'It's been a rollercoaster from day one and I know I'm on a deathbed from now on. I've had my highs and I have had my lows, but no more... It's only when you go through what I am going through that you understand that life is generous.'
'Everyone I know with MND is trying to do positive things, otherwise they would sink into despair. It's a coping mechanism. Doing things means that you can pull in friends and family to share something both fun and rewarding.'
The pro-euthanasia lobby often promote - or at the very least, piggy back upon - media reports of people facing difficult prognoses who want to end their lives rather than face the prospect of deterioration and all the difficulty that such a path may visit upon them. Such persons often become, for a short while, celebrities for a macabre cause. Whether intentional or not, the media focus itself can become addictive and, if they are genuinely attached to their cause, it can provide, I imagine, something of a distraction or a 'reason for living', if that is not too crude a phrase in such circumstances.
But do these difficulties and their circumstances really make for a substantive reason for changing the law? I would argue, no.
In a debate in Launceston, Tasmania a few years back, a delightful woman on the other side of the debate told the story of her husband who had motor neurone disease and took his own life rather than face the trajectory of deterioration. She described the understood trajectory of MND in some detail. I imagine, though I can't confirm it, that what she described was likely to have been the worst-case scenario.
One could easily understand the anguish of what her late husband was facing: he was a fascinating person of great achievement. Through meeting his wife and son I certainly got the sense that he would have been a wonderful person to have met. I imagine the audience that night would have felt likewise.
Yet, at the close of the evening when the audience had a chance to speak, a woman rose from the back of the auditorium and said that her husband had recently passed away after suffering with MND. She told the audience that his death was, "nothing like that", referring, clearly to the earlier description.
More recently I received an email from a gentleman questioning how I could hold my opposition to euthanasia and describing the recent loss of his own mother. He said that she had been bereft of consciousness for the better part of seven years and that her passing was not dignified.
My mother-in-law had been similarly lacking consciousness for much longer than that, as I relayed by return email. Yet Mum had a very dignified passing. My conclusion was simply that his unfortunate experience was not, therefore, an argument for euthanasia at all.
Readers will recall the celebrated pleas of Englishman Tony Nicklinson a few years back that was played out in the British Courts over his wish to die. Nicklinson had Locked-In Syndrome'. Yet during the media hubbub over this case a young man with the same condition saw fit to tell the British public, through the media, that while his life had significant limitations, that he felt he had a good life and wanted to let people know that not all Locked In Syndrome sufferers were like Nicklinson.
One can easily understand what might have been the young man's concerns. If people think that all Locked In sufferers are desperate to die, then perhaps he won't get the kind of care he would need to live if there were ever a medical emergency. Perhaps he simply wanted people to know that he wasn't down in the dumps about his accident. His motivation for speaking out was unclear but nonetheless poignant and timely. I doubt that people like Nicklinson would have considered the effect that their public cause would have on others with the same condition. Their focus is essentially on themselves. Understandable given the circumstances; but nevertheless, not the complete picture.
It is not the illness or the prognosis that is the driver for euthanasia in any of these cases. It has more to do with the person themselves and how they decide to cope with their pending or existing situation. It really is about their choices.
A few months back, another MND sufferer, Paul Chamberlain became something of a cause celebre for the assisted suicide campaign in the UK. He was interviewed repeatedly on British media including a joint interview with Dr Kevin Fitzpatrick from the Euthanasia Prevention Coalition - Europe. Once again we find the counter position put by other MND sufferers including former Springbok Rugby player, Joost van der Westhuizen.
Then there's the story of Alistair Banks. Throughout his MND and up unto his death he wrote inspiring messages of hope. He said:
This quote from Dr Peter Saunders, campaign director of Care Not Killing UK summarizes my point: The overwhelming vast majority of people with diseases like motor neurone disease, multiple sclerosis and Parkinson's disease - or even locked in syndrome for that matter - do not wish to end their lives.
So, clearly, we're not (or rather should not) be considering changing the law simply because some people, for their own reasons, have decided that 'enough is enough'. Analogies abound, but for the sake of decorum I'll simply leave the reader to consider.
The same is true for those, like my correspondent, who have witnessed the death of a loved one and who claim, from their experience that the law needs changing. I have no doubt that some people die better than others, just as people deal with the dying and death of a loved one in many different ways. Again these are not arguments for euthanasia. Rather, they suggest that we need to continue to learn better ways of caring and to make sure that quality care is universally available.
No-one is denying that death and dying are difficult experiences for everyone concerned. Even for those who die a 'good death' grieving for the loss still remains as do the images of the loved one in those final days and hours.
But what we are really seeing here - particularly with the celebrity cases of people who want death rather than their disease - is about a personal choice. Autonomy, broadly speaking is a good thing, but should we be creating what would essentially be an impost upon society at large of euthanasia or assisted suicide law because some people - probably only a handful in any disease cohort - want to choose another path? It is not up to society to give license to such choices. We may have decriminalised suicide, but we should never endorse it.
Nor would creating a law to make a provision for this few, leave the rest of society untouched by its effects. Such laws directly affect the autonomy of others and the rights of others to experience good care, support and just treatment without the spectre of euthanasia. All of humanity is diminished by the very existence of a law that implicitly tells us that some people's lives are less worthy of life than others. No man is an island.
The argument for euthanasia and assisted suicide based upon the heart-wrenching stories of a few may seem to be compelling and certainly, they make for good copy for current affairs programming. But they are false arguments.
If not, then we must consider euthanasia as being solely about eliminating suffering for individuals; in other words, entirely subjective and defined only by the person who chooses such an end. If that were the case, then any argument for 'stringent safeguards' or for limiting who might have access are totally meaningless and any attempt to contain it, farcical.