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Death by design

We enjoy unprecedented control over how we live. Should we also control the way we die?

By Larry Krotz

Every once in a while something flares in the culture to point out either a hypocrisy or a possibility. The 2004 Oscar winner for foreign language films was a movie from Quebec director Denis Arcand titled The Barbarian Invasions. In it Sebastian, a hot-shot who has become wealthy in the investment business, takes charge of Remy, his 50-something father, suddenly terminally ill with cancer. Using his money and his creativity, Sebastian rescues Remy from the Montreal hospital system where patients are parked in overcrowded corridors; essentially builds a private hospital room for him; brings in a series of colleagues and even old girlfriends for a never-ending party; scores enough heroin to manage his ailing dad's pain; and finally carts everyone off to a beautiful cottage for a wine-sloshed and reminiscence-filled supper topped with enough heroin to provide the coup de grâce.

It was a fantasy to be sure. Suicide in the real world is widely considered immoral, a crime against God or at least against life. And with the exception of a handful of jurisdictions, helping it happen is against the law. In Canada, assisting in a suicide contravenes section 241b of the Criminal Code and is punishable by 14 years in prison; if you are a physician you will both lose your medical licence and go to jail. Yet Arcand's film made appealing sense: how nice it would be to be able to provide something like that to our own ailing parent. Or have it done for us when the time comes.

My own mother, reaching her waning years, often said that she knew exactly how she wanted to die. In her own bed in her own home. However, as her eyesight dimmed, her hearing diminished and breathing became possible only with the assistance of an oxygen machine, my brother and I, obsessed with concerns for her well-being and safety, pressed the option of a seniors' retirement home. A couple of months before her 89th birthday, she relented. Which was, of course, when the real nightmares began. After barely a month, she lurched into a collapse that included a painful osteoporosis stress fracture, congestive heart problems, disorientation and enormous discomfort.

Intensive hospital care was followed by six weeks in a high-level nursing home, where the staff did everything, including spoon-feed her. Then she died. Would that it had happened six months earlier?

Not that it could have been different. Like many of her generation, my mother was a stoic. Buoyed by a sturdy, religious faith, she accepted what came. Suffering was one of life's gifts and then, finally, you died. I can't say I feel the same way. Which doesn't mean I know what exactly I might do. But now that I am in my 50s, the end of my life -- still distant though I might hope it to be -- forces me to consider things that used to be merely abstract.

In public discourse, issues around the right to die tend to ebb and flow. A decade ago, the news was filled with Dr. Jack Kevorkian who admitted to assisting up to 70 suicides and permitted the television program 60 Minutes to show him injecting patient Thomas Youk with potassium chloride. Now Kevorkian languishes in a Michigan prison. At about the same time, Vancouver's Sue Rodriguez waged her very public bid for help to end her ALS-plagued life, going all the way to the Supreme Court, which rejected her 5-4. Eventually, she took her own life anyway and those who aided her have never been found out. However, none of these highly public episodes carried society over the hump of achieving what activists most want: broad legal approval for physicians to assist suicide when requested.

It should be no surprise, given the volatility of the topic and the fact that those opposed are also organized and vocal, that lawmakers keep their distance. The closest Canada came to changing our laws was a private member's bill sponsored by Francine Lalonde of the Bloc Québécois, which made it to committee before the last Parliament was dissolved. She is about to reintroduce it. A decade ago, in 1990 and again in 1999, a committee of the Senate looked at the question of assisted suicide and recommended that the status quo be maintained.

At the same time, something is about to happen not through organization but through the momentum of history that could well change the dynamic entirely. The baby boomers are getting old. That huge bubble in the population, which includes people like the character in Arcand's film, are now about to enter the years of their mortality. Nobody can say for sure how they will face old age and death. But this generation has always placed freedom of choice and self-determination on a high plane. Used to getting their own way and, in turn, taking for granted that what's important to them will also be at the centre of the political and social agenda, baby boomers possess both a sense of entitlement and an impatience with delayed gratification or unnecessary suffering. So, if the mantra that you control your own life has always been writ large, why not your own death? What is to stop boomers from pushing forward an agenda for designing their own exits?

The lobby to change political minds and cultural attitudes is now about 25 years old. Still small in numbers, it makes up for that with a certain tenacious passion. A cursory search reveals both domestic and international organizations that have taken it upon themselves to gather like-minded people and even offer practical support. The predominant group in the United States not long ago changed its name from the Hemlock Society to the more muted Compassion and Choices. With headquarters in Portland, Ore., and Denver, as well as 90 chapters, it has scope and reach -- not to mention 50,000 members. In Canada, there are two organizations of record, both Toronto-based: Dying With Dignity and the Right to Die Society of Canada. Since 1980, an international umbrella, the World Federation of Right to Die Societies, has been bringing everyone together for biennial conferences, the most recent of which, last September, took place in Toronto.

In a euphemism-laden business, the operative term for suicide among these Right to Die people is "hastening." If one doesn't want to adhere either to the natural process of illness or accept the life-extending services of advanced medicine, one "hastens" one's death. In the absence of a legal right for physicians to be present and assist, however, this is a haphazard, do-it-yourself undertaking. The arguments for physician assists, one could easily say, would not so much lead to more hastenings as make those that already take place in a kind of underground of civil (and religious) disobedience more humane.

Suicide is rarely easy and is often messy with a high risk of things turning out badly. When a friend I will call Robert (these names have been changed because what was done was illegal), 46, became ill with AIDS in the early 1990s, he decided early he was going to die on his own terms. This was not an impetuous decision. His partner, Donald, had been a member of the Hemlock Society and was firmly rooted in beliefs about a person's rights over his or her life and death. Donald and Robert discussed the matter and both agreed. It was an open secret in the gay community, Donald says, that about half the deaths from AIDS, which was at its height then, were in fact suicides.

As Robert's illness got more debilitating, he was prescribed morphine. Each week -- in a sock in the bottom of his bureau -- he began putting a little aside for the moment he would decide to use it all at once. He had volunteered in Dying With Dignity's offices and had learned approximately how much morphine he would need as well as additional tricks, such as taking it with vodka. He was open about his project with his closest friends, his sons (who were in their late teens) and his doctor. The doctor was sympathetic. "He told us," Donald recounts, "as long as I don't find a pillow over your face, the death certificate will state simply that death was AIDS-related."

Robert's moment came just after Easter. Weak and miserable, he was consuming little food other than sucking on ice cubes. On Sunday evening, he called those close to him to his bedside to say goodbye, then asked Donald to bring his bottle of vodka and his pill sock. Donald had been cautioned not to hold the drugs or the vodka up to Robert's mouth if he wanted to avoid liability. He left the room, closed the door and with the friends and family, waited.

At this point, something happened that leaves Donald shaken to this day and confirms his belief that this should be taken out of the hands of those who would do it themselves: the enterprise went wrong. Or, more precisely, their planning proved inadequate. Robert ingested his drugs and fell into a coma. But he did not die. By morning, he had regained semi-consciousness. "When he realized he was still alive," Donald recounts, "he was furious." Not knowing what to do, they called a nurse who arrived with a supply of fresh drugs and disappeared into Robert's room. "It should all be over in an hour or an hour and a half," she told everybody. However, once again Robert's fortitude and the imprecision of their plan fooled them. Twenty hours on, Donald, unable to stand it any longer, went into the bedroom and placed a pillow over his partner's face. "That's the most loving thing anyone could ever have done," a close friend told him.

Donald retells this story nine years later. Now 66, he still believes in and is committed to controlling the end of his own life. But because of the experience with Robert, he doubts that pills will be his vehicle of choice. What he calls their "48 hours of hell" was still, he believes, the right and necessary thing to do. However he deeply regrets how it was botched. And he regrets that nothing has changed. Still today no physician in the jurisdiction where they lived could legally help them do it right. "He and I shouldn't have had to go through all that," he says. "There should have been a mechanism in place."

Dr. Rob Jonquiere is a handsome man with a bushy head of greying hair. When I tell him the Donald and Robert story, he nods with a grimace of familiarity. In the Netherlands, where Jonquiere is the president of NVVE, that country's 100,000-member right to die society, Robert would have been provided what the doctor terms the "gold standard" of euthanasia: a heavy dose of barbiturates followed by muscle relaxants. He could have been attended by his family physician and would have died peacefully within an hour with none of the ensuing misery for himself or for his friends.

Only four jurisdictions in the world permit this kind of physician-administered euthanasia, the Netherlands being one of them, the others Switzerland, Belgium and the state of Oregon. All arrived at their new laws recently, and none without substantial struggle. In the Netherlands, it took 30 years to move from a kind of patchy civil disobedience (for decades the Dutch medical association, which supported the movement in principle, found itself alienated from world bodies) to a law passed finally in 2002. The law takes pains to be exceedingly careful: euthanasia, defined as the deliberate terminating of life by someone else on the explicit request of the person involved, remains a crime unless it is carried out by a doctor adhering to a strict procedure. The request from the patient must be voluntary and well-considered; patients must have unbearable and hopeless suffering; a euthanasia statement must be signed; and the action must be reviewed after the fact by a review committee.

The legalizing of physician-assisted suicide in Oregon began as a citizen-initiated referendum in 1994, which, after it passed, led to the state legislature's Death With Dignity Act. Physicians now may assist upon the request of a patient who is clearly within six months of the end of a terminal illness. The Oregon road has been bumpy, however. Immediately after the law was passed, the National Right to Life Association initiated a court challenge which, in 1995, got the act declared unconstitutional. Oregonians put it straight back on the ballot and in 1997 defeated the repeal by a margin of 60-40.

When the Bush administration came to power, however, the feds weighed in with then-Attorney General John Ashcroft ordering the Drug Enforcement Administration to prosecute doctors and pharmacists who participated in hastening a patient's death. Ashcroft also attempted to prohibit the use of federally licensed pharmaceuticals for that purpose. The State of Oregon, the DEA and the Department of Justice have been in court ever since. (In April 2002, Judge Robert Jones ruled in favour of Oregon but the Justice Department appealed; the dispute remains in the courts.)

In Canada, Dalhousie University law professor Jocelyn Downie, who argued for decriminalizing euthanasia and assisted suicide in a 2004 book, Dying Justice, believes our present legal situation is confusing for both health care providers and sick people. "People," she writes, "are dying in excruciating pain because they are not being given adequate pain medication. People attempting suicide fail and end up in worse shape than before their attempt. People taking desperate steps to help their patients or loved ones are finding themselves facing the potential of imprisonment. People refusing life-sustaining treatment are being forced to stay alive in situations in which they think that life is no longer worth living. People may be committing suicide earlier than they would if assisted suicide were legal because they fear getting to that point where they would need, but would not have access to, assisted suicide."

The only religious community in Canada formally endorsing the right to die is the Unitarian Church. But a retired United Church minister, Rev. Don Johns of Guelph, Ont., says he has been a member of Dying With Dignity for 20 years and is now one of their counsellors. "In the pastorate," he recalls, "I would encounter parishioners who would say, `I've had enough, I really wish I could go,' and there was no option for them. We have options around birth that are all acceptable, we can have a C-section, we can induce. But at the other end of life, I watched people endure their debilitation and the burdens on their caregivers."

Those opposed to physician-assisted suicide have strongly held concerns that need to be recognized, and the most serious right to die advocates appear to do so. Dr. Jonquiere attempts to address worries that euthanasia would be carried out on defenceless people, such as those with disabilities, as well as the "slippery slope" of it getting out of hand and "everybody wanting to do it." In the Netherlands, he states, only 2.5 percent of Dutch deaths are doctor-assisted euthanasia, some 3,500 a year. Furthermore, he argues, "The assisted euthanasia possibility tends to lengthen rather than shorten life. Knowing that the solution is available, the patient is often more willing to endure the present suffering and in a better state of mind." Euthanasia, he goes on, could not exist without a good palliative care system and a good palliative care system has to include the possibility of euthanasia. "We doctors are not ending life so much as we are ending suffering." The Dutch public seems to agree. Four years after its legalization, 90 percent of Dutch people support the system.

The ongoing debate within the right to die movement in Canada, according to Dying With Dignity executive director Don Babey, is whether to strategize to get laws changed or to adopt the line that choosing when and how to die is a human right and simply to get on with helping any who want to do it. "We are still looking for the proper model," he says. The much smaller Right To Die Society of Canada -- with 400 members in contrast to DWD's 3,000 -- continues to exist, according to its director, Ruth von Fuchs, in order to provide a counterbalance to DWD, which she considers to be too "conservative and proper." Believing that the law is not going to change anytime soon, von Fuchs sees her organization's mandate is to "give people the kind of advice they need to look after themselves." They also resist tying themselves to an issue that divides the movement: the strict necessity for a person to be in deep stages of terminal illness before suicide is considered an acceptable option.

Were physicians permitted to offer assistance to those of sound mind wishing to end their lives, 75 percent of Canadians "would already be in agreement," according to Cynthia St. John, a board member and former executive director of Dying With Dignity. This level of support, she says, is consistent with polling by the Angus Reid organization. Nobody, however, fools themselves that this largely passive support will automatically turn into a movement toward actually changing laws -- except for one thing: that elephant in the room, the baby boomers poised to create what one U.S. study termed "the first-ever mass geriatric society." University of Toronto economics professor David K. Foot, author of the influential Boom Bust & Echo, finds it completely understandable that the issue of assisted suicide landed on the table in Europe and Japan first. "Those populations are older. The North American baby boomers," he says, "are just entering their 60s and are still primarily concerned with living. They are dealing with the deaths of their elderly parents so are very aware of death but still not planning for their own."

However, when that time comes, Foot believes, there will be high demands on whatever is available in society to meet what the baby boomers perceive to be their needs, and high pressure to make some changes, not least because of soaring health care costs. "We may not worry about it for another 15 years," he says, "but absolutely we will worry about it then."

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