The last time that Sue Rodriguez drove her car, it was to travel 25 km to a meeting with a counsellor from the Right to Die Society of Canada. That was in August, 1992, and the illness that is killing her made driving difficult. One year earlier, doctors had diagnosed Rodriguez as having amyotrophic lateral sclerosis (ALS), a progressive neurological disease for which there is no known treatment or cure. (The
disease is also known as Lou Gehrig’s disease, after the baseball player who died of ALS in 1941.) As she battles the debilitating effects of ALS, Rodriguez, 42, says that she is also fighting for the right to end her own life. “I don’t have any fear of dying if it’s done peacefully,” Rodriguez told Maclean ’s last week. “I’m going to die anyway. I prefer to have control over it myself.” Aided by John Hofsess, executive director of the Vancouver-based Right to Die Society, and a lawyer, Christopher Considine, Rodriguez initially is asking the British Columbia government for assurance that a physician who helped Rodriguez to die would not be prosecuted. If that request, which was sent to the ministry of the attorney general late last week, is rejected, Considine says that she will ask the B.C. Supreme Court to consider the validity of the section of the Criminal Code that makes physician-assisted suicide illegal. If all else fails, Hofsess says that he has signed a contract saying that he will help Rodriguez to end her
life. Despite a maximum penalty of 14 years in prison for such an action, Hofsess says that he has no reservations. “I would rather be guilty of breaking a bad law and helping a friend,” he says, “than of upholding a bad law and betraying a friend.”
When she first started to lose control of her hands in April, 1991, Rodriguez was working as a secretary in a Victoria real estate office. Initially, Rodriguez says that she thought that
her problem might be caused by carpal tunnel syndrome, a type of wrist injury that may be caused by the repetitive stress involved in typing. Four months later, a Vancouver neurologist positively diagnosed her as having ALS, a disease that affects about 3,200 Canadians. According to Joanne Brown, the national executive director of the Toronto-based ALS Society of Canada, the average length of time from diagnosis to death is 2xh years. The devastating disease, she adds, “will start in one part of the body and you literally become buried inside of your own body as each function stops.” Within 15 months of the first symptoms, Rodriguez, who is married and the mother of an eight-year-old son, had lost almost all strength in both her hands and nearly all the strength in her legs. More recently, she began to experience problems swallowing. She also has some difficulty in breathing. She says that she gradually came to the decision to end her own life. “I didn’t want to think too much about the end,”
she adds. Ultimately, however, she became aware of the different ways people with ALS may die, including asphyxiation. Said Rodriguez: “I just didn’t want to be in a situation where I wouldn’t be able to receive help.”
Finding the kind of help that Rodriguez wants has not been easy. The doctors she approached turned down her request to assist her in committing suicide. Rodriguez says that she read the 1991 book on suicide, Final Exit, by British-born Derek Humphry, the founder of the Eugene, Ore.-based National Hemlock Society, which outlines ways in which terminally ill people can end their own lives. But Rodriguez says that she concluded that by the time she was ready to end her life, she would be physically incapable of doing it herself. Then she decided to approach Hofsess’ Right to Die Society. Hofsess, a former journalist who founded the society a year ago, says that by the time he met Rodriguez at his office, “her story was that T’ve turned to doctors, I’ve turned to health-care workers, I’ve approached a minister. And all I have ever met with is evasion or indifference or hypocrisy.’ ”
If the case goes to the B.C. Supreme Court, Considine says that he plans to attack the existing law on assisted suicide by using three sections of the 1982 Canadian Charter of Rights and Freedoms. Section 7 includes the right to life. Considine contends that the right to life includes the right to a dignified death. Section 12 says that there should be no cruel or unusual treatment or punishment. Said Considine: “I think it becomes cruel and unusual for Sue Rodriguez to have to endure the type of death that ALS causes.” Finally, Considine says that he would argue that Section 15, which says that there will be no discrimination against disabled Canadians, is discriminatory. The reason: Rodriguez is too incapacitated to commit suicide herself, and suicide is not an offence under the Criminal Code.
If Rodriguez loses in court, Hofsess says that there are contingency plans. Because Rodriguez does not want her death to put Hofsess at risk, they say that they have looked at other jurisdictions with different laws on assisted suicide. Hofsess says that Dr. Jack Kevorkian, a Michigan physician who used carbon monoxide gas and lethal drugs to help two chronically ill women die in 1991, has offered to help Rodriguez. “The next line of options are those that would legally protect me,” said Hofsess. “However, we also allow that circumstances may preclude being able to use those options. Then we’re left doing it here, maybe in her own home.”
Despite her rapidly deteriorating condition, Rodriguez says that she is not ready to die yet and that she continues to enjoy her life. Much of her pleasure, she adds, comes from being with her son. Rodriguez has told him about her plans and, she says, “he’s doing fine, but there are times when he acts concerned and a little frightened.” When the time comes to die, Rodriguez says that she will not be afraid—if the decision is hers to make.
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