The Sunday Times, Uncategorized

August 1st, 2004

Death isn’t the worst thing in life, and we deserve a choice

Until recently there were only two certainties in life — death and taxes. Taxes were left to the politicians and death was left to providence or to fate. Now there is only one certainty, because death has become ambiguous, and besides we no longer leave it to providence.

Science and technology have made it easier to monitor — but much more difficult to understand or decide about — the process of dying, or even exactly what we define as the moment of death. Precisely because we know so much more, it has become more and more difficult to agree on when life has ended.

Equally, ideas have changed about when precisely life starts. There are those who are troubled by stem cell research at the microscopic beginning of life. Questions of life and death are no longer left entirely to deities or to experts; they are questions we now all ask, and more and more, people expect the right to decide the answers for themselves.

Many people will remember the very sad case of Diane Pretty in 2002, a terminally sick woman facing a very unpleasant death who longed for the right to be helped to die. She fought extremely bravely through the courts, ill though she was, and in the end she lost – both the legal battle and her life; she died as she had so much feared.

There were many people at the time, including me, who felt she should have been able to choose the moment of her death, probably through an overdose of anaesthetics, under very controlled circumstances, but necessarily with the assistance of a doctor or nurse. The law said no.

The law was wrong; the wishes of the individual should come first, particularly in a case like hers where all reasonable counter-arguments could be met. Besides, what she wanted is more or less what has happened up to now anyway, in many, many cases, but informally and therefore not as a legal right.

I can’t count the number of friends who have told me with great gratitude that their elderly mothers and fathers were gently eased out of life, and out of the great pain and distress of a terminal illness, by a good doctor who genuinely wanted the best for the patient and listened carefully to all concerned.

Upping the painkillers to lethal levels is in effect mercy killing, and if done with all due respect, it is truly merciful. Diane Pretty was wronged.

However, these things are never simple. There are hard cases the other way too, like the case in the High Court last week of Leslie Burke, a postman from Lancaster who is terminally ill with a degenerative disease.

His fear has been that at some point in the course of his disease, after he has become unable to move or speak, doctors will withdraw artificial nutrition and hydration (ANH), without which he would die.

Mr Burke does not wish medical people to decide upon the hour of his death; he doesn’t want ANH to be withdrawn at all.

On Friday he won his battle; the High Court ruling on his case has now made it significantly more difficult for doctors to withdraw life-sustaining treatment from seriously ill patients.

Until Friday, doctors had discretionary powers to withdraw such treatment, depending on their judgment about a patient’s quality of life. But naturally enough it is possible that a patient who could not speak or move might have a different view from the doctor’s about his quality of life.

As the old joke has it: “Who on earth would want to live to 103?” And the answer is “Anyone of 102”.

It must be quite terrifying to imagine that when you become unable to communicate, but are possibly still conscious or wishing to live, or are simply determined to leave your departure from life in the hands of God, somebody can take away your life-support system.

Now, as a result of the Leslie Burke ruling, this will be very much less likely. Guidance to doctors from the General Medical Council will have to be redrafted. Where a patient has made no living will, doctors will be able to withdraw life-sustaining treatment only according to a much more rigorous standard of whether the patient’s life has become “intolerable”.

And if there remains any doubt, the judgment adds, the question should be resolved “in favour of the preservation of life”. Naturally enough, Mr Burke is very pleased with Friday’s decision, and it is very easy to understand why, and to sympathise with him.

All the same, I do not think this is a ruling that will do anything for the freedom of the individual to decide for himself the hour of his death, when what he wants is to die.

The “intolerability” of the judgment is as long as the proverbial piece of string, just like “quality of life” — so no progress there in either direction. The problem is that, where there is any doubt among doctors and nurses about whether treatment should be withheld or withdrawn, the question should be “resolved in favour of the preservation of life”.

What’s more, the judgment adds that where there is no consensus among professionals, or relatives and carers, any decision must be authorised by the courts.

It seems to me that while it is good to return power to the patient in such cases, it is a mistake to reduce the power of families and to add to the power of the courts.

No case is like another, and there are already plenty of safeguards against high-handed and unthinking practice. What this really means is bad news for people who wish to be helped to die when the time that is really appropriate — when life becomes intolerable — comes.

Already they have been denied the reasonable legal right to do so, as Diane Pretty’s case so painfully demonstrated. Now it will be much harder for doctors to help them unofficially (extra-legally or scarcely legally or maybe illegally) — something I myself have been counting on if need be, for myself and for people close to me.

I understand the fears of the disability lobby, about a hidden wish to get rid of people. It is true that some seriously ill people are seen pretty much as bed-blockers, and that must be resisted.

However, death is not the worst thing in life. And those who choose death should not be prevented from doing so by the anxieties or the squeamishness of those who feel differently.

I say squeamishness because I think there is a semi-conscious, rather censorious distaste for those who do not value life at almost any price (I mean their own lives or their unborn babies’ lives).

Perhaps in this country it is one of the last remnants of Christian teaching. But there are other traditions, such as stoicism, that are no less moral than Christianity, no less scrupulous, but which take a different view of life and death.

We know not the day and we know not the hour, but if there are any decisions to be made about death, we certainly do know who should make them.