This is a belated but timeless post of Amy Hasbrouck’s powerful open letter to the Canadian Medical Association (CMA). Amy is Director of NDY’s sister organization, Toujours Vivant/Not Dead Yet Canada. She issued the letter in August 2014 in response to the CMA’s report entitled “End of Life Care: A National Dialogue.”
Her message calling for “strong rejection of medical aid in dying and other ending-of-life practices due to their discriminatory impact on people with disabilities” (emphasis added for clarity) is equally applicable to U.S. doctors. A poorly worded physician poll that didn’t actually refer to “assisted suicide” was reported in Medscape to indicate that 54% of doctors say that physician assisted suicide should be allowed. Fortunately, the American Medical Association policy and the National Hospice and Palliative Care Organization resolution continue to oppose legalization of assisted suicide, but perhaps U.S. doctors would still benefit from getting letters like this.
15 August, 2014
An open letter to the Canadian Medical Association
I am writing on behalf of Toujours Vivant-Not Dead Yet to members of the Canadian Medical Association to encourage you to communicate a clear and strong rejection of medical aid in dying and other ending-of-life practices due to their discriminatory impact on people with disabilities.
Toujours Vivant-Not Dead Yet is a project of the Council of Canadians with Disabilities Ending of Life Ethics Committee to unify, inform and give voice to the disability opposition to assisted suicide, euthanasia and other ending-of-life practices.
As noted in the report “End of Life Care: A National Dialogue” the CMA’s current policy states that “Canadian physicians should not participate in euthanasia or assisted suicide,” and that to permit this, a “fundamental reconsideration of traditional medical ethics would be required.” This is a laudable statement.
However the last paragraph of the report offers a very different message, when it speaks of “a general acknowledgement that society would make the final decision concerning euthanasia and physician-assisted dying and that it was not the role of the CMA or the medical profession to dictate what this should be, as a reflection of patient-centred care.” This kind of equivocal language is troubling to the vast majority of disability rights activists, who have vocally opposed assisted suicide and euthanasia for more than 30 years.
Nearly every person affected by life-ending medical intervention has a disability, whether or not that person also has a terminal illness. For that reason, this issue is of vital concern to disability rights advocates. Unfortunately the CMA report fails to factor in many barriers faced by people with disabilities in obtaining high-quality medical care. These barriers often have the effect of pushing us toward euthanasia and assisted suicide.
First is the unconsidered practice of equating disability with the end of life. For example, many people with ALS can and do extend their lives by choosing to use a ventilator and/or tube feeding. Similarly, with proper management HIV/AIDS has become a chronic disease rather than a death sentence. Yet people with these and other disabilities are usually considered eligible for euthanasia and assisted suicide.
As well, people with disabilities may face medical complications that can be life-threatening without proper management. These crises can propel someone into the category of eligibility for euthanasia or assisted suicide within a matter of hours. Finally, both the Québec statute and Steven Fletcher’s proposed bill would include people with disabilities; Québec’s undefined “end-of-life” provision is an enormous loophole, and Fletcher’s bill has no requirement that the person have a terminal illness.
People with disabilities face substantial barriers to health care, causing adverse effects on health outcomes and making them vulnerable to pressure to accept euthanasia or assisted suicide. Architectural barriers and lack of accessible equipment in doctors’ offices and hospitals mean that people with disabilities do not get examinations and diagnostic tests (such as mammograms). The lack of expertise in the natural course and typical complications associated with a disability can cause misdiagnosis or improper treatment. Systemic factors that act as disincentives or obstacles to access, such as insufficient time to communicate effectively with or assist people with disabilities, also diminish health and quality of life.
Another problem not addressed in the CMA report is the attitudes of health care professionals about disability. Dr. Carol Gill and others have demonstrated that medical staff routinely rate people with disabilities’ quality of life as lower than do the people themselves. This may be due in part to the fact that when someone seeks medical attention, they are typically in pain or difficulty. As well, physicians are not immune from the widely-held belief that life with a physical or cognitive disability is a fate worse than death; an opinion expressed throughout the report. Secondly, where doctors have as their goal to cure their patients, a person with a disability appears to embody the inability of medical science to “cure” people. Finally, where health care professionals only see patients in the medical setting, they may be unaware of the person’s accomplishments, contributions and competencies.
Another issue not covered in the CMA report is the tendency of advance directives and medical orders for life sustaining treatment to favour refusal of treatment over acceptance. The refusal option is nearly always offered first. Use of ventilators and feeding tubes is typically described in negative terms, rather than the life-saving options they are.
The role of the physician includes that of patient advocate, both individually and collectively. While many doctors are excellent advocates on behalf of their patients, medical associations must also take action to improve access to quality health care services, acknowledge the value of all people under their care, and protect those who are harmed by discrimination and barriers. The World Medical Association, the World Health Organization, the American Medical Association and the British Medical Association have all taken clear positions against assisted suicide and euthanasia.
The Canadian Medical Association has a crucial role in the national debate. Anything short of a strong statement against ending-of-life practices would be seen as succumbing to pressure rather than establishing a considered and conscientious policy.
Thank you in advance for your attention.
Amy E. Hasbrouck
Director