Letter to the Editor: Re: Locked in Patients Humanity for the Trapped (25 November 2009)

30 November 2009

The Globe and Mail

Misdiagnosis of “locked-in” patients as being in a vegetative state is one reason why doctors should not have exclusive control over end of life decision making: Like all human endeavors, the practice of medicine is affected by limitations in knowledge and cultural understanding of human behavior. Nevertheless a Manitoba College of Physicians and Surgeons Statement has given Manitoba’s doctors the authority to decide when to withhold and withdraw life sustaining treatment, regardless of the views of the patient and/or his/her family. Decisions about the ending of life have as much, if not more, to do with personal and cultural values, than questions of medicine. The involvement of the dying person and/or his family in end of life decision-making serves to ensure that these difficult decisions are in keeping with the individual’s values. Additionally, the involvement of loved ones counterbalances negative stereotypes about the patient which may serve to hasten decision-making in favor of the ending of life. Many of us in the disability community have heard the comment: I would rather be dead than live like you. We know that this cultural attitude comes into play during decision making at end of life. Thus, many of us with disabilities want people who know and care about us, first and foremost for our humanity, involved in the decision making that will occur at our end of life stage.


Laurie Beachell
National Coordinator