Bioethics Forum Essay
Medical Aid in Dying and Organ Donation: Canada’s Autonomy Gap
In Ontario, Canada where we work and live, medical aid in dying, or MAiD, has been legal federally since 2016. Physicians can assist individuals in ending their lives if they have a “grievous and irremediable medical condition” that is causing unbearable physical or mental suffering. Bioethicists and policymakers have written widely about this process, pointing out the importance of respecting patients’ autonomy and reducing their suffering. And one of the most important aspects of the MAiD process in Canada is the respect for the patients’ wishes concerning organ donation.
MAiD patients can make decisions about organ donation without worrying that those decisions will be discounted. In contrast, people who die of all other causes do not get that degree of respect for autonomy. Their wishes are subject to the approval of loved ones and substitute decision-makers, who can choose not to donate their organs after they die. We believe that Canada is moving in the right direction with its respect for patient autonomy by allowing organ donation after MAiD, and that this respect should be granted to all patients.
The number of countries that allow MAiD is increasing, but only Belgium, the Netherlands, Spain, and Canada allow organ donation after MAiD. In Canada, whether to donate one’s organs is one of the decisions patients make in the extensive MAiD process, with thought and care going into each step. Physicians and hospitals ensure that there is informed consent, both for MAiD itself and organ donation. There are specific requirements to make sure there is no pressure or coercion. These requirements are important We as a society worry about pressure to donate, impact on a donor’s end-of-life experience and dignity, and respect for the person’s autonomy. And it is important to maintain public trust in the MAiD and organ donation processes, which we do by treating donors with respect, protecting their autonomy, and recognizing the sanctity of their life and their sacrifice. In fact, a recent study revealed that Canada has the world’s highest number of organ donors from MAiD patients.
But we should give the same respect to people who opt to be organ donors outside the MAiD process. Their organ donation decision should not be overridden by family members or other substitute decision-makers. Surrogate decision-makers can’t claim that they do not know the patient’s wishes: Ontario is one of several provinces that provides an online database for patients to record their advance directives with organ donation decisions, a huge step in the right direction. A patient’s clearly expressed and fully autonomous desire should not be subsidiary to that of a substitute decision maker and/or power of attorney.
It is not common for a family to go against a loved one’s wishes in Ontario—but it happens. Data from 2015 found that 20% of families overrode their loved one’s consent after the individual had passed away. We are left with an ethical tension: we aim to respect autonomy and minimize harm through MAiD, and yet, apart from MAiD, patients’ wishes around organ donation are not always respected. The wishes of those who die via MAiD should not receive more respect than the wishes of those who, for instance, choose to withdraw life support.
As health care clinicians, we see this discrepancy play out with patients who have kidney disease. The respect we have for our dialysis patients and their autonomy in end-of-life care is fundamental to our practice. For patients who want to withdraw from life-sustaining therapy, we help with advance care planning and allow them to make that choice with fully informed consent. However, when we discuss organ donation with someone on life support, including someone who chooses to withdraw life-sustaining treatment, we always reference the family’s involvement in the decision because we know that the patient’s decision is not final. There is a marked difference between the respect for the wishes of a patient who chooses to withdraw life support and a patient who chooses MAiD, even though both patients are essentially making the same decision—to end their lives. Patient autonomy is not being given equal consideration in these different circumstances.
We also see very sick patients waiting desperately for a kidney to become available. In practice, we cannot ignore the harsh reality that people are suffering on a daily basis while waiting for a transplant, and organs are a scarce resource. We need to be very practical and logical when trying to increase access to life- saving organs. Ensuring that we secure organs from those that want to donate is critical.
Family discussions around end-of-life care are crucial, but the choices of family members and other surrogates should not be elevated over the individual’s choice. Organ donation is a courageous and altruistic act. For those who are brave enough to come forward and decide to do it, their autonomy should be celebrated and protected.
Courtney Sas, MSW, MBE, (@CourtneySas) is a clinical social worker with Masters in Bioethics who is an adjunct lecturer at the University of Toronto Faculty of Social Work and a member of The Hastings Center’s advisory council. Michael Sklar, MD, is an assistant professor of anesthesia at the University of Toronto and practices critical care medicine.
Courtney and Michael, thank you for this thoughtful commentary on an important topic that is not always discussed or acknowledged. My one additional thought is that one of the differences in these cases is that patients who proceed with MAID have their autonomous wishes confirmed shortly prior to proceeding, often with family present/involved to hear and acknowledge them. In contrast, it is unclear to me how many people who state a desire to donate organs (e.g. on a driver’s license) discuss these preferences with their family in a meaningful way. I have also seen patients in the ICU make medical choices that reflect their families’ values, rather than their own, because of values around relational harmony etc. So, in the case where a family might end up with prolonged or complicated grief if organ donation proceeds when they wish it would not, it is plausible that a capable patient might change their mind (of course, we will usually never know because the patient is incapable at the time the decision must be made). We also know that preferences are not static, which is why an SDM’s statement regarding verbally expressed wishes can override older advanced planning documents if we are confident that the SDM is employing appropriate substituted judgement. I agree that the default should be to adhere to a patient’s prior declaration to donate, and I also think there is an argument to be made that informing families rather than asking if there are prior stated wishes may lessen the emotional burden of decision-making. However I think it is important to acknowledge the relational ethics involved in these complicated situations, particularly in multicultural settings or those where there are populations that hold significant mistrust of the medical system. In those cases, proceeding against strongly held family wishes may further damage trust within those communities.
I found this systematic review from 2022 to be interesting as well, as it discusses public attitudes towards this ethical issue: Molina-Pérez A, Delgado J, Frunza M, Morgan M, Randhawa G, de Wijdeven JR-V, et al. Should the family have a role in deceased organ donation decision-making? A systematic review of public knowledge and attitudes towards organ procurement policies in Europe. Transplantation Reviews. 2022;36(1):100673.
Thanks again for your thoughtful commentary and allowing me to contribute to the discussion.
The authors believe that Canada is moving in the right direction with its respect for patient autonomy by allowing organ donation after MAiD, and that this respect should be granted to all patients. I cannot say whether or not this is the right direction morally, as that is a metaphysical question. What is clear to me, though, and this is a sociological-historical observation, is that an organ-greedy system would be inclined to embrace a corresponding ethic – one that would strive to remove all obstacles to donation, regardless of the impact on the donor’s autonomy. Thus, for example, to increase donation from people who request Maid it would embrace the ideology of exclusive and absolute respect for their autonomy. By contrast, to increase deceased donation it would implement a fictitious opt-out system, which tramples over the autonomy of those who would have declined, but didn’t. If we really want to respect people, we should first ask ourselves what we could do for them, not what we could do for us.