x Abu Dhabi, UAESunday 21 January 2018

At the end of life, what is dignity?

The assisted suicides of a British couple have stirred a fresh debate on the ethics of voluntary euthanasia.

The campaigner Debbie Purdy, with her husband Omar, has taken her case to the House of Lords.
The campaigner Debbie Purdy, with her husband Omar, has taken her case to the House of Lords.

LONDON // When Sir Edward Downes and his wife, Joan, held hands for the last time, sipped their cocktails of lethal barbiturates and lay down to die in a Swiss clinic, their declared intention was to put a dignified end to the pain and misery of lives blighted by disease and disability. But the choice made by so prominent a couple - Sir Edward was formerly principal conductor of the BBC Philharmonic Orchestra, his wife had been a ballerina, choreographer and television producer - was also the latest in a series of events triggering intense public debate on assisted dying.

Sir Edward and Lady Joan are among an estimated 117 UK citizens to have made final journeys to the Dignitas clinic in Zurich, where it is not a crime to assist someone to die. Up to 1,000 people of all nationalities are reported to have died at the clinic, in reality a succession of Zurich apartments used for the suicides, since Dignitas was founded in 1998. But the circumstances of the double suicide are troubling even for some who are campaigning for a relaxation of the law in Britain, where helping someone to commit suicide is a criminal offence punishable by up to 14 years in prison.

For while Lady Joan, who was 74, was diagnosed with terminal secondary cancer in the liver and pancreas earlier this year, and had apparently been given only weeks or at best months to live, her 85-year-old husband, though frail and increasingly blind and deaf, had no life-threatening condition. According to his son, he had simply "had enough" and wished to die in peace with his devoted wife. Dignity in Dying, the campaign group most identified with demands for a change in the law, wants the threat of prosecution removed only from those who help the terminally ill and mentally sound to die. This would not have spared the son and daughter of Sir Edward, who accompanied their parents to Dignitas.

The history of Dignitas, founded by Ludwig Minelli, a Swiss lawyer, in 1998, is dotted with controversy. Although the issue arouses passionate argument in other countries, Britain has been the source of some of the highest profile cases, including those of people who were not terminally ill. Last year, Daniel James, 23, a rugby player, opted to die at Dignitas rather than face life in a wheelchair after he was paralysed by an injury in training.

"He couldn't walk, had no hand function but constant pain in all of his fingers," his mother, Julie, said at the time. "He was incontinent, suffered uncontrollable spasms in his legs and upper body and needed 24-hour care. While not everyone in Dan's situation would find it as unbearable as Dan, what right does any human being have to tell any other that they have to live such a life, filled with terror, discomfort and indignity?"

In 2006, Dr Anne Turner, a widowed and retired physician, invited a BBC television crew to accompany her to Zurich after she resolved to die rather than face a wretched future suffering the progressively debilitating effects of a rare brain disease, supranuclear palsy. "I don't feel I have a very good quality of life now," she said before leaving her home in the western English city of Bath, where she would have preferred to die had the law allowed it. Her three children were with her in the flat where the suicide took place; they "joked and laughed and cried" before she took her lethal cocktail, her son, Edward, said afterwards.

Diane Petty, ravaged by the advanced stages of motor neuron disease, also wished to die at home. She fought a legal battle for her husband to help her commit suicide but lost in a case that went from the British courts to the European Court of Human Rights. In the event, aged just 43, she died in a hospice less than two weeks after the final judgment. In the cases of Daniel James and Dr Turner, as in all others where people have travelled to Switzerland to end their lives, no charges were brought, prosecutors having ruled that while evidence exists to bring accompanying family members to trial, no public interest would be served by doing so.

What that means, said James Harris, head of campaigns and communication at Dignity in Dying, is that no jury would convict someone for an act of compassion to end the suffering of a loved one. Instead of this "decriminalisation by stealth", he said, the law should be altered to state what is acceptable and what is not. "It is understandable that people should go abroad to die who are not terminally ill, but as a society we need a clear set of rules and to draw a line."

Sir Edward and his wife travelled to Zurich on July 7, the same day that a British peer, Lord Falconer, failed in an attempt to amend the law to ensure that no one assisting in a loved one's suicide could face prosecution provided two doctors were "of the opinion in good faith" that the patient was terminally ill and mentally competent to choose to die. In what opponents of assisted suicide call one of the most emotional speeches heard in the British parliament in recent times, Lady Campbell of Surbiton, speaking from a wheelchair and receiving help to drink water, spoke out against change.

A victim since birth of spinal muscular atrophy, she said: "I tick every box of Lord Falconer's criteria to die. I could go tomorrow and, believe me, I would have no trouble in persuading two doctors. Three years ago, two doctors persuaded me it was time for me to go on my way. It takes extraordinary will to rise above these views, especially when such views are held by loved ones." Lord Falconer's proposal had already attracted firm opposition from the British Medical Association, religious leaders and senior legal figures.

The BMA said improvements in palliative care allow patients to die with dignity. It insists that if the law is eventually changed, there must be "clear demarcation between those doctors who would be involved in it and those who would not". Debbie Purdy, who suffers from primary progressive multiple sclerosis and campaigns for patients' right to choose has taken her case to the House of Lords, Britain's highest appeals court, where she has requested the law clarify whether those who accompany their loved ones or relatives to places such as Dignitas to die would be prosecuted.

A sensible law, she said, would reflect the Swiss model, where legal protection for applies except where there is "selfish interest" in assisting a patient to die. Ms Purdy, whose illness was diagnosed 14 years ago, is wheelchair-bound but has no idea how her illness will progress. She describes herself as a resolutely independent woman who "wants to have choice about how and when I die. Should living become unbearable to me, I want to be able to ask for, and receive help to die with dignity."

Now 46, she is not certain whether, if it came to such a choice, she would tell her husband, Omar, a Cuban violinist with the Quincy Jones band, or travel alone during one of his absences on tour. She does not want to place him in legal danger, but feels as strongly that he has a right to know about anything affecting both of them. And while Ms Purdy accepts that her condition will never get any better, she also cannot be sure that it will significantly worsen.

"I went from jumping out of aeroplanes in parachutes and water skiing to being unable to cut my own toenails," she said. "But I love my life. I love my husband, have great neighbours, friends and family. And Omar thinks he can stop my life becoming unbearable by always being able to make me laugh and stop me feeling sorry for myself." crandall@thenational.ae