The Art and Science of Dying Well

       Fifty-five years ago in Vancouver, B.C., a cheerfully confident groom vowed to his bride: "I, Charles Le Moir, take thee, Margaret, to be my wife, to honor and cherish, in sickness and in health...'til death do us part."
       He was 38, a Maritimer of French descent. She was 31; the May day marked her birthday as well. Together they were transformed through a ritual in which he was not merely a fireman, nor she just a secretary, but a mythic man and woman enjoying the smiles of a summer night, the dance of life, and later, the purblind oblivion of flesh cleaving to flesh.
       There is no commemorative photograph of Charles and Margaret on their last night together, in Victoria; only smudged and sketchy details of a long dark night of the soul. Sometime after midnight on Dec. 13, 1990, they bound themselves to one another with a belt around their chests, she sitting in his lap, and fell backward through a window from the 14th floor of the apartment building that had been their residence for 20 years. They died as they had lived: intertwined, together. Presumably because she could not help herself, Margaret screamed on the way down. The belt had slipped noose-like around their necks.
       Love story? Tragedy? Moral offense?
       No one now remembers this story. Even when it happened, hardly anyone paid attention. It was little more than a short, puzzling obituary that appeared for one day in one small newspaper. However, there was something about the words "tragic deaths" of an "elderly couple" that intrigued me. I saw no other reference in the newspaper to a house fire or automobile accident. Who were they? How did they die? It took me months to find out.
       Mostly what I found out was that no one cared.
       The judgment of many residents in the Le Moirs' apartment building was harsh and unforgiving. Charles had once been a respected man (he served for 35 years with the Vancouver Fire Department), well-liked for his energetic charm. Whatever Margaret had once been had crumbled like her spine as she suffered from intense osteoporosis and increasing blindness. Their deaths brought disgrace "to the building" in the view of other fellow tenants. "We all felt we had been betrayed," said one. Only three people showed up at the Le Moirs' memorial service.
       Clearly, Charles and Margaret Le Moir believed that life, for them, had run its course, not right down to the last excruciating minute of a "natural" death but well beyond anything they cared to endure. Given their assessment of their condition, who could they turn to? What kind of understanding could they expect from a society in which they had long been productive citizens?
       Unlike their neighbors, I found myself compelled to go on thinking about the Le Moirs. They haunted me. The fact that their "double suicide" occurred within two weeks of my mother's death from heart failure may have added psychological resonance to their story. Death was certainly on my mind.
       Victoria, British Colum-bia, is a city of uncharacteristically balmy climate for Canada and as a result, many seniors settle there. Something like 25 percent of the population is over 65. With longer life spans and the aging of the North American population, cities with a high percentage of elderly residents will soon be more common. So too will stories like the Le Moirs', in which the will to live is outweighed by the desire to get on with death.
       For me, the Le Moirs provided the necessary spark for a life-change. I stopped doing what I had long done, profitably but uselessly, as a journalist. (I had been Maclean's film critic for five years, and won a National Newspaper Award in 1979 for arts criticism, in addition to receiving other awards for my Olympian efforts as an intellectual prostitute.) As of October, 1991, I formed The Right to Die Society of Canada. Our mission: nothing less than a change in Canada's Criminal Code to permit assisted suicide, and to legalize voluntary euthanasia under strict safeguards for those who are unable to end their own lives.
       In the interim, until the laws are changed, our task is to help individuals with a wide range of fatal illnesses -- from ALS to AIDS, cancer to multiple sclerosis --achieve "a good death" through new research into suicide methods.
       The Pope has declared that "assisting suicide" is "an absolute moral evil." The lines are being drawn for yet another divisive controversy -- this time in which the ill and the disabled become pawns of other peoples' political games.
       Something in me has long felt a sympathy with those who are disenfranchised.
       Perhaps that is why I now use my health and energy to work for others who are ill and dying. Whenever I dwelt among the smugly self-satisfied members of society as I used to do, dining high on the food chain and living in a cocoon of unconcern for others less fortunate, I never felt at home. I lived most of my life feeling this is not me. My proper place is that of the outsider, nose pressed to the windowpane on the other side of which the frivolous people party as if there were no tomorrow.

       When I first heard of the Internet, therefore, it struck a resonant chord. It sounded like a form of technology that might empower many people previously confined to the fringes. Most of our work has to do with counselling desperate people on a wide range of matters from "living wills" to helping to solve delicate family problems aggravated by terminal illness. But the part I look forward to the most is working on our Web site, DeathNET: http://
       DeathNET offers the world a place where death and dying are dealt with honestly. There are unique "how-to" publications for sale offering people who have a need the most authoritative information on how to end their lives. Most of what we offer is not sold in bookstores and is not available from any other source.
       We have also created the world's first home pages devoted to the human rights struggles of people who are terminally ill, such as Janet Good in Michigan or Austin Bastable in Windsor, Ontario. (Austin's site, known as "Please Help Me Die with Dignity" was chosen for the "24 Hours in Cyberspace" project as a unique form of Internet culture. You can find it at ~deathnet/HELP_AUSTIN.html.
       We also offer personal consultation services anywhere in North America. As one would expect, there are links to right-to-die groups in every country. Plus, extensive links to other health/medical Web sites specializing in specific illnesses, patient rights or the challenge of grief and loss. There is an award-winning obituary service known as the Garden of Remembrance. There's even a conference area known as DeathTALK where people may meet and discuss "end of life" issues and problems. More than 130,000 visits to DeathNET's home page were recorded in the first year.
       We try to present the material using the newest technologies with the help of Chris Fraser of Flying Web designs (http://www.islandnet. com/fw.html). But good Web design is more than bells and whistles. And with a service like DeathNET, the content of the site keeps people returning again, or not. We have a news bulletin service that's updated daily. This gives people more detailed versions of "right to die" stories from around the globe than they might otherwise find in their local newspaper or other media outlets. We make available the full texts of court decisions, usually within days of the rulings being handed down. We store draft legislation currently under consideration by various states.
       Included in those are the texts from two major U.S. court decisions from this year (9th Circuit Court of Appeal on March 6, and 2nd Circuit Court of Appeal on April 2) that ruled citizens in the 12 states that form the juris-dictions of these courts -- including California and New York -- have a constitutionally protected right to a physician-assisted death (under certain circumstances). This is a tremendous breakthrough. The Northern Territory of Australia has also recognized such a right (through the legislative route) and passed the world's first law outlining ways and means for terminally ill people to receive either an assisted suicide or active euthanasia.
       But in most places of the world, dying is still a miserable process for some people, made worse by the concerted opposition of medical and religious conservatives to any sort of law reform.
       With so many opposing viewpoints, but little information available on the topic, we recently opened a Student Research Center for the growing numbers of high school and university students who are doing papers or class presentations on euthanasia.
       In the research center, students can read a wide array of materials, from every point of view, and download whatever they like. Increasingly, we are obtaining the electronic publishing rights to important academic materials, from psychiatrists to bioethicists, dealing with "end of life" issues.
       Even so, with all this, we are just scratching the surface of what is possible. The greatest need of severely disabled and/or incurably ill people in North America and elsewhere is still hands-on human touch. Someone to whom even the Le Moirs could talk to openly about dying well. In that respect, we are still failing. We have trained advisors in certain areas but the need is greater than our limited budget will reach. So we limp along, still part of the disenfranchised class.

       No other period of my life has been as complex as the last five years. There are moments of satisfaction, knowing that our society is serving a role that no other right-to-die organization in the world is fulfilling, such as our original research into better methods of suicide. But the many hours of sheer frustration make it sometimes seem like the most thankless job imaginable. I do not earn a salary. I donate my time. Ever longer hours devoted to emotionally draining tasks is clearly not something that can continue to do for much longer. I long for a breakthrough that will lighten my load.
       Death is still, for the most part, the "unspeakable" in our society. Something that takes place behind a curtain drawn by healthcare professionals. The very idea that an individual can take charge of his or her own death -- and not just passively and obediently do what medical and religious authorities say they should -- is still a novel idea with most people. DeathNET has been attacked by both the religious right and conservative journalists out to make sensationalistic attacks on the "evils of the Internet." (See The Canadian Internet Handbook 1996 by Jim Carroll and Rick Broadhead for details.) But I see us as part of a growing enlightenment about an area of life that is even more weighted with taboos and irrational fears than human sexuality.
       It remains to be seen whether politicians in Canada, the United States or some other country, will try to ban the kind of information we disseminate, just as the recently passed U.S. Communications Decency Act specifically forbids transmission of information about abortion. We, too, have been subject to intense harassment by "pro-lifers."
       While I am determined not to forget the Le Moirs, neither can I afford to forget the victims of John Salvi's shooting rampage at a women's health clinic in Brookline, Mass. The more progress that "right to die" activists make, the more likely they will become victims of extremists. As the issue of "assisted suicide" becomes more urgent and pressing throughout the world during the next few years, and the opposition of moral conservatives grows more intense, it is anyone's guess as to what will happen to those who tried to light the way.

homeback to archives