The guidelines on how to handle organ donation after medically-assisted death have been officially updated for the first time since a "reasonably foreseeable natural death" was removed from the eligibility criteria.
In 2019, Canadian Blood Services (CBS) developed a set of policy guidelines for organ and tissue donation surrounding patients undergoing medical assistance in dying (MAID), so that clinicians, organ donation organizations and palliative care experts would be able to walk patients through the process and their options for organ donation with sensitivity and care.
But these recommendations haven’t been updated since Bill C-7 removed the criteria of a foreseeable natural death in 2021 — until now.
CBS posted a set of updated and new recommendations in the Canadian Medical Association Journal on Monday.
"The purpose of this updated guidance is to continue to inform the development of policies and practices of donation after MAiD," authors wrote. "This will help clinicians navigate the medical, legal and ethical challenges that arise when they support patients pursuing donation after MAiD.”
The recommendations — which were developed on behalf of CBS with the help of the Canadian Society of Transplantation, the Canadian Association of Critical Care Nurses, the Canadian Donation and Transplantation Research Program and the Canadian Association of MAiD Assessors and Providers — includes two updated recommendations and eight new recommendations to add onto the 2019 guidelines, which are still largely applicable.
The updated and new recommendations centre around how to refer patients to organ donation organizations, how to receive informed consent, and education for physicians involved in organ donation and working with MAID applicants.
A group of 63 experts reviewed the legislative changes and held three meetings from June 2021 to April 2022 to create the recommendations. These meetings also included input from two patients who had requested and been found eligible for MAID, as well as two family members of patients who had previously donated organs after MAID.
Bill C-7 established safeguards for two types of patients: Track 1 patients, who do have a natural death that is reasonably foreseeable (i.e., a person with terminal cancer), and Track 2 patients, those who do not have a foreseeable natural death but fit other criteria. Track 2 patients have additional safeguards, including a minimum 90-day assessment period.
The new guidance doesn’t touch on the ethics of MAID or any of the controversy surrounding expanding MAID — it only seeks to address the topic of organ donation for those who have been found eligible for MAID in Canada.
A report recently found that Canada is performing the most organ transplants from MAID receipients out of the four countries that offer this practice. According to the Canadian Institute for Health Information, transplants using organs donated by patients who received MAID accounted for six per cent of all transplants from deceased donors in Canada in 2021.
The majority of guidelines from 2019 are still applicable, according to the new recommendations. However, some updates and some new recommendations are now being put forward.
The new guidelines include two updated ones, both of which pertain to consent for Track 1 patients.
In situations where a Track 1 patient has provided first-person consent for MAID that includes first-person consent to organ donating, but lose their capacity to reaffirm their consent by signing the final waiver — such as in cases where illness might cause a steep deterioration in their mental faculties — their initial consent will be upheld and donation can be facilitated.
First-person consent refers to when a person consents to organ donation in a legally binding manner — essentially, a living will.
Additionally, when Track 1 patients have provided consent for MAID, but lose their capacity before they have the opportunity to give first-person consent to organ donation, that patient’s designated substitute decision maker should be talked to in order to ascertain if the patient was already a registered organ donor or discuss if it is consistent with the patient’s wishes.
The new guidelines include eight new recommendations.
Track 1 patients
If a patient has been cleared to receive MAID prior to them losing their mental capacity, admissions to the hospital for the purpose of retrieving organs for organ donation should be coordinated with the patients’ substitute decision maker.
Track 2 patients
Once a Track 2 patient’s eligibility for MAID is confirmed, they should be approached for first-person consent for organ donation regardless of when their eligibility for MAID was confirmed.
Unlike Track 1 patients, Track 2 patients already are required to provide final first-person consent directly before receiving MAID, due to them not having a foreseeable natural death. The new recommendations add that first-person consent needs to be obtained before transfer and admission to the hospital for organ donation for Track 2 patients as well.
Another recommendation suggests that if patients want to receive MAID at home, but also want to donate their organs — which usually requires a hospital — patient requests for organ donation to be carried out at home should be considered on a case-by-case basis.
“Further work is necessary to assess the potential for a medical, ethical and legal framework for donation after MAiD at home in the Canadian context,” authors wrote.
Track 2 patients should be referred to the provincial organ donation organization if they ask about organ donation, regardless of whether this discussion occurs within or after the minimum 90 day assessment period.
Organ donation organizations and health care professionals
The recommendations emphasized the importance of education, including a specific recommendation that health care professionals who are involved in organ donation after MAID should receive specialized training and support for these roles.
All organ donation organizations and transplantation programs should develop their own policies for how best to help MAID patients pursue directed organ donation — meaning organ donations where the donor specifies what person is to receive the organ or organs ahead of time. These policies should align with the regulations for living donation — organ donation by living donors — for their specific region.
Data on organ donation after MAID should be collected by the organizations that carry this out, and should be a priority.
Medical assistance in dying was first decriminalized in 2016, and Bill C-14 came into effect that year, creating an end-of-life MAID regime. The idea was to give Canadians who were facing intolerable suffering due to something like a terminal disease the ability to choose a medically assisted death they could plan and have loved ones present for. Decriminalizing MAID allowed physicians and nurses to provide this service without facing legal repercussions, but the sensitive nature of the idea of MAID necessitated clear regulations for when and how this could be applied.
The regulations and eligibility requirements for MAID saw a substantial update n Bill C-7, passed in 2021. This came after the Superior Court of Quebec ruled that it was unconstitutional to require “reasonable foreseeability of natural death” as a condition for accessing MAID.
In 2023, Canada extended a temporary exclusion of MAID eligibility for situations in which a person’s sole underlying medical condition was mental illness.
The inclusion of chronic mental illnesses as something that a patient can cite when seeking MAID has been the most controversial update to the MAID regulations. Supporters frame it as those with serious mental health issues wanting to be treated equally to those with physical conditions that cause suffering, but critics frame it as the government failing those with serious mental health issues by not developing and funding proper mental health supports and interventions that could stop someone from considering MAID by improving their situation.
In the case of this new organ donation guidance, authors recommend that the guidelines be widely publicized in order to best inform clinicians and patients.
“In jurisdictions reliant on patient initiation of donation after MAID, lack of awareness of the option may result in missed opportunities,” they wrote. “Jurisdictions without central coordination of MAID may experience similar challenges.”
With files from CTV News medical correspondent Avis Favaro
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