the end of life / ending life / life

It’s now two weeks since I was really challenged by a conversation with a friend, over our Wednesday evening pint, on the issue of whether people in certain situations should have the right in law to ask someone else to end their life.  The friend was passionate and forceful in a very personal argument.  He did not want to end up ‘lying in his own shit’, aware of his indignity and uselessness but unable to do anything about it and simply a burden on those around him.  I was taken aback somewhat by the power of that highly personal, strongly felt, individual advocacy.  It troubled and disturbed me and has exercised my thinking greatly over the past fortnight.   An unintended consequence of our medical progress is that a much larger number of people now survive with reduced capacities, unable to be the people they may want to be, or, in the case of dementia, seemingly unaware of, or increasingly disconnected from, the people they were – often a cause of great distress for those close to them.  Since the changes may in certain cases be gradual, the initial stages can be even more difficult, as changes in character and behaviour may be attributed to the person, rather than the illness, putting pressure on relationships, hurting and challenging.

This conversation happened the same day as the Nicklison judgement (   click here ), although we were unaware of that case at the time.  The reason that we had got into the discussion was that I had been recommending that my drinking pals listen in on the inspirational life of Jane Campbell (click here ) , twice about to have the ‘lights put out’ because doctors assumed that it would be merciful to do so given the extent of her disabilities.  Another friend, joining in the discussion, widened the discussion by linking the argument to the general movement in recent years (fertility control, abortion…) to accord to individuals the right to choose what happens to their own bodies.

My more ‘detached’ position (after reflection I realise not as detached as I perhaps thought) was that all ‘individual rights’ have social consequence for others.  Such discussions cannot just be about what an individual wants – changes in the rules by which we live affect every individual.  Here were my arguments (more or less):

(1) there are currently far too many risks in according such rights, simply because a number of strong, forceful people want them.  The risks are to those less forceful or more vulnerable people who, placed in a situation where they had to make a choice, would succumb to pressure from others with a financial or other motive (“why should we spend her money on keeping her alive when I could be using it much better?”).  This argument places a very high value on the ‘safeguards’ built into any proposed ‘right to life’ scheme.  I’m not convinced those safeguards have been sufficiently thought through.  My friend did not see a need for safeguards as in his view, every adult (I assume he meant those with legal capacity) can choose freely and would not be influenced by others in such an important choice.

(2) we have no hope of reaching a consensus on which individuals/groups should be accorded such rights – people over a certain age, while still in possession of their faculties (‘living wills), stating what they want to happen if they end up in a certain condition?  people of any age, suffering from what some might view as unmanageable disabilities?  people who feel that they are a burden on others and suffer psychological distress as a result of this.   In Holland, where assisted suicide is now allowed in specified cases, a lobby group now wishes to open this up to anyone over 70 – but why stop there, why not 65 or 60; why not open it up to anyone?  Once the principle has been conceded, a ‘slippery slope’ awaits.  In any event, what happens where a person has signed away their life while they had capacity, but, lacking capacity (for example, through dementia), changes their mind?

(3) my predilection to argue against ‘utility’ as a principle:  we should not measure a person’s value according to whether he or she is judged to be ‘useful’ to society or to others in some practical, outcomes-measured way (economic value, practical value in day-to-day activity, negative value in that others are diverted into care from potentially more rewarding activities).  Framing the discussion in these terms leads to the wrong kind of discussion.  Life has an intrinsic value – in the language of utility, it has unpredictable and unmeasurable consequences and outcomes.   Not the least of these is the way in which the ‘able-bodied’ come to understand life better through their care for and relationship with those at the edge of death.

(4) there is, I argued, a difference between not intervening medically when a person is on the verge of death and actively causing the end of life.  It is a line which many doctors now walk with care, in conversations with relatives.  We currently have systems, forms, permissions in care homes and hospitals around the country which help us to manage that line.  Occasionally, where disputes arise, the courts interpret the application of existing laws with careful scrutiny of the cases.  To me this is a respectful and appropriate way of handling the complex consequences of our medical skills.

There are many caring and compassionate people on both sides of this debate.  Here are some examples:

Assisted dying: the harm in helping Sarah Woolaston (GP and MP).  Click here

Graeme Catto’s analysis of the legal situation:   click here.

Dignity in Dying website:  click here

The reason I am less detached than I perhaps thought is to do with my experience of the slow ageing of my mother and my mother-in-law before her, as dementia caught them in its hard hands.  Knowing how much of a gap, in physical abilities, in conversation, in control, there is between the mother I see now and the woman she was, I grieve through the slow death, over many years, of the woman who has been lost.  Yet I recognise her life as a kind of circle as she relives childhood, returning to the innocent, dependent incapacity of a baby – the freshness of each day, each new experience unencumbered by memory and regret, unconcerned with where the next meal will come from, how much is saved in the bank, what happened yesterday.  I am also grateful that she is still here, grateful for her smiles, grateful for the occasional sparkle in her eyes.  Yet, thinking of her slow decline, I joke with my friends that ‘it would be better if we could all just nominate a date as our time to go’.  I think of my mother-in-law, a proud and capable woman who was horrified at the thought that she might end up like the once-respectable neighbour at the end of her street who appeared in the street in her nightdress.  She too ended her days in a less dignified and controlled way than she lived them and yet her humanity was enriched by this more vulnerable self.

I invariably add ‘the trouble is that when we get to that date we nominated some years ago, we might well want to nominate another date.’  At 20, I thought 60 was unimaginably old.   Like Achilles chasing the tortoise, we never quite catch up with our destiny.

I have felt washed out by this internal conversation.  On the one hand, I cannot help but feel compassion for the argument of the individual, listening to the voice of my friend and his impassioned personal pleading, thinking of the once powerful adults reduced in later life to shadows of who they were and the passion with which Tony Nicklison hated his life  (  click here ).  Perhaps there is a law, with appropriate safeguards, that can be made to work as an ‘acceptable compromise’ between Tony and me.  On the other hand, I still believe that if we concede the right to some individuals to ask others to end their life within the law, we diminish our civilisation; we move another step into a human future where life is valued for what it does rather than in itself.

It may come, but I’m still with Jane Campbell, not Tony Nicklison on this one.

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