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I watched the debate in Parliament on Friday and I have much sympathy with all the speakers, particularly those with personal experience. In these matters, politics (thankfully) is a silent observer. I am pleased the motion passed, but disappointed by the (understandable) constraints and limitations proposed.
My own experience.
My mother was 66 years old when she was diagnosed with MND. Two-years retired from a teaching career in a special needs school, she was a healthy, beautiful, vibrant woman – a grandmother to three young children. Her disease transit was rapid and severe. Two years after diagnosis she passed away in a hospice, unable to speak or eat, and could only communicate by writing slowly, pen on paper. Yet her death was good: peaceful, serene and without any assistance whatsoever. She was ready to die and had told the family that a few days before. When she did it was on her own terms – there were no other complicating or contributory pathology – she simply stopped breathing.
My father died nine years later with dementia and Alzheimer’s. His death was very unpleasant and extremely difficult. In that respect it was no different from the last six years of his life. A once quiet, proud, gentle man, he became belligerent, angry and prone to violent outbursts as his cognitive decline advanced. He would have been mortified before the onset of the disease had he been able to see a vision of himself in later years – and had assisted dying been an option, he would very likely have made provisions. I would have supported his decision.
I’m not at all sure my mother would have done so. She had no cognitive decline and was in great mental health throughout her illness. There were never any discussion on the subject; but, however she managed it, she died with her own will. But very few will manage that kind of death.
I am now in my mid sixties, in reasonably good health, with many good friends and interests. I’ve had a long clinical career in the NHS and private healthcare working primarily with the elderly and have discussed death and all around the subject with many patients over the last 40 years. Every one had a different perspective borne out of an experience that was still to come my way. It is a subject that I have considered deeply throughout my life.
However, I would like to see another eligible category. Those who wish to terminate their life earlier rather than wait for a ‘natural’ death. Whilst I have no terminal illness currently, I am cognisant that the wider community of people are facing an impending catastrophe that will likely lead to many untimely deaths and much suffering. Such a prospect driven by the unsustainable population overshoot. In my lifetime, our species more than doubled in number from 3.2 billion to currently 8.3 billion. Climate change is but one facet of a complex and immutable threat created by the sheer number of humans and their ecological footprint.
The only way humanity will prevail beyond this century is if we can reduce our population to within the earth’s carrying capacity – which has always been under one billion people. I’d like to think that we could achieve this by choice – rather by wars or pandemics – and I would be more than happy to utilise that choice when I am ready to do so.
I don’t seek to inculcate others into following suit – these are difficult personal decisions that run contrary to all that we hold dear – but I suspect they will feature prominently in the not-too-distant future. There are many ways to die, but it would be good to have that option, to avoid an unnecessarily distressing and unpleasant end.
Would be interested hearing your opinions and experiences.
Hi Shibboleth. I have a similar experience of MND to yours, as my brother in law was diagnosed with the disease a few years ago and seemed to have a very rapid version of the disease and was dead within 9 months of the diagnosis.
He was a very intelligent person – previously a university lecturer with a PhD. It was heartbreaking to know that he was fully aware of what was happening so quickly and could not do anything about it. He also died in a hospice unable to eat, drink or even breathe unaided for the last three months.
Would he have wanted to end it all even earlier? I don’t know, but I suppose having the choice would not have hurt him, even if he had turned it down.
I think the almost hysterical reaction of some opposers is out of line. After all, in order to be eligible for assisted death under the propsed bill, a patient would have to have less than 6 months predicted survival time, and have been signed off by two independent doctors and a high court judge. This is not something that is going to be easy to get to go through.
It’s predominately the lack of dignity and a reliance on others that makes the MND journey very difficult, but it’s just a blessing that the condition is not painful. There are many other terminal conditions that are unfortunately – inoperable brain and spinal cord tumours – for which there need be no debate.
Of course, physicians have assisted the journey for patients long before the NHS – in fact throughout history. Making it easier or more comfortable for conditions that are refractory is what we now understand to be “assisted dying”.
Thanks for your story.
I think those with dementia tend to suffer than their friends and relatives. They seem quite content in their personal space and the fact they don’t recognise their spouse or children rarely seems to bother them as much as it bothers those close to them.
On the occasions where friends/relatives of mine were suffering from severe mental deterioration I was told to just go along with what they say rather than arguing or correcting them. Hence, when my 90 year old mother in law asked me why her mother had not yet come over for a cup of tea, instead of replying “because she has been dead for 30 years”, I just told her she had probably been stuck in traffic and that seemed to be acceptable.
My Dad, who died in a 2013, made it quite plain he would happily take a bio-term pill if one was available. And he wanted to go without further delay. A highly compassionate, intelligent and dignified man, he hated how helpless and wretched the final stages of liver cancer had made him.
He hid his actual diagnosis until a month or so before he actually died. His stoicism was remarkable. However, in a hoarse whisper, he told me, “I wish it would go twice as fast now.” This was quite shocking from a man who didn’t seem to think anything should be given up on. He emphasised that there’s no such word as “can’t” to me as a child, I still have trouble saying the word.
He fixed the roof, fixed everything… built an extension, designed and installed a central heating system in 1970 that was so advanced, I still haven’t found a system today capable of maintaining such an even internal temperature. Installed one for his parents and his in-laws, too.
He changed the car engine, repaired just about anything which wasn’t spot welded shut. Loved gardening and nature generally. A love of books and Wagner, an awarded photographer, his profession was that of an industrial chemist, a worldwide recognised expert on metallurgy.
When I saw Terminator II in the 1990s, Sarah Conner talks about the Terminator being the ultimate father… “…It would never leave him. It would never hurt him, never shout at him, or get drunk and hit him, or say it was too busy to spend time with him. It would always be there. And it would die to protect him.” – I thought at the time, jeez – that’s my Dad!
A committed socialist. The most wonderful father anyone could wish for. Never even got a parking ticket or a speeding fine. (Although he did get busted down a couple of ranks during his national service, for striking his commanding officer for bullying a friend)
And he died a horrible, painful, miserable death because of the cowardice of politicians.
A very moving testament, Glenn. You were very fortunate indeed, which makes it all the more difficult. There’s something of that generation that was most admirable; their decency, dignity and humility. I’m sure you recognise those traits.
I didn’t find out until I was in my 40s that my father was a Scottish internationalist (football) and made his debut in 1953 against England in the schoolboy home nations fixture. He was marking a lad from the northeast making his England debut – Robert Charlton. Yet he never spoke about it until I discovered his boots, shinguards and some caps with a bundle of match programmes in an old suitcase in the loft. He didn’t know why I was making a fuss.
I’m not sure I agree with Jon regarding the distress from dementia on the individual. It’s a slow process – painless, but disconcerting and distressing. There are times or moments of clarity and remembrance – which can be just as distressing with remembrance, realisation and reality. It’s a progressive neurodegenerative disease which is increasingly common with long covid in addition to the baseline prior to 2020. I’d like to think I would still have capacity to do something about it if I go down that road.
Shibboleth: Thank you for your words here. Yes, that was the “silent generation”, I believe. They didn’t complain (much), certainly didn’t whine and cry about everything. Nor boast much about their accomplishments. Just got on with it with quiet dignity. Not to say society didn’t have a few problems then – particularly if you failed to be a straight, white male.
When it comes to our Assisted Dying bill – and thanks for setting up this thread, incidentally – it is a start, but it seems extremely limited in scope. Why only assist those who would die anyway within six months? Having an indefinite period of perhaps many years of misery doesn’t seem like a life worth living. At least, not to the individual, and I seriously wonder who else is qualified to judge.
For instance, if I were rendered paraplegic, and being pretty fit expected to live _decades_, I might well instead want to say my goodbyes and kick off.
The hysterics from the sanctity-of-life crowd was fairly predictable – cartoons of merciless judges handing down death sentences to frightened, bullied undesirables that society just wanted to be shot of. And evil killers just slavering at the prospect of seeing them off, of course, with money-grubbing relatives rubbing their hands in anticipation of an early payout.
A classic slippery-slope fallacy, and if they had any evidence that this is how it goes from the many states already offering assisted dying, they would be screeching it from the rooftops. They don’t, because they have no such evidence. Yet they still fall back on this as their best argument.
Anyone thinking dementia is a quiet way to go – just slipping out of reality without too much bother – ought to spend a while at a nursing home. People are frequently angry, confused, violent and desperately distressed. It is far from peaceful, and totally undignified.
Personally, I would like to sign an agreement that determines if I cannot answer some simple questions such as, who am I? What year is it? I would also say, “Who is the Prime Minister”, but in an increasingly unstable country like ours, that might be a tough one unless you really keep up with the news.
Upon failing to answer such basic questions, and if it is obvious I have no capacity, fair enough – I, for one, am ready to go.
