Social Policy in Ontario

Nova Scotia recently unanimously passed a law that, once it takes effect in mid- to late-2020, gives every Nova Scotian the opportunity to be an organ and tissue donor unless they opt out. This approach, a first in North America, is referred to as presumed consent. Countries that enhance their donation systems and adopt this approach usually, but not universally, have seen donation rates increase.

An increasing number of Canadians have end-stage organ failure optimally treated with transplantation. This lengthens life and increases quality of life for recipients, and yields dramatic cost savings for the health-care system (particularly in kidney failure), but number of donors limits access. Thousands of our neighbours suffer, hundreds will die, and costs increase while patients wait for an organ.

Only about 2 per cent of patients dying in hospital, after medical screening, meet criteria to donate. Most nurses and doctors have limited education or experience with donors so only a fraction of potential donors are identified. It’s about six times more likely someone will need an organ than be a donor in Canada.

Our system needs to improve. Strategies such as mandatory referral of potential donors, critical care leadership, donation physicians, establishment of “donation after cardio-circulatory death” programs, trained donor co-ordinators, routine death audits and donor registries increase donation rates but have been variably adopted across Canada.

Ontario, with these things in place, has seen donation rates double to 25 donors per million (DPM). Could an “opt-out” approach help Canada get from a donor rate of 22 DPM toward 40 DPM, the rates in the most successful countries in the world?

About 90 per cent of Canadians say they support organ donation but registration of their intent to donate is much lower, from 25 per cent in some provinces up to 54 per cent in Nova Scotia. Some of the reasons why people who support donation but do not register their intent include: an assumption that medical conditions exclude them or not wanting to think about their own death and therefore about donation. Consenting to donate does NOT mean health-care teams do not try as hard to save your life.

Presumed consent clarifies what will happen at death and will normalize donation discussions amongst health-care teams. Medical teams will refer all potential donors to be screened (which infrequently happens now in Nova Scotia) so identification and referral improves.

As an intensive-care physician, I work with families during difficult times. They are overwhelmed, exhausted and stressed. Everyone will be assumed to be a donor unless registered to “opt out,” relieving the family of the burden to decide, which clinicians can tell you, is often very difficult in a crisis.

We know this legislation will lead to discussion. A dialogue around this, supported by culturally sensitive, accurate information, enhances understanding so people will become informed and then tell their families so their intention to donate or not can be accurately represented. Presently, we see the wishes of patients who declared themselves donors being overridden up to 20 per cent of the time. “Not registering an objection” by an informed patient may be more reflective of patients’ wishes than the “informed consent” we now obtain from family.

Is the value of the voluntary donor compromised in this model? Certainly not to recipients. Families who consent to donation now, but only after discussion and reflection, are no less appreciated than those who are donation advocates, and equally comforted by the legacy of their loved one who saved lives.

An informed public will understand the efforts to improve the donation system. Optimal end-of-life care includes supporting organ donation. We will intentionally include historically marginalized communities in our educational efforts, and there are exemptions for particular groups (children, new residents, and those not competent to provide consent). Public trust in our system is crucial, so attending to the needs of the vulnerable will be a priority.

Autonomy is important. For those who do not support legislation: get informed, make your decision, and let your family know. Our health-care system will respect your wishes.

Several years ago when Premier Stephen McNeil contemplated this, I resisted. Since then, a lot of work has been done, and now, Nova Scotia is ready to lead. This legislation will result in many more Nova Scotians receiving an organ transplant, which for them and their families is the gift of life.

Dr. Stephen D. Beed is an intensivist and anesthesiologist in Halifax. Since 2006, he has served as the medical director for the Legacy of Life Provincial Organ and Tissue Donation Program at the Nova Scotia Health Authority.

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NO – Jed Adam Gross, Transplant ethics consultant at Toronto’s University Health Network

The good that comes from organ donation is palpable. More than 16,000 people are living with functioning kidney grafts nationwide. Donated hearts, livers, lungs and other organs can enable recipients to enjoy decades of additional life. None of this involves rushing into a burning building. In Ontario, you can register your willingness to donate online.

Although registrations (and actual donations) have increased in recent years, thousands of patients eligible for transplant are on provincial waitlists. Some may receive a kidney or part of a liver from a living donor. Most will depend on an allocation system that offers deceased donor organs, as they become available, based on factors like blood type.

Donors — and other persons — are declared dead according to neurological or cardio-circulatory criteria, depending on the circumstances of their passing and clinical test results. If circumstances permit donation, a separate medical team begins retrieving the organs only after trained professionals have confirmed that this would be consistent with the individual’s values.

Some observers contend that the public would be better served by a presumption in favour of donation, with one or more mechanisms for opting out. Theoretically, the “opt-out” approach leaves room for respecting individual wishes after death: It just shifts the onus of making one’s wishes known from those who would donate to those who would not. Proponents characterize this shift as choosing the optimal default rule.

In April, Nova Scotia enacted legislation that would make it the first opt-out jurisdiction in North America, following a preparatory phase. Why shouldn’t all of Canada adopt this framework now?

Sustainable transplant infrastructure is congruous with its social context. Consider other societies’ divergent experiences with opt-out. In Europe, clinicians still consult surviving family members, who effectively retain veto power over donation. Scholars identify Austria, Belgium and Hungary as the jurisdictions that have come closest to routine organ retrieval absent a known first-person objection. Acceptance in those countries is said to be a legacy of earlier norms governing autopsies. Other societies, including Brazil, saw declines in donation following opt-out legislation. The benefits of formal default rules, disconnected from supportive cultural and structural underpinnings, are likely to be modest at best.

Not so the risks. As long as transplant medicine is responsive to the public it serves, it depends on fragile trust. Patients must be confident that end-of-life care will not be compromised by others’ plans for their organs. Amidst machines that replace bodily functions, relatives at the bedside have little choice but to rely on expert determinations of life and death. Citizens seeking assurance that organs are allocated equitably should be prepared to confront dense algorithms. Perceptions of exploitation anywhere in the system can provoke opposition to donation, and opt-out systems are not immune.

System overseers have fashioned safeguards to ensure trustworthiness, such as boundaries between donor and procurement teams. Clinicians are working to mend relationships with members of populations that have reasons to feel disserved, notably Indigenous people. Requiring express permission to retrieve organs protects these investments by reinforcing the principle of earned trust.

Canadian health care is in a dynamic moment. We are sorting out how to manage new resuscitation and organ support technologies, relationships with commercial enterprises, and requests for medical assistance in dying. While we cannot wish these fraught questions away, loosening permission requirements around donation could strike the more circumspect among us as too much boundary revision, too fast, with too little accountability. Authorities in Nova Scotia, to their credit, recognize the importance of sound logistics and clear public communication before proceeding.

Transitioning to opt-out while respecting diverse stakeholders will require reaching them with adequate information in language(s) they understand. Means of opting out must be accessible and reliable. Efforts to ascertain patients’ wishes, and deference to relatives, should not depend on social status. In a vast and complex society, these are formidable challenges.

Policy-makers might instead prioritize less controversial reforms with demonstrated impact. Donor registrations climbed in Ontario after making the opt-in process more user friendly. A 2018 national conference highlighted the need for clearer accountability structures to ensure that hospitals properly refer eligible donors. Other promising recommendations tap into the potential of greater family engagement and national co-ordination.

We would be wise to watch Nova Scotia while pursuing a different course.

Jed Adam Gross is a transplant ethics consultant at Toronto’s University Health Network.