Assisted dying. Some thoughts, by Ian Daly

Content warning: this blog discusses suicidal thoughts and assisted dying.

The British Medical Association (BMA) recently voted to change its opposition to assisted dying and has taken a neutral stance, neither opposing nor supporting attempts to change the law. 

In this blog Ian Daly, who has primary progressive MS, discusses why he welcomes this shift in position.

Assisted dying. Some thoughts.

I’m seeing on Facebook, Twitter, and national news outlets that there are several organisations pushing for the above to be legalised. The Government is ‘looking into it’, it’s being discussed by committees, petitions are being signed and so it goes on. The BMA will now neither oppose nor assist with suicide. A fine case of sitting on the fence, rather than opine on what is an important issue for so many.

It's time I declared an interest. I have Primary Progressive Multiple Sclerosis (PPMS) and my future is highly uncertain. Chronic fatigue, constant pain together with deteriorating mobility and brain function means life has become more of a game of chance than it used to be. Drugs do provide some relief, but I’m never allowed to forget I am in the grip of a horrible chronic illness. The pain is a constant in my life that I would rather be without. It hurts. A lot. (Aww poor me eh?)

MS, as the media is fond of telling me, is ‘not a terminal illness’, i.e., it won’t kill me but, as I like to suggest, it might make me wish I was dead. Which brings us nicely around to assisted dying and suicide (see what I did there?) in what I hope can be a cheerful discussion. 

Current law states assisted suicide is punishable by up to 14 years imprisonment. Presumably, I as the future suicidal person, will escape prosecution on the grounds of being dead but unfortunately anybody who cared enough to help me would be liable to prosecution?

There is also an assumption that, in civilised society, we can alleviate pain and if services are correctly funded requests for assisted suicide are rare. The UK is apparently a world leader in palliative care.

Then there is the argument that enabling assisted suicide would fail the vulnerable patients and undermine the development of palliative care. We also have the sanctity of life. Human life is sacred. It’s against God’s will. Then we’d be putting too much power into the hands of doctors, making them too powerful and leaving the Doctor Patient relationship open to abuse.

As an individual with a vested interest, I would rather anyone who assisted me in leaving this wonderful planet was not arrested, questioned, tried in a court of law, and sentenced to a period of incarceration. I suspect I’m not the only one judging by some of the horror stories in the media.
Palliative care, usually associated with cancer patients who are ‘battling’ their disease is a wonderful thing and I admire absolutely the people who assist patients in their final days and hours, together with the courage of the patients. What does concern me is the belief that all pain can be alleviated. 

Pain is a strange phenomenon. If I stab you in the arm with a compass it will hurt. You'd feel pain, and a certain amount of indignation I’d have thought. A malignant tumour may grow and press on a nerve. You feel pain. I lie in bed, and I feel pain. Pain with no external stimulus. My hands feel swollen (they’re not) and something is stabbing at the sole of my foot (they aren’t). My ribs hurt and it feels like I’m lying on golf balls (I most definitely am not). Both feet can feel like they are severely sunburnt, I live in the UK so clearly this isn’t the case. None of the above is ‘real pain’. Or is it? Pain is the brains way of telling you to do something. Get your damn hand out of the fire is a fine example. You pull away and run said hand under the cold tap. But what happens if your hand isn’t in a flame, but your central nervous system is a bit off kilter, sending rogue messages to your brain?

It hurts, that’s what. And the pain is the same as pain because of a stimulus. No different. I’ve had MS for around five years and have been in some form of pain for all that time. I take medication which alleviates a portion of it, but I am never pain free. This fills me with sadness and a fear for the future.

Aside from the pain I have what has become known as ‘mobility issues’. In essence I can’t walk. My legs are unable to support my body for any meaningful length of time. Add to this I only have partial feeling in my feet and several other parts of my legs are numb and I am unlikely to win any Irish dancing competitions. Which is a blow. My legs are a blur, but for different reasons.

My cognitive ability also appears to be in decline. I forget things. Not like the usual getting old and forgetting where I’ve left my slippers, OK I do that too but that’s not it. I forget words mid-sentence, or I’ll start a sentence and the words will all come out garbled. As my long-suffering partner puts it, “all the right words, but not necessarily in the right order”. Basic movements are also problematic. I can slide a wine glass across a table towards you with my left hand but then struggle to let go of the glass. No issues with the right side. Don’t ever give me a glass of liquid and ask me to walk with it unless you are intending to wash the floor with it, or you’re interested in random splash decorating with liquids. I find the floor unsteady; it moves from side-to-side unbalancing me. And don’t get me started on gravel or grass. You may as well ask me to tap dance on top of an HGV. 

All the above is a constantly developing mess that changes on pretty much a daily basis. 

To my knowledge there’s no cure for any of this which brings me back to assisted suicide. If we cannot alleviate pain and disability, be it mental or physical, then surely there should be an alternative? The UK may be a world leader in palliative care, but I’d bet that funding for this is, at best, stretched. I do not want underfunded palliative care. No. Thank. You.

As for the sanctity of life and the belief that suicide would be against God’s wishes, well good luck with that. I, as you have no doubt guessed, am not a religious individual and would, without hesitation, punch said God in the face for cocking up my life with MS. I do however believe you have an absolute right to believe whatever you want but you do not have a right to force your opinions onto me, and neither does your church of whatever flavour you believe in. Human life may indeed be sacred. Mine is certainly important to me, and for the moment I intend to hang onto it for as long as I possibly can but when the time comes, and I hurt too much or I can’t wash and dress myself or manage in the bathroom, then you can be assured I am out of here. My ‘sacred’ life is mine. Strike that, my life is mine, to do with what I please, and I reserve the right to end it whenever I choose regardless of whatever law is in place at the time.

I think I’ll stick around for a bit though. The sun’s out.

Ian.

In a separate article, we give an overview of assisted dying, look at proposals to change the law and the experience of legalised assisted dying around the world.