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.