New Mobility | November, 2002

To Choose or Not To Choose
By Paul A. Spiers

As a T6-7 paraplegic and the board chairman-elect of the Hemlock Society, I read with great interest the recent Batavia-Coleman debate on the right to assisted dying (August 2002). With more than 30,000 members, many of whom have disabilities, Hemlock is the nation's largest right-to-die organization.

Hemlock provides information about end-of-life choices and works to ensure that the wishes of our members are followed. We believe in the right of competent, terminally-ill individuals to have assistance in ending their suffering. This right is, in principle, consistent with that guaranteed by the Americans with Disabilities Act: the right of choice.

While Coleman points out that most national disability groups oppose physician-assisted dying (PAD), Batavia correctly notes that unbiased polling shows that the majority of us support properly safeguarded end-of-life choice. With whose voice, then , do our organizations speak? Not with that of their constituents, apparently.

Notwithstanding, Coleman fears a "slippery slope," leading to a time when people whose mobility is restricted or whose speech, vision or hearing is impaired, will be targeted for execution. Of course, this has not been the outcome in Oregon or elsewhere and, if anything, pain management, palliative and hospice care have all improved where PAD is legal. In all cases, safeguards ensure that requests are not solely motivated by such factors as loneliness, depression or poor self-worth that may be more prevalent among people with disabilities. As PAD is adopted by other states, safeguards must be strict, enforceable and concerned with the unique circumstances of people with disabilities. As Hemlock's chairman, I will be committed to promoting safeguards ensuring that each individual will be making his or her own informed choice.

A case in point might be that same one Coleman says "awakened the disability community to the dangers of end-of-life choice when the Hemlock Society won a landmark 'right to die' case by exploiting the situational despair of Elizabeth Bouvia, 26, a CP quad." Bouvia was represented by the ACLU, not Hemlock, and the outcome confirmed a patient's right to control and to choose to refuse medical treatment. After her legal victory, however, Bouvia chose life and she sets the record straight in a recently conducted interview that appears in the current issue of Hemlock's End Of Life Choices in which she states that, "Refusing food and hydration was not a temporary impulse caused by life events, as has been implied. Contrary to what was said about me, I fully understood the consequences of my actions." I would recommend Bouvia's own account rather than Coleman's, as Bouvia herself asserts that she has never spoken to anyone at Not Dead Yet about her case.

In another case considered an example of abuse in Oregon, Coleman states that no one valued Kate Cheney's life: "Cheney's 'choices' were the following: be a burden on family, go to a nursing home or commit suicide." Coleman notably left out one choice: to die a slow death until such time as Cheney became amnesic, with no understanding of her own identity or even that the person visiting her was her daughter.

Despite his support of the right to assisted dying, Batavia has been highly critical of Hemlock's rhetoric concerning people with disabilities. I cannot deny that Hemlock has sometimes been insensitive to the concerns of the disability community. I can only apologize for the past and reassure all that, to the best of my knowledge, any perceived or apparent slight was not reflective of the organization's policies. For now, I can only ask for patience and understanding from readers and from such organizations as AUTONOMY, both for myself and for Hemlock, as I seek to ensure that Hemlock is always sensitive to the concerns of the disability community. The best evidence I can offer that Hemlock wishes to be sensitive to our concerns is that it has chosen me as its next chairman.

Just as the ADA has provided me with choices that did not exist 12 years ago, PAD can provide choices to people in the final stage of terminal illness. When this becomes a right in more states, as it nearly did in Hawaii this year, Coleman's choice can be to await her death by natural causes. However, it will be my right and that of others who so choose, to find a peaceful death in consultation with our loved ones and, I hope, with the assistance of a physician.

Paul Spiers, Ph.D., teaches at the Boston University School of Medicine and supervises research at MIT. He will become chairman of the Hemlock Society in July 2003.