I wouldn’t wish my father’s death on anyone – assisted dying should be legal in the UK

I would have been so grateful if someone could have shortened my father’s death to save him from great pain, writes Alan Rusbridger. I respect others feel apprehensive about a change in the law, but it is time for MPs to summon up the courage and follow public opinion

Parliament will debate assisted dying laws in the UK this week (Getty)

More than 40 years ago it used to be called voluntary euthanasia, and there was even a sleepy little society which advocated for the cause. It was run by a retired railway union official called Bob. Its members tended to be elderly.

Then something rather dramatic happened. An ambitious young Oxford classics graduate named Nicholas Reed became interested in the issue of assisted dying after hearing a debate. He joined the Voluntary Euthanasia Society (VES) and in no time at all was running it.

He rebranded VES with the rather snappier Exit and, no shrinking violet, started courting publicity with a view to changing the law in the UK. But his fascination with the issue was not purely intellectual. He was running a quiet sideline by which those who wanted to end it all would be helped on their way.

The assistance arrived in the form of a strange unemployed pseudo-psychic named Mark Lyons, who would arrive at the “customer’s” home with a suicide kit. He would sit patiently until his work was done and then let himself out, meticulously recording every death in a series of red exercise books, along with his every meal and every visit to the lavatory.

I got to know both men a little when I covered their trial at the Old Bailey in October 1981. They could scarcely have been more different. Reed was dapper, articulate and (in his own way) visionary, while Lyons was rambling and so scruffy he could have passed for a drunk on a park bench.

Reed was undone by his insatiable urge for publicity, with one TV crew eventually becoming suspicious and going to the police. Both men received jail sentences, though Lyons’s was suspended, having spent some time on remand in prison – during which he offered to help a fellow inmate who had unsuccessfully tried to hang himself.

Lyons told me he was convinced that his actions would, once revealed, help change the law. Of course, the opposite was true. Once the extent of his activities became known there was a wave of public revulsion against the idea of assisted dying.

Many of the people Lyons helped on their way were not in pain or dying from incurable diseases. Some were depressives who needed help – but not the kind that Lyons offered. They included a depressed road accident victim; a suicidal 25-year-old with drink problems; a middle-aged agoraphobic with a paranoid personality disorder. If you feared a “slippery slope” with assisted dying, this pair were the perfect argument for your case.

And then there was my dad. He was 96, a good innings. And as the end neared he politely told the doctors and nurses attending him that they had better things to do than try to prolong his life. He wanted to die, and – as he saw it – they wouldn’t let him.

Our last precious time together was clouded by his growing pain and sense of betrayal: as he became more confused he blamed me and my brother for our failure to persuade the doctors to carry out his wishes. Instead of tranquillity, there was bitterness, bewilderment – and agony. “They wouldn’t treat an animal like this,” he groaned many times. And he was right.

This wasn’t in the script the medics had given us: a “good” death alleviated by the best palliative care. Nature taking its course, only this version of “nature” involved unspeakable pain, only partially relieved by not enough morphine. Gangrene threatened his one remaining leg, already ulcerated. He was too frail for an amputation, but not quite frail enough to die – yet.

Eventually – after much mental anguish and physical contortions – he did fall into a deep sleep and we asked that the medical team remove the drip which could have only prolonged it. A nurse explained that, effectively, he would die of dehydration. There would come a point when his internal organs would pack up.

Though we visited every day, the dehydration finally took its course at a time when neither of us was there. So my dad died alone and we were left wondering why withholding nourishment and treatment as an old man withered away from desiccation was more “ethical” than some form of intervention to help him die at the time, and in the manner, of his choosing.

A little while after my dad died I met Michael Irwin, a distinguished doctor – two spells as a medical director of the United Nations – who had been struck off the medical register for offering to “help” an old friend at the end of his life. He told me many doctors had “twinning arrangements” to help each other when the time came.

“As a society, we’ve gone backwards,” he told me nearly 20 years ago. “My father, who was a doctor, used to talk openly of prescribing barbiturates to patients. He’d say to them, ‘Take one for pain, Joe. Take the whole bottle and you won’t wake up.’”

“When I started as a house surgeon in 1956, terminal sedation was openly discussed in the hospital ward. Now it’s pot-luck whether you end up with a doctor who is prepared to do it – except in hospices, where it’s common practice. So far as I know there’s never been a police or coroner’s investigation into a death in a hospice.”

And so the debate goes on. I recently moderated a discussion between two people I greatly admire: the former Archbishop of Canterbury, Rowan Williams (anti), and the former chief of the Supreme Court, Brenda Hale (pro). Both were heartfelt, intellectually rigorous – and unable to agree on much, except that assisted dying should not be available to people with mental illness.

Nor is it simply a question of religious orthodoxy. In Thursday’s Times were two letters from a retired bishop and a rabbi, both prompted by the upcoming parliamentary vote on whether to make assisted dying legal. The Right Rev James Jones, formerly of Liverpool, argued the state should not be “encouraging a culture that devalues life”. Rabbi Jonathan Romain fundamentally differed: “There is nothing sacred about suffering, and assisted dying is not about shortening life but shortening death.”

I would have been so grateful if someone could have shortened my father’s death. How contented he would have finally been to have family around him while he was still conscious, knowing that his torture would soon end.

I respect that others may feel apprehensive about a change in the law, and the example of Reed and Lyons is a warning of the ethical boundaries that can become blurred – though such figures now feel like back-street abortionists who flourished before the legalisation of terminations.

But my father’s death is not the death I want, nor would most people. I very much hope that MPs finally summon up the courage to follow public opinion and change the law.