Urban Fathers' Liberation Front

Confused dads working out the city

What Tony Nicklinson taught me about life and death

on August 22, 2012

At the end of last week, morning commuters were greeted by their free Metro with the heartbreaking image of Tony Nicklinson weeping inconsolably.  Tomorrow, they will read about his passing, having refused food in the last few days.

Nicklinson suffered a stroke in 2005 which rendered him paralysed from the neck down, unable to communicate, yet fully conscious.  He regarded the latter stages of his life as, ‘dull, miserable, demeaning, undignified and intolerable’ and he was adamant about his wish to die.  The emotional response to the High Court’s decision, last week, to throw out his plea to have a doctor end his life was plain for all to see.

Pro-life groups and the British Medical Association had welcomed the decision, and neither were seeking any changes to the law in the future.  Both claim that any change in the law would have dangerous consequences far beyond the circumstances of this particular case. The pro-life group SPUC have called the continuous efforts to change the assisted suicide laws in this country insidious, and consider that the only response to those who find themselves in a similar situation to Mr. Nicklinson is compassion and solidarity. No doubt, with his death, these groups will be relieved that they do not have to contemplate an appeal.

His death has to raise questions about why he couldn’t have resisted food before the case was heard, and thus have achieved his wish without the uncertainty that the case he brought had caused. It seems to suggest that someone has made a conscious decision not to feed Mr. Nicklinson, and it seems to be the case that what has resulted here is assisted suicide by the back door. The response to the news of his death will be interesting.

However, I’m deeply uneasy about the resistance to some kind of euthanasia policy in the UK. Without knowing Mr. Nicklinson personally, it does seem abundantly clear that he had a very strong desire not to go on living, and was effectively stopped from ending his life by the condition which made his life abhorrent. If he could have killed himself, he would; it seemed that he couldn’t and the compassionate response did seem to be an allowance of some kind to help him out.

I draw on some experience. My first wife suffered with a brain tumour for eight years. Over this time, her condition deteriorated, and she ultimately loss much of her sight and much of her memory. In her last two years of life, she needed help with literally every aspect of life. We had spoken at length over that eight years about the condition and it’s potential for producing life limiting effects. She was very much of the view that life was for living, but when that life became meaningless and could not be enjoyed as she had done for her early years, she would rather be set free.

It’s a very difficult situation to find yourself in as a carer. My wife’s life had, in the last 12 months or so, lost meaning. The lack of an ability to make memories, and her rapidly receding store of past memories, meant each day was effectively forgotten as soon as it occurred, and had no context. Her lack of sight compounded the problem of memory loss, and the absence of both made overcoming either condition impossible. She had cycles of deterioration, episodes of madness and days of chronic weakness. I could not ascertain her feelings about it, because she could not express them, but I think that she would have rather not lived than go on living in this way. Had she had an option of defining how she might die, via a medical route and when she was able to consciously consider it, knowing that this would have been implemented when she reached a certain point, I think she’d have taken it. As her husband, losing her was inconceivable, but so was letting her live as she was living.

But, we didn’t have that option. As her life drifted by and her condition worsened, it was up to her family to make decisions about her care with the medical team looking after her. We were asked about what to do in the event of seizures or events that would render her unconscious; we were asked about how far to go with pain relieving drugs and resuscitation. It was called end of life management, but it was about ensuring a pain free death where there is a terminal illness or an incurable but worsening illness. We set the criteria by which we would judge whether to act to perpetuate life, or not. In essence, it was defining the circumstances under which life would not continue.

I’m no expert or legal maestro, but it seems to me that there has to be a way of legitimising what is a fine line between this kind of end of life management and assisted suicide where a terminally ill person is clear about their wishes, as in the Nicklinson case, without compromising the lives of people who are coming to the end of their life in less harrowing circumstances. As an atheist, I do hope that some path can be found without being influenced by religious dogma. And, I hope it can be found before the next terminally ill person comes along who is forced to follow the tortuous path taken by Mr. Nicklinson and his family.

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