter” signs, rather than attempt to deal with the real issues that lie within.
And now, only ten months later, I’m asking myself the same questions in relation to my mother. Her move from hospital to a home seems so be a tacit recognition that medical science cannot help her now. She’s bed-bound, almost completely immobile, has barely any communication and seems uncomfortable much of the time. Recently, in a rare moment of lucidity, she communicated to her distraught granddaughter that she didn’t want to live any more. I believe she was trying to tell me the same thing, though less clearly, last time I visited. Now she has stopped eating or accepting her pills, obstinately clamping her teeth tight shut, distressing the nurses (who will be considered to have failed if she doesn’t take her medicines) and distressing us, who have to watch helplessly as she tries to do for herself what we and her doctors are unable to do for her.
Is there a stage in all this when the compassionate course might be to accept that medical help is not prolonging her life, but merely delaying her death? Not only delaying her death, but forcing on her a much less comfortable and dignified end than the one she would choose for herself. Has my mother not reached a point where to provide her with a comfortable end, a good end even, might be a better use of the doctors’ and nurses’ skill than what she is now forced to endure?
We seem to be entering a period of debate on these issues in the UK, prompted by The British Medical Association moving its position from “Against” to “Neutral.” Opinion polls suggest the public are largely supportive of change, though it will be opposed by religious groups and others. Everyone accepts that any new legislation will have to come with safeguards, checks and balances.
But, as Mathew Syed says in a thoughtful piece in the Sunday Times: “Surely the owner of a life is the person whose life it is.”
For myself, I recognize the huge moral and ethical complexities raised by the subject of assisted dying. But the contrasting experiences of my father and mother have made me think about the kind of end I would choose for myself
I would like to share this with the members of the hospital bioethics committee of which I am a member. May I? Of course i will not say where I read it.
Best wishes,
Arthur
P. S. My mum died a year ago, lucid more or less till the end, doesn’t make it easy.
I would be delighted for you to do so if you think it might be helpful. Please carefully remove any links. Copying and pasting can transfer some hidden links if you are not careful.
Also happy to delve further now Mum has finally left us. If anything my views have become more strongly held now it’s an experience I can look back on rather than one I am immersed in. B1
Hi B1, this has brought back such a lot of memories and feelings.
My dad had a stroke and was offered a new drug that saw him live another 10 years. 10 years of slow, painful decline which, in contrast to his recovery from heart attacks and an ICD implant 5 years earlier, left me questioning why it was done, and who it was for.
As you know my mum died of COVID last year, she had dementia and was on that journey to a most unpleasant death from it. I have to admit to being relieved by the speed of her unexpected death and glad that she hadn’t had to deteriorate further.
I miss her, but I knew she was on her way out of her life and I am grateful that she had a peaceful death. Her doctor rang me after she tested positive and told me they wouldn’t be moving her to hospital. We discussed treatment and I asked that she be made as comfortable as she could be. We agreed to let nature take its course and I remain grateful for his care to this day.
By the time dad ill and mum was in a home I understood that their time here was limited. They were separated for the first time since their marriage and both were adrift and lost. The house and garden which had meant everything to them was full of weeds and hospital equipment. Dad struggled on his own without mum. Mum was anxious, upset and missed him dreadfully. It was a painful experience for us all.
I wish it could be different for us all at the end, I have no idea how to do that or what it might look like. Perhaps some things just have to be lived through.
Sending you and your mum love and best wishes, you know where I am if you need/want to talk ❤
Thanks for sharing your own experience, heart breaking though it is. As you say, perhaps some things do not have an easy way out and just have to be lived through. I find my own opinions increasingly shaped my own certainty about the end I would choose for myself. But it might be too difficult to get there.
My wife died 195 weeks ago – Alzheimer’s. I miss her more than words can say.
I get angry when I read about or hear about developments in Alzheimer’s which will prolong life. I ask “ it’s incurable so why extend distress”
And the longer it goes on the greater become the risks from other illnesses ( my wife developed cataracts and also had a stroke before eventually “slipping away” )
I would strip out moral ,ethical,religious discussion . I had a discussion with a doctor and my own view is that the medical experts should be directed to treat this failing body like a TV brought in for repair
If you can fix it – then do so
If you can’t then get rid of it ( aka euthanasia)
Any time I have contact with health professionals I ask them to double check that any written or computer record about me has the letters DNR writ large at the front
And , consistent with the TV analogy I have already paid for my own funeral ( no speeches/music/ a cheap coffin/ preferably no mourners and my ashes to be scattered in a local stream)
Just sending you all the strength and calm that I can. You know how I feel about good endings. You know where I am anytime.
Thank you, Honey. xx
Oh, my heart aches for you. It’s so distressing.
I am not quite there with my dad yet, but we are on the precipice of ‘something’ and I don’t know what and I feel completely ill equipped to deal with it.
We are, on the whole, none of us, equipped to deal gracefully and kindly with the journey to death, for ourselves or our loved ones. As a society, our obsession with ‘life at all costs’ does us no favours in this time.
I had a little cry this morning, and no doubt there will be much more to come: I’m afraid if I start I won’t be able to stop, so I hold it in and do the best I can for him while floundering in a mess of stress and worry and helplessness.
Sending lots of gentle pats and empathy.
Ferns
Oh, Ferns. Thank you so much for your reply to this and for sharing your thoughts about your father. I think we all feel ill-equipped to deal gracefully with this. Bereavement counselling is always something that happens after death, rather than something that helps us prepare for it, or deal with the slow, decline that seems to precede so many people’s passing.
I have felt conflicted about publishing this post, but there is a live debate in the UK at the moment, prompted I think by the main doctors’ groups withdrawing their blanket objection to the idea of assisted dying. They are not exactly supporting it either, but at least their neutral position allows the debate to happen.
We have just had voluntary assisted dying legislation passed in this state (3 days ago, though it will not be available until 2023 at the earliest). It is already law in most other states.
I’ve not looked at all of the details, but in one state you have to apply 3 separate times(!) and be approved by multiple gatekeepers each time before they might say yes, and it’s not available for those whose mental capacity is compromised. The latter is understandable, but obviously this puts it out of reach of many elderly folks who know what they want when they’re lucid, but who might have mental degeneration of some kind :(.
All the hugs to you and your family.
Ferns