Allowing so-called advance consent would lead to a meaningful loss of autonomy for patients, and undermine the safeguards that we all rely on.
***Dr. Cottle co-authored this piece with MP Garnett Genuis. Dr. Cottle is a 30 year palliative care physician and assistant professor at the University of British Columbia's Faculty of Medicine. The author's views do not represent the University of British Columbia.*** The old adage that “hard cases make bad laws” has been all but ignored in the public discussions around Canada’s euthanasia laws, and especially in the debate about their expansion. So-called “hard cases” are being used to try to justify expanding access to euthanasia without due consideration of the safety of countless others whom the laws are designed to protect. Under the current law, a person must have capacity and give consent for euthanasia at the time when it happens. Euthanasia by “advanced consent”, being pushed by New Democrats and others, would allow a person to “consent” in advance for euthanasia to happen after they lose capacity. For example, I might sign a directive to say that if I develop significant dementia I would like to be euthanized at that point, even if I am not legally capable of making a decision or giving consent at that time. My wishes might be accompanied by a qualifying condition, such as “when I can no longer recognize my loved ones”, but these conditions are necessarily subjective and the potential for abuse is extreme.
Audrey Parker has brought this issue into the news most recently. Ms. Parker had cancer, with the possibility that it would soon spread to her brain. Her own testimony suggests that her doctor was the first to suggest euthanasia as a response to her situation. Ms. Parker’s cancer was spreading and she wanted to give “advanced consent” for euthanasia, in the event that her condition deteriorated after she had lost capacity to consent. Since this is not legal, she chose euthanasia immediately. In her opinion, the law had denied her the opportunity “to live until Christmas” because she wanted to be certain that she died before potentially losing capacity to consent. Ms. Parker’s situation is very tragic, but her own words suggest that she was making decisions based on a “worst case scenario” instead of having a full understanding of all the options available to her for supportive palliative care. Choosing to die now due to fear of possible future issues is tragic indeed. Despite advocates’ assurances at the time of the Carter case that requests for euthanasia would come only from patients and never from health care workers, this was not the case for Ms. Parker and has become so for many others as well. The experience of Sheila Elson and her disabled daughter Candice Lewis in a Newfoundland hospital is a case in point. According to Ms. Elson, the doctor not only recommended assisted suicide for Candice within the daughter’s hearing and without any inquiry by Ms. Elson or her daughter, but told Ms. Elson that she was “being selfish” to refuse it.
Many fears about life-limiting illness are unfounded, and stem from witnessing a “bad death”—often years ago. End of life care has improved tremendously, and treatment options are excellent. In addition, many patients and their loved ones--who originally faced the last days with trepidation--have discovered a depth of mutual love that had not been previously expressed and have experienced rich moments of new connection precisely because they faced these times together. The argument for advanced consent ignores the reality that people may experience these moments in ways that are different from what they expect in advance.
Advanced consent is very difficult in practice. People often think that they would want something in a particular circumstance, but find themselves making very different choices once the circumstance has actually happened to them. For example, research into self-reported happiness suggests that people do much better after the onset of physical disability than they would have expected beforehand. Patients with spinal cord injuries often self-report a quality of life that is at least equal to what they enjoyed before their disability began—it just takes time to get to that point. The loss of capacity in certain cases may be scary in advance and upsetting to family and friends, but that does not mean that the person experiencing that loss of capacity is themselves experiencing pain or suffering as a result of that loss of capacity.
Beyond that, for a whole host of reasons, my past self is necessarily dramatically different from my present self, and also from my future self. In the name of autonomy, why should my past self dictate to my future self? Can you imagine being told that you have to die because some previous version of yourself, which you may no longer remember, had willed it? Can you imagine that happening in a situation where you had lost the capacity to speak, or otherwise clearly communicate your objection? This is not just a hypothetical. There is a case currently before the Dutch courts in which a patient was held down by family members while a physician injected her with lethal medication. The doctor acted based on an interpretation of an advance directive and of past statements made by the patient.
In Canada, our euthanasia law protects any medical practitioners from prosecution, even if they do not follow the legal requirements, provided that they acted in ‘good faith’. In that light, the potential dangers associated with removing the requirement for contemporaneous consent are very significant. We hope that government policy going forward will be informed by the experience of other jurisdictions, the advances in palliative care, and recognition of how the desires of a past self may differ from one’s desires in the present. Allowing so-called advance consent would lead to a meaningful loss of autonomy for patients, and undermine the safeguards that we all rely on.
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