It is time for the law to allow dignity in dying

Tony Nicklinson, who last week lost his fight for the right for doctors legally to end his life, has died. As well as finally giving him some peace, it must be something of a relief to his family who have had to watch him suffer for too long. I cannot even imagine what life was like for him, although I suspect he would have hesitated to describe it as a ‘life’.

Of sound mind, but suffering an existence he described as ‘intolerable’ following a stroke seven years ago that left him paralysed with locked-in syndrome, he had applied to the high court for a legal declaration that his doctor would not be prosecuted if he gave him a lethal dose of painkillers.

Tragically, if unsurprisingly, three judges ruled it was not their place to ‘usurp the function of Parliament’ by effectively changing the law on assisted suicide.  Even though Nicklinson could only communicate by blinking, there was no mistaking his reaction to the verdict.  Intruding on this moment of intense grief and distress was painful and only made slightly more bearable by knowing he and his wife had wanted us to see their anguish.

If such despair is difficult to comprehend, it was impossible not to sympathise with Nicklinson’s wife Jane when she accused the courts of cowardice and of ‘passing the buck’ back to politicians who have even less enthusiasm for the issue, only debating it once in nearly 40 years.  The chances of Parliament changing the law are remote and it is surely a blessing that her husband did not have to wait for that possibility.

The legal impasse appeared to leave only two options open to Nicklinson:  enduring the ‘torture’ of his life, possibly for 20 years, or painfully starving himself to death, neither of which strikes me as the better one.  If he no longer has to make such a gruesome choice, tragically others probably will.

A second case, rejected with Nicklinson’s, concerned Martin, also paralysed with locked-in syndrome, who wanted clarification as to whether doctors would face prosecution if he were to starve himself to death and they only administered pain relief rather than sectioning him under the Mental Health Act so as to force feed him.

As difficult as they are to think about, these are questions we shouldn’t avoid, if only because as time goes on more and more of us are likely to be affected by them.  Medical advances, so welcome in other areas, are prolonging our lives to such an extent that many of us are likely to end our days in pain and indignity, unable to move, eat or even speak for ourselves, returning to the helpless state in which we came into the world.

If the ethical questions are difficult, the legal and political ones should be easier to address.  Although suicide is no longer a crime in England and Wales, it is still an offence under the Suicide Act 1961 to ‘aid, counsel or procure the suicide of another’ and the penalty is up to 14 years imprisonment, although the Director of Public Prosecutions recently stated that family members or close friends motivated by compassion are unlikely to be prosecuted for assisting a suicide.

On the face of it, this would seem to provide vital safeguards to protect the vulnerable while showing empathy and understanding for distraught families, but things are never as black and white as we would like them to be.  Tony Nicklinson didn’t fit neatly into this rubric, saying in his evidence “it cannot be acceptable that I am denied the right to take my own life just because I am physically handicapped”.  Or what if there is no-one who feels able to help a loved one die, however much they might support their decision to end their life?

It’s probably a bit far to suggest this constitutes discrimination, but this is by no means the only contradiction the law throws up.  Equally absurd is the predicament into which the law puts many of the terminally ill by, in effect, requiring them to kill themselves long before their lives become unbearable.  And if you think about it, despite their obligations under the Hippocratic Oath, doctors make decisions about life and death all the time.

The court of protection is due to rule in a dispute between the family of a man left in a vegetative state after a heart attack and the NHS trust providing his care.  Doctors claim it is not in the man’s best interests to provide him with ventilation or resuscitation if his condition worsens; his family disagree and argue he would never agree to such an order due to his Muslim beliefs.

In contrast, lawyer Robert Tobin recently had to advise doctors they must let a 22-year-old Jehovah’s Witness die of sickle cell anaemia, even though he wanted to live, because his faith prevented him from accepting a blood transfusion.  The man had full capacity to make the decision, however irrational it appears, and doctors had a duty to abide by it.

Tobin himself highlighted the discrepancy in the law that in this case required doctors to let a patient die, but at the same time forbids them from assisting those who want to end their lives, explaining that “there is a subtle distinction between a patient’s right to life and a patient’s right to die”.

It’s a distinction many of us would find difficult to appreciate and I can only assume it is that where one patient dies without treatment, another can exist indefinitely, albeit intolerably, with a condition that isn’t necessarily terminal.  If it’s a disparity doctors can recognise in law, ethically it is much more troublesome.

I have no time for the religious who fear changing the law would lead to a massacre of the tiresome old or undesirable disabled.  I don’t believe it would happen, and anyway why should those who profess compassion but seem blind to the suffering of people like Nicklinson always have the last word?  This seems even more incongruous when opinion polls consistently show more than 80% of the public support a change in the law. 

Over the last few weeks, witnessing the torment caused by locked-in syndrome and similarly tragic conditions has forced me to get down from my fence perch and support the Dignity in Dying campaign.  I can only hope I am not the only one and that Tony Nicklinson, may he rest in peace, did not die in vain.