Research identifies key concerns with expanding access to MAID by advance requests
In early December, the Council of Canadian Academies (CCA) will report to Parliament on whether to expand access to medical assistance in dying (MAID) in three major areas: to mature minors, to those with mental illness as the sole underlying medical condition, and by advance directive.
The CCA reports will not make recommendations, but the reports will include available evidence on expanded access to MAID in these three areas and consider how the evidence informs our understanding of MAID in the Canadian context.
The EFC submitted a brief which outlines academic research and opinion that expressed key concerns about expanding MAID in these ways.
Here is an excerpt from the backgrounder to the EFC’s brief, which summarizes some of the reasons not to expand access to MAID by advance request. This excerpt is written in the more formal style required of these kinds of briefs, but we thought it was important to share this information as widely as possible. We are always available to answer your questions.
The Evangelical Fellowship of Canada (EFC) is the national association of evangelical Christians in Canada. The EFC upholds respect for human life and care of vulnerable persons. Expanding access to euthanasia and assisted suicide (EAS) would place the most vulnerable Canadians at risk and further undermine societal respect for life.
Guidelines and requirements for carrying out EAS can lack clarity, even in cases not involving mental illness, mature minors and advance directives. (For example, in the Netherlands in 2010, 23% of EAS cases were not reported by physicians because they did not consider their actions to fall under the EAS guidelines[2]). The potentially more complicated cases which are the subject of this study involve some of the most vulnerable Canadians, providing a greater potential for abuse, and would be more difficult to govern.
Advance requests
The requirement that a patient be competent at the time of MAID is a critical safeguard against abuse and involuntary euthanasia. The EFC opposes allowing the use of advance directives to request MAID.
Advance directives are very complex and difficult to carry out because of the nuances and specifics of complicated medical conditions and interventions.
The person writing the advance request cannot anticipate the details of their future state and their future desires. As one study notes, a person diagnosed with dementia “does not have full knowledge to make decisions about subsequent events.”
As Dr. Blackmer of the Canadian Medical Association stated to the Special Joint Committee on Physician-Assisted Dying in reference to advance directives:
What I can tell you is that in real-life practice, putting advance directives into action is incredibly complex and difficult, because it's very hard to capture all of the nuances and the specifics of a very complicated medical condition and intervention. Even in the best of situations, physicians have a lot of difficulty actualizing an advance directive.[24]
Predictions about future suffering are speculative. As a study on dementia and euthanasia noted: “Dementia affects each individual differently, in part due to the area and magnitude of the damage to the brain, but also because of the uniqueness of each individual. Some sufferers of dementia may retain their personality while others may experience dramatic personality changes; there is simply no way to know how the disease will affect a person or how the person will feel about their quality of life once the disease has set in.”[25]
Advance requests put significant additional responsibility on the physician, who must decide at what point a patient’s life will end. Currently the doctor carries out the request of the patient. With advance directives, the doctor must identify the particular time at which the patient would want to die. It is an interpretive role but also a progression in role. The doctor goes beyond carrying out the patient’s request to interpreting the request, possibly in the midst of unforeseen circumstances and complications, and deciding on the timing.
According to a study from the Netherlands, “In case of advanced dementia, many physicians point out that it is impossible to determine whether a patient is suffering unbearably, due to a lack of meaningful communication.”[26] The same study notes that many Dutch elderly care physicians “state it is impossible to determine at what moment an advance euthanasia directive is to be carried out if the patient can no longer specify this. Also, it is probable that physicians cannot conceive of performing euthanasia in a patient with dementia who might not fully comprehend what is happening.”[27] In such instances, decisions are not based on the individual’s autonomous decision in the moment, but on the determination of others.
People change their minds. As one study noted, half of the terminally ill patients who had seriously considered euthanasia or assisted suicide for themselves changed their minds after a few months. Patients with depressive symptoms were more likely to change their minds about desiring EAS.[28]
Conclusion
The EFC opposes all euthanasia and assisted suicide. However, in a context in which these practices are legal, we advocate for stringent safeguards to provide the strongest possible protection for vulnerable Canadians and to minimize the potential for abuse.
This brief summary points to compelling evidence of numerous problems with expanding access to MAID to mature minors, to those with mental illness as the sole underlying factor, and by advance requests. To expand access to MAID in these ways would place some of the most vulnerable Canadians at unacceptable risk.
Our focus as Canadians must be on extending and improving high quality palliative care and treatment for mental illness.
(See the EFC’s submission to the CCA and the full backgrounder to the EFC’s submission.)
Endnotes
[2] Onwuteaka-Philipsen et al., “Trends in End-of-Life Practices before and after the Enactment of the Euthanasia Law in the Netherlands from 1990 to 2010,” 908, 913.
[25] Franklin, “Physician-Assisted Death, Dementia, and Euthanasia,” 568. Franklin, Katie. “Physician-Assisted Death, Dementia, and Euthanasia: Using an Advanced Directive to Facilitate the Desires of Those with Impending Memory Loss.” Idaho Law Review 51 (2015 2014): 547–73.
[26] Bolt et al., “Can Physicians Conceive of Performing Euthanasia in Case of Psychiatric Disease, Dementia or Being Tired of Living?,” 596. [Bolt, Eva Elizabeth, Marianne C. Snijdewind, Dick L. Willems, Agnes van der Heide, and Bregje D. Onwuteaka-Philipsen. “Can Physicians Conceive of Performing Euthanasia in Case of Psychiatric Disease, Dementia or Being Tired of Living?” Journal of Medical Ethics 41, no. 8 (January 30, 2015): 592–98. http://doi.org/10.1136/medethics-2014-102150.]
[27] Ibid., 596.
[28] Emanuel, Ezekiel J., Diane L. Fairclough, and Linda L. Emanuel. “Attitudes and Desires Related to Euthanasia and Physician-Assisted Suicide Among Terminally Ill Patients and Their Caregivers.” JAMA 284, no. 19 (November 15, 2000): 2460–68. http://doi.org/10.1001/jama.284.19.2460.