The debate about euthanasia (or assisted dying) has come back into focus this week (www.bbc.co.uk/news/health-32893689). Listening to the discussions on the radio reminded me of a piece I had written as part of my Reader (lay minister) training a few years ago. I had been assigned the task of preparing some introductory thoughts for an ethics tutorial. I do not generally regard myself as a particularly good writer but, on this occasion, my words seemed to hit the mark.
Perhaps it was because I was writing from experience of a client who was, at the time, dying from motor neurone disease. My piece for the tutorial was written as a letter to him (though, of course, with changed names and details). It occurred to me this week that it might be worth posting as a blog to this (rather underused) site. So here goes:
My Dear George
I’m glad you asked me, all that time ago, to be around to support and help you when things got worse, though the dilemmas that you have created have not helped my sleep over the past few weeks as I have asked myself what I should say to you.
Having watched your health deteriorate, and the fit and active George I once knew become so frail and dependent, I can well appreciate why you decided to make that ‘living will’ when the MND was in its early stages. I guess I might easily have done the same.
But, oh dear, the more I think about the whole situation, the less certain I become. The issue of whether to carry out the wishes expressed by you at that time is tearing your family apart, and I wonder whether you would still wish the same outcome as you did then. But we can’t ask you, can we; at least, we could ask you but you are not able to tell us.
Part of the problem is that the living will was made so soon after your diagnosis, when you were having the inevitable reactions of fear, disbelief, anxiety about the effect on Ruth and the children, and that real sense of isolation because of the feeling that you were ‘different’. One of your son’s fears is that, when you made those decisions, you might not have been thinking straight, that you paid too much attention on the effect on the family – the sheer pressure of being carers as well as the financial consequences of meeting your needs – and that you gave too much weight to not wishing to be a burden.
Ruth, of course, faces something quite different; the pain of seeing the man whom she loves so much physically disintegrating before her tear-filled eyes. The pain for her is, of course, immense. Her dearest wish would be to see you released from the agonies that you are going through and which she fears will get worse, and she can see no other way to achieve that than through fulfilling the wishes you expressed.
Your condition is, of course, incurable, and it is inevitable that your health will continue to get worse. You know this, and I will not insult your intelligence by lying to you about it. You know that eventually you will find breathing difficult and this is what would bring your struggle against the disease to an end.
Yet, what has surprised me about the way you have reacted since the early days after your diagnosis, is the lack of anger and depression that you have exhibited. You appear to have accepted what life has thrown at you with remarkable equanimity.
So, then, what are choices and issues that should influence you now?
Well, put bluntly, the choice is between the quick exit via the Swiss clinic, or a slower and almost certainly more painful decline albeit with palliative care. Whatever choice you were to make, no-one would judge or condemn you. How does the saying go: ‘Do not criticise a man until you have walked a mile in his shoes.’ And, yes, I remember what you used to add: ‘at least then you are a mile away and he will find it difficult to chase you because he hasn’t anything on his feet’. So, if you get to be able to communicate what you want, it’s your decision mate.
But that’s not what you really want to hear. You want to know what I really think about the issues.
Well, there are various approaches that you could take. You could simply say ‘It’s my life and no one else has any rights in relation to it – it is mine to preserve and mine to end.’ You might add that your hasted parting would bring benefits not only to you but also to your family, who would be spared the agony of watching your increasing discomfort and be spared of the financial cost of your future care.
You might well add that there would be benefits too for society at large with scarce health resources being made available to others with more life – and more productive life ahead of them.
OK, but is it that simple? John Donne’s comments about no man being an island might be relevant. It is easy to think that our choices affect no-one else, but they usually do. Your wife and son are affected by your decision, but so too are others who might have less freedom to choose if your decision, and that of others, makes euthanasia more the ‘norm’ and the expected option. You know that Ruth would never pressurise you for wrong reasons – her only motivation is love – but not every wife is like Ruth… Others might employ subtle (or even not so subtle) pressures on ‘no longer useful’ partners or parents to follow your path, whether it is what they wanted or not.
And there is, too, the element that whenever something that underpins that sense of specialness about human life and dignity is lost or diminished in any way, it wears away part of the central core of humankind and civilisation, and makes less ambiguously evil outcomes more likely.
There are some who might suggest that your life is not yours alone; that you do not have the right to bring it to an end. Whether you focus upon life as sacred or as having dignity, many – even people who do not subscribe to any particular religious viewpoint – see life as being something ‘special and given’ that should not be brought to a premature end. That most religions teach against euthanasia is indication, if of nothing else, of the high value that humankind has always put on human life and its aversion to our taking it into our own hands to end it, even from the most noble of motives. Of course, for Christians (and you were well aware of my faith when you asked me to support you through these times) there is a real understanding that we were made in the image of God, and it is upon this foundation that our belief in the sanctity of life rests.
You asked me once what I thought about suffering – whether I believed that there was something of spiritual value that came out of it. My reaction then was pretty black and white; I really could not see how suffering could ever be good. In some ways, I still feel the same – especially about other people’s involuntary suffering. The thought that your suffering might, in some ill-defined way, be a source of strength and growth seems almost obscene in the light of what lies ahead for you. Yet, I do know that the difficult times in my own life have been the times that I have later regarded as having contributed to such maturity and usefulness as I may now have. Seeing others cope with their suffering has also inspired me. But still I could not in all honesty say that I can imagine anything positive coming from the suffering that you are likely to endure if your son were to be able to stop the process that you have set in train. I cannot offer that as a reason to encourage the alternative to the Swiss clinic.
So, dear George, where does that leave us? I have no desire to see you suffer, and would do anything in my power to save you from it. Yet I cannot encourage you to take the ‘Swiss clinic’ option – not just for your sake, but for the sake of humankind generally. But, if you decide upon that route, I shall not think the less of you as a man or as a friend.
I read this to the tutorial group. It was almost a minute before anyone spoke. You see, for all the theoretical arguments, for and against assisted dying, the reality is, for anyone in that situation, a real life one. And, whatever, our views, we have no right to judge those whose shoes we do not wear.