BOOK EXCERPT

Dying in the shadows

Modern death has become a wrenching political dilemma, one that grows more pressing as the population ages. A Good Death confronts our fears about dying, our struggle for meaning, and our dread of being trapped by voracious medical technology in a nightmare world that has abandoned caring in pursuit of curing, no matter the cost or the suffering to patients and their families. A Good Death asks the tough question none of us can avoid: How do we want to die?

Sandra Martin's book, A Good Death: Making the Most of Our Final Choices, is a 2016/17 Donner Prize Shortlist finalist, one five books picked as the best public policy book of the year.

PUBLISHED :Monday, April 24, 2017 12:00 AM

By the early 1990s, there were right-to-die organizations in more than two dozen countries with several hundred thousand paying members and tens of millions of unaffiliated believers, according to Richard N. Côté in his book, In Search of Gentle Death: The Fight for Your Right to Die with Dignity. “The self-deliverance genie had been freed from its bottle and had taken on a robust, self-sustaining life,” he writes. But opposition from religious, right to life, and disability groups as well as pro-life medical ethicists had also swelled, with sanctity-of-life proponents articulating fears of a slippery slope leading to Nazi-like atrocities against the weak, the vulnerable, and the elderly.

The problem for people who wanted “chosen” deaths was access. The terminally ill who were wealthy, well-connected, or daring could find the means to end their lives, but many others had no choice but to suffer it out. As Ronald Dworkin wrote in “Assisted Suicide: The Philosopher’s Brief” in the New York Review of Books in March 1997, “the current two-tier system—a chosen death and the end of pain outside the law for those with [medical] connections and stony refusals for most other people—is one of the greatest scandals of contemporary medical practice.”

Given the intransigence of politicians and medical associations to accommodate the wishes of a large part of the general public, Côté described how new technology that circumvented doctors was being developed by campaigners he called “euthanasia activists.” The late John Hofsess, founder of the Right to Die Society and the activist who helped Sue Rodriguez mount a legal and political campaign in favour of physician-assisted death in the early 1990s, was the most prominent Canadian in the underground death movement.

Deeply discouraged by the failure of the Rodriguez challenge at the Supreme Court, the Senate committee’s subsequent failure to recommend abolishing the law against assisted suicide, and Parliament’s intransigence in acting on the modest changes the Senate committee had proposed, Hofsess began shifting his emphasis. He morphed the Right to Die Society into an “overground” political action organization and an “underground” service provider for people who had approached him privately for help in ending their lives. He began by producing and selling a nine-part series of booklets called “The Art and Science of Suicide” describing various “self-deliverance” methods, even offering plastic bags equipped with elastic in a sewn-on casing.

  

“I was definitely influenced by [Jack] Kevorkian,” the American pathologist known as Dr. Death, Hofsess told me in an email in July 2015. As a lay person, Hofsess had no access to prescription drugs, which also became true for Jack Kevorkian, after his medical licence was suspended in Michigan. That is why Kevorkian switched to a mixture of helium and carbon monoxide and later carbon monoxide on its own. There were also philosophical and practical differences between Hofsess and Kevorkian. Hofsess went to the client rather than expecting the client to come to him. One of the reasons that Rodriguez didn’t use Kevorkian for her assisted death in 1994, was that she was too sick to fly halfway across the continent. Another distinction was that Hofsess operated in secrecy, unlike Kevorkian, who “wanted attention not for his own gratification but for furthering ‘the crusade’—and didn’t mind in the least if his actions led to another prosecution.”

Between mid-1999 and late 2001, Hofsess and his assistant Evelyn Martens helped eight people die. The clients usually drank a potion containing the sedative Rohypnol, which made them unconscious. “It’s a perfect medication for an assisted death,” Hofsess told me in an email. Martens would apply a mask to the person’s face attached to a helium or debreather canister; once it was secured, Hofsess would turn on the gas. Death was quick and painless and very hard to detect by a doctor or a coroner.

Hofsess’s most famous client was the poet Al Purdy. He wrote Hofsess in April 1999 describing his ill health. He had had prostate surgery; subsequent X-rays had shown a shadow on his lung that was diagnosed as squamous carcinoma. The doctors wanted to operate, predicting they could remove the tumour and leave Purdy with 80 per cent lung capacity. Purdy wasn’t convinced. He believed that “the massive invasion of my body required for its removal would very probably kill me,” given he had celebrated his eightieth birthday the previous December. Even if he survived the surgery, Purdy’s “various old age conditions” made him question whether his “‘quality of life’ would be very elevated.”

On the evening of Thursday, April 20, 2000, a year after Purdy first wrote to Hofsess, the underground Right to Die Society team assembled at Purdy’s house and gave the poet a dose of Rohypnol diluted in a glass of Chilean wine. Once Purdy was unconscious, Hofsess and Martens put a plastic bag over his face, attached the collar and pumped in helium gas through a tube. Purdy died easily and Hofsess and Martens removed all traces of their visit.

  

Unbeknownst to Hofsess, Martens had begun freelancing as a death provider. In 2002, she was arrested and charged with two counts of assisting a suicide. Her home, which housed the Right to Die Society office, was raided. All of the organization’s records, books, and pamphlets were seized, and the covert death service, or as Hofsess liked to call it, the “underground railroad,” collapsed. Martens’s preliminary enquiry, held in Duncan, British Columbia, lasted eight months, from November 2002 to June 2003, followed by a criminal trial in October 2004. A jury acquitted the seventy-three-year-old woman on November 4. Martens never implicated Hofsess as a death supplier, but outside the court she declared her days with the right-to-die movement were over. She died in January 2011, just before her eightieth birthday.

As for Kevorkian, he continued to defy the medical profession and the law until he went a death too far in his defiance. Late in 1998, he provided the American television program 60 Minutes with a film showing him performing euthanasia with a lethal injection to Thomas Youk, a fifty-two-year-old man in the end stages of amyotrophic lateral sclerosis. Youk was filmed on September 17, 1998, giving his informed consent before the procedure. Kevorkian, like Henry Morgentaler before him with respect to abortion, was daring the authorities to prosecute him.

And they did, charging him with first-degree murder. He was convicted and given a sentence of from ten to twenty-five years. He was released on compassionate grounds in June 2007, after eight years in prison, and died four years later of a pulmonary thrombosis. By then, euthanasia had been legalized in the Netherlands, Belgium, and Luxembourg, and assisted suicide laws had been enacted in the U.S. states of Oregon and Washington.

Canada was a different story. Hofsess, who had insisted privately to me that he had been prepared to stand trial and go to prison for helping Purdy die, ended his life in a Swiss death clinic in February, 2016– the very same day that he had arranged for Toronto Life magazine to publish his posthumous article on his role in the poet’s death. The absence of a Morgentaler figure who was prepared to risk prosecution to change the law, the polarizing effect of the Robert Latimer case, in which the Saskatchewan farmer ended the life of his severely disabled and pain-wracked child, the emergence of palliative care as the medically approved approach to dying, and the lack of political will all helped stall the right to die movement in Canada.

  

Furthermore, the rigid regulatory grip exercised by provincial and territorial colleges of physicians and surgeons kept doctors on the approved side in the sanctity-of-life stakes. If they did help suffering patients, they did it in the shadows and kept mum about it afterwards. Those who openly helped patients die when they were in excruciating pain were often reported to the authorities by other members of the medical team. That’s what happened to respirologist Nancy Morrison, a staff physician at Queen Elizabeth II Hospital in Halifax, Nova Scotia, after the death of patient Paul Mills in November 1996.

Mills, a sixty-five-year-old who was suffering from terminal cancer of the esophagus, had a Do Not Resuscitate order on his chart. Antibiotics and tube feeding had been halted, and he had been removed from life support with his family’s consent. He was receiving palliative care, but he didn’t die easily. Despite massive doses of narcotics over an eight-hour period, he was gasping for breath and seemingly in great pain.

Finally, Morrison injected Mills with potassium chloride and nitroglycerine, two drugs with negligible value as painkillers but a known capacity to stop the heart from beating. She was subsequently charged with first-degree murder. At her preliminary enquiry, doubts were raised by her lawyers about the efficacy of the intravenous line that was supposedly delivering the narcotics to Mills. If the line was clogged, then how could the potassium chloride have reached the patient’s heart in order to kill him? That defence was accepted. Morrison wasn’t sent to trial, but she was reprimanded by the province’s College of Physicians and Surgeons for actions that were “inappropriate and outside the bounds of acceptable medical practice.”

And yet that kind of compassionate and interventionist medical aid in dying is precisely what some patients want, including renowned microbiologist Donald Low. In February 2013, one week after a brain scan revealed that he had a midbrain tumour, he began talking with his wife, medical journalist Maureen Taylor, about assisted dying. Even with Low’s connections in the international medical community, and despite his access to potent drugs, he died the death he feared: paralyzed, unable to communicate with his family, and sedated so that he could tolerate the intolerable.

The couple made a video before Low died so the renowned doctor could tell the medical profession that palliative care was fine as a service doctors provided to patients, but it wasn’t so hot when the roles were inverted and the doctor was the patient. “Why make people suffer for no reason, when there’s an alternative?” Low asks in the video. “A lot of clinicians have opposition to dying with dignity. I wish they could live in my body for twenty-four hours, and I think they would change that opinion.”

The video went viral when it was posted to the Internet on September 24, 2013, not only in the media but within the medical profession. Here was one of their most respected members delivering a poignant and public deathbed plea to his colleagues, urging them to think like patients, not doctors. It added an authoritative medical voice to a surging national debate that had reignited in both British Columbia with the Carter challenge to the law prohibiting physician-assisted death, and in Quebec, which had tabled its medical-aid-in-dying legislation in June 2013, three months before Low died.

The battle with doctors over the right of patients to have choices in end-of-life care was far from over, however. Listening to patients about how they want their lives to end is one of the least heralded and most significant instruments in any doctor’s black bag. Putting the interests of the patient first is a key lesson in achieving our final human right: choice in the manner and timing of our deaths.

Sandra Martin’s book, A Good Death: Making the Most of Our Final Choices, published by HarperCollins Publishers Ltd., is a 2016/17 Donner Prize Shortlist finalist, one five books picked as the best public policy book of the year. Ms. Martin, an award-winning journalist and broadcaster, writes the Long Goodbye column for The Globe and Mail. Her previous books include Working the Dead Beat: 50 Lives that Changed Canada and The First Man in My Life: Daughters Write about Their Fathers. Reprinted with permission from HarperCollins Publishers. The Donner Prize winner will be announced in Toronto on May 15. The winner will receive $50,000. Each of the other winners receives $7,500. 

The Hill Times