Dr Peter Scott Morgan gave a thoughtful and provocative presentation on behalf of NDY to the All-Party Parliamentary Group on Dying Well earlier this month.
He also wrote a couple of articles which have been published in The Times (£) I wrote this with my eyes — don’t tell me there’s no hope | Comment | The Times and inews https://inews.co.uk/opinion/motor-neurone-disease-tech-assisted-dying-law-changes-1110154.
They’re both based on an article he wrote which we thought you might like to see, which is below.
All my life I’ve been passionate about equality and fairness. Consequently, when I heard of a move to update the law on assisted dying, I intuitively supported it; the intentions appeared so obviously reasonable, compassionate and humane.
But as a scientist, I’m trained to question even the obvious. So, I set about researching the Bill’s pivotal assumption that it’s possible to ensure informed choice without pressure. And I focused on motor neurone disease (MND) – the ‘cruellest disease’ and often-used justification for assisted suicide.
Fortunately, I’ve spent 30 years analysing complex social systems to predict unexpected consequences. And I also know a bit about MND because I have late-stage MND myself. Since 2017 doctors agreed I might die within six months. Now, I’m almost completely paralysed. Locked In. Allegedly, well past my death-best-before date.
My research uncovered three things.
It’s impossible to make an informed decision about your options if the medical community around you isn’t aware of how many exciting alternatives are emerging. Take my own instance. Thanks to pioneering NHS surgeries, continuous healthcare funding to look after me at home, and cutting-edge hi-tech that lets me speak in my original voice (and type this) using only my eyes – ‘invariably fatal’ MND may never get to kill me. Heart disease or dementia may do the honours. What’s more, my new capabilities will keep improving – in pace with computers.
Already, my overall quality of life is exceptional. I have love. I have fun. I have hope. I have dreams. I have a purpose. And I’ve found the trick to enjoying total paralysis is simply to imagine you’re in a luxury spa hotel and the maître d insisted you put your feet up and don’t move a muscle.
Mine is only one instance of rewriting the future of extreme disability. How many doctors tell their newly diagnosed MND patients that there’s such hope?
It’s impossible to make the choice to live – let alone thrive – if you’re only offered ways to die. Let’s give an example. To survive with MND long-term, you typically need an operation called a tracheostomy that lets a portable device breathe for you, as well as a cough-assist machine that clears your lungs of phlegm. In the UK, decisions on whether these options are available to you if you have MND are made locally not nationally. As a result, some who desperately want to live with MND are being told they must die instead – because of where they live. Less than 0.5% of people with MND in the UK receive this life-saving combination; in Japan, it’s over 30%. If I’d carried on living where I grew up, I’d have been refused treatment and died in 2019.
It’s impossible to ensure people make their decision without pressure when the current system is so unrelentingly negative.Just do an internet search of ‘MND’ and you’ll see what I mean. Avoiding coercion requires people to believe there are serious alternatives. Otherwise, it’s a sham ritual of decision making whose outcome was never really in question. Equally, I worry that many making this decision may be clinically depressed. Or so worried about the emotional and financial burden they’ll bring it feels an act of love to sacrifice themselves for the good of those remaining.
So, what do I now feel about the Bill to change the law on assisted suicide?
Confusion about the likelihood, let alone ‘inevitability’, of intolerable suffering; concern that we’re not ‘only shortening life by a few months’; worry there are insufficient protections against patients not being fully informed; uncertainty over being ‘terminal’ rather than simply ‘disabled’; anguish that some with an extreme disability may unnecessarily kill themselves in anticipation of what they incorrectly believe will inevitably happen; upset at the injustice of protecting an individual’s human right to choose to die, without putting the same effort, education and funding, into their right to thrive.
My intuition still says to update the law on assisted dying. But it must be equal and fair, otherwise, it becomes discriminatory euthanasia. Perhaps unknown to its designers, these proposals are biased towards unnecessarily culling the very people who would cost the most to keep alive and help thrive. That may be economically convenient. But it’s also cruel and uncivilised.
We’re better than that.
Dr Peter Scott-Morgan is a scientist researching breakthroughs in the clinical care of profound disability. He was diagnosed with motor neurone disease in 2017.