Response to ‘Better dead than disabled, I don’t think so’
The following is a letter UM Today received in response to an article we ran on Feb. 13.
In response to Dr. Hansen’s article “Better dead than disabled, I don’t think so!” published in UM Today on February 13, 2015:
Dr. Hansen began her article by quoting Dr. Walker on CBC Information Radio, who reportedly said that “the disabled should be grateful for the recent Supreme Court decision.” Dr. Hansen took umbrage with this opinion and felt it was “cavalier” and “dismissive.” I am not a member of the disability community but as co-coordinator of the Winnipeg chapter of Dying with Dignity Canada I take the concerns of the community seriously and feel the need to respond. My interpretation of Dr. Walker’s comment comes from the words of the Hon. Steven Fletcher, MP from Winnipeg and author of a proposed private member’s bill on assisted death; Mr. Fletcher lauds the SCC’s decision as a member of the disability community because it means he’s no longer discriminated against should the time come that he feels he is suffering unbearably and wishes to die on his own terms. Before the SCC’s decision, that ability was the sole province of people who are physically able to prepare for and commit a life-ending act without assistance, rendering people without that ability second-class citizens. Mr. Fletcher’s opinion is shared by the Winnipeg chapter’s newest volunteer, Sherry Lyn Marginet, who is also a member of the disability community, as well as the Disability Advisory Council of Dying With Dignity Canada and, according to a recent Ipsos Reid Poll, 85% of people with disabilities (with a sample credibility interval of 11%, 19 times out of 20).
Dr. Hansen goes on to explain the “lived experience of disability and impairment,” an explanation that helps us understand why some persons with disabilities might feel pressured to die before nature intends. I hope that thought is as abhorrent to all able-bodied people as it is to those whose experience is one of devaluing, and that it motivates us to draft legislation with sufficient protections in place to quash this suggestion. I know from the experience in Quebec that seeing the safeguards in proposed legislation was sufficient to secure the endorsement of disability community organizations in that province.
There are two main considerations in physician-assisted death that we as a nation must define going forward: eligibility and remedy. Below I address issues of eligibility.
According to the SCC’s ruling, to be eligible for physician-assisted death (PAD), an applicant must be (1) an adult who is (2) of competent mind, and he or she must (3) clearly consent to life-ending treatment. In addition, the person must have (4) a “grievous and irremediable medical condition (including an illness, disease, or disability) that causes (5) enduring suffering that is intolerable to the person in the circumstances of his or her condition.” However, people need not be terminally ill to be eligible for treatment.
Dr. Hansen’s concerns appear to relate to item (3), clear consent. If a person with a disability or impairment is “often perceived as taking up space” (quoting Dr. Hansen) and already feels marginalized and devalued then it’s easy to make the mental leap that such a person might feel encouraged to claim consent, assuming all other conditions of the requirements are also present and confirmed. Clearly a person who feels they are “taking up space” to the point that they would want to request assistance to die is suffering from impaired decision making.
Dr. Arthur Schafer’s article in the International Journal of Law and Psychiatry says the following on page 527, under the section “Safeguards”:
Several psychiatrists and palliative care specialists who gave expert testimony in Lee Carter deposed that, not only from their personal experience (with patients who requested PAS, both in Oregon and elsewhere), but also based upon the available scientific evidence, it is possible accurately to screen patients who request PAS in order to ensure that (a) they possess decision-making capacity, (b) are not depressed in a way that would compromise their ability to give informed consent and (c) have not been subjected to undue influence by family or caregivers:
“[T]he vast majority of persons who pursue PAS do so with single minded determination, at times in opposition to the views of family members …. These are very independent people who do not want more care.” [Plaintiff’s opinion evidence, testimony of Dr. Linda Ganzini, Lee Carter, 2012, para 37.]
A person with a disability who does feel their life has value would not be eligible for (or at risk from) an unwanted assisted death as the Supreme Court decision makes clear that the person can only choose assistance to die for themselves.
Canada and the provinces already have laws and regulations on the books that govern a competent adult’s right to refuse life-saving or life-prolonging medical treatment (sometimes referred to as WWLS: withholding or withdrawing life-sustaining treatment). If no federal or provincial legislation is passed regarding PAD then existing laws that govern end of life care, such as those in place for WWLS, will govern PAD as well. Since there have been no alarming reports or statistics that claim that people from the disability community are being disproportionately or inappropriately pressured to demand WWLS, then on what basis would we assume they would be with PAD?
Opponents of assisted death argue that mistakes are inevitable, and through human error it’s conceivable that some may be assisted to die who shouldn’t have, and on this basis they wish to restrict the rights of all Canadians to be autonomous in our end of life decisions. Real people are suffering unbearably and deserve more consideration than philosophical victims of potential abuse. We already deal with end of life situations every day. How is this different than someone choosing to refuse a life-saving blood transfusion or stop life-sustaining kidney dialysis?
I hear Dr. Hansen’s concerns, and I appreciate her explanation from the point of view of people who feel vulnerable to abuse of the system. In response I say let’s amplify those voices and ensure they’re heard as we propose protections and safeguards in any federal or provincial PAD legislation. “Better dead than disabled?” I don’t think so either!
Dying with Dignity, Winnipeg chapter co-coordinator
Many thanks to Ms. Frazer for clarifying some points in Dr. Hansen’s article. Whether or not persons have disabilities, under the new law they will not be eligible for medical assistance in dying unless they are clearly competent to choose this form of end-of-life care for themselves. Moreover, as Ms. Frazer says, “Since there have been no alarming reports or statistics that claim that people from the disability community are being disproportionately or inappropriately pressured to demand WWLS, then on what basis would we assume they would be with PAD?”