In August of this year Judge Lynn Smith of the Supreme Court of British Columbia ruled that Gloria Taylor, a 64-year-old woman diagnosed with amyotrophic lateral sclerosis had the ‘right’ to avoid the suffering, pain and ‘indignity’ of dying from this debilitating disease. The judge charged the Canadian government with changing its rules to allow physicians to prescribe without fear of legal redress medications that can be used to end one’s life (similar to Oregon’s Death with Dignity Law). Gloria Taylor was granted this right as a personal exemption to the existing laws, but before exercising the exemption she died of a colon infection Oct. 5th. The decision has been appealed to the BC Court of Appeals, but almost certainly the Supreme Court of Canada will have to rule again even though a 5 to 4 court decision in the Sue Rodriquez case of 1995 held that there was no ‘right’ to assisted suicide nor would the prohibition be a violation of patients’ rights.
The Sunday, October 21, front page of the Toronto Star highlighted the story of Elizabeth MacDonald who had gone to the Dignitas Clinic in Zurich, Switzerland in order to ‘commit suicide under medical supervision’ (Dignitas lacks the limiting criteria envisioned for Canada). She had been diagnosed with progressive multiple sclerosis and sought suicide as she did not want MS to dictate her death. A comment from her husband, Eric, struck me: “If she’d known from the early days that (a planned death) would have been an option for her in Canada, I think she would have lived three or four years longer than she did. We were robbed of those years” (p. A6). I wonder, is Canadian society responsible for ‘stealing’ years of life from them?
Telling personal stories is often a path for both humanizing otherwise philosophical, legal and ethical arguments and adding a certain weight or heft to a moral stance. PAS out of compassion becomes PAS for Gloria or Elizabeth. Arguments that summarize situations in quantifiable terms become added time of suffering or, for Elizabeth, added years at home.
An enormous question for ethics, then, is who is choosing the stories? Why are there so few stories of palliative or hospice care that change people’s minds about PAS or demonstrate the beauty of living even in the face of terminal illness?
Consider the disturbing article by William J. Peace, “Comfort Care as Denial of Personhood,” Hastings Center Report, 42.4 (2012). Peace describes a life-threatening illness that took him—already in a wheelchair—to the ICU of a major hospital. The story unmasks how physicians can use the ‘treatment as too burdensome’ argument to try and convince patients or their families that it is time to give up—not to worry, the doctors would keep the patient comfortable while dying. Fine—except that Peace wanted desperately to live and to have all treatment that would help him live. He felt enormous pressure. What Mr. Peace points out is that under the radar, often, is the intention of the caregivers to pre-judge quality of life and to decide what is best for their patients.
Peace and I too ask: “Why is it we rally around people with a disability who want to die? Society embraces their dignity and autonomy. They are applauded. These people have character! These people are brave! This is an old story, a deeply engrained stereotype that is not questioned. We admire people with a disability who want to die, and we shake our collective heads in confusion at those who want to live” (p. 16). Why? I suggest that physician pressure to end a life that the physician cannot imagine anyone wanting is a hidden part of this agenda.
I suspect many physicians think for varied reasons that ending the lives of patients is a good thing. Further, medical paternalism continues as patient autonomy is often a disguised form of ‘agreeing with the physician.’ And, finally, the media likes heroes whose lives are then presented as a moral argument; but the criteria for choosing heroes generally reveals a moral stance, not an argument.