When her baby finger began to involuntarily jerk away from her ring finger, Sue Rodriguez was unaware that these small muscle spasms were the first sign that she had a killer disease.

On August 22, 1991 Rodriguez was diagnosed with amyotrophic lateral sclerosis (ALS), also named “Lou Gehrig’s disease” after the Yankees’ baseball player who gave a human face to the illness. ALS is a progressive neurodegenerative disease. It attacks nerve cells in the brain and spinal cord, resulting in muscle weakness and, eventually, muscle atrophy. Patients with late-stage ALS may become totally paralyzed.

Rodriguez was 41 years old when she was diagnosed with ALS. Given three to five years to live, she explored the bleak options available to her: allowing the disease to take its course, entering palliative care, or committing suicide. Her decision to commit suicide was complicated by the fact that ALS would eventually rob her of the physical ability to take her life. She would require help.

Fight of Her Life

Rodriguez approached lawyer Chris Considine of Victoria, BC, for legal advice. He remembers her as “a very intelligent, articulate woman.” She understood what she faced–muscle weakness, twitching, and cramping, joint dislocation, difficulty in speaking, swallowing, and breathing, and possible paralysis–all while her brain continued to function.

Considine was familiar with the ravages of ALS. He watched his grandmother succumb to the disease that “locked a living, cognizant human being in a body [that] ceased to function. I remember the tragedy in my grandmother’s eyes when I went to see her, so I knew what Sue faced–and I knew she [was the mother of] a small boy.”

Considine’s compassion as a father also propelled him to take on Rodriguez’s case essentially for free (in legal terms, pro bono). “Sue’s horror as a mother was that her eight-year-old son would see her in the final horrible stages of the disease,”he says, “and that would be how her son would remember her for the rest of his life.”

Rodriguez could have legally committed suicide, an activity that was decriminalized by the Trudeau government in 1974. But Rodriguez wished to end her life at a time of her choosing, before ALS had taken away her ability to hug her son. By that time, she would require assistance to commit suicide. Considine took Rodriguez’s legal battle all the way to the Supreme Court of Canada where she lost in a 5-4 decision.

Preservation of Life

The Supreme Court’s ruling sought to preserve the sanctity of life. Those opposed to assisted suicide used the “slippery slope” argument–the belief that if the law against assisted suicide was struck down, the vulnerable, such as the disabled, could be murdered.

Considine’s legal argument on behalf of Rodriguez proposed a series of safeguards that would have to be met before doctor-assisted suicide could be approved by a court of law. These safeguards include the following stipulations: a patient must be certified by two doctors to be terminally ill; a patient must have all medical options explained to him or her; the coroner’s office must be notified; and the patient must activate the suicide device by him or herself.

Considine believes the slippery slope argument was used inappropriately in Rodriguez’s case. He cites the conviction of Robert Latimer for the death of his disabled daughter as proof that Canada’s laws do protect the vulnerable. While some people claim Latimer’s murder of his daughter Tracy was merciful homicide, Considine disagrees. Unlike Rodriguez, Tracy Latimer was unable to express a wish to die, and her life was ended without her consent.

Death With Dignity

Professor Arthur Schafer, director of the Centre for Professional and Applied Ethics at the University of Manitoba, states that fear of the slippery slope argument has already been disproved in Oregon. In 1997 Oregon enacted the Death with Dignity Act, which allows terminally ill patients to end their lives by taking a lethal medication expressly prescribed by a physician for that purpose. The safeguards that Oregon has adopted clearly resemble the recommendations Considine made in the Rodriguez case. Schafer notes that “pain management and comfort care have, if anything, improved in Oregon.”

Justice Hollinrake wrote in the Rodriguez v. British Columbia (Attorney General) court of appeal decision of the “fine line between physician-assisted suicide and palliative care from the viewpoint of medicine.” In 1970 when Schafer began teaching medical ethics to law students at the University of Manitoba, the issue of indirect euthanasia was controversial. Thirty years ago, administering large doses of painkillers such as morphine to alleviate terminally ill patients’ pain was considered unethical, as the practice was believed to hasten death.

“Today,” Schafer points out, “indirect euthanasia has been renamed–now it’s called appropriate medical care.” Schafer says the term is not used much anymore because we no longer consider it euthanasia when a patient expresses the wish to withhold or withdraw medical treatment.

But both Schafer and Considine agree that, whether or not our government legalizes assisted suicide, it’s happening in Canada. Schafer says, “It’s happening in the dark, without safeguards.”

Choice and Control

Rodriguez’s courageous fight to control the manner and timing of her death lifted the taboo on the subject of how Canadians die. She increased Canadians’ awareness of end-of-life options, including palliative care. Considine believes the Rodriguez case presented “a novel concept–physician-assisted suicide–to Canadian society.”

Rodriguez will always be remembered for asking, “Whose body is this? Who owns my life?” When confronted with a terminal illness, some of us will ask the same questions. Should we choose palliative care? Should we choose alternative medical treatment? Should we request the withholding or withdrawing of life-saving measures? Should we choose suicide?

Considine says, “It’s about choice and it’s about control, and if it’s not harming anyone else, then as a society, we should be prepared to consider assisted suicide.”

Ellen Niemer dedicates this article to her dad, who chose to let cancer take its course, and to her friend Jarrod, who chose palliative care.

Source: alive #307, May 2008