OPINION: What is the role of the family in consent to organ donation?

Dr. Matthew Weiss is a pediatric intensivist at the CHU de Québec and medical director of organ donation at Transplant Québec.

Although a person may register their intention to donate their organs in advance, this intention will not be confirmed until the potential for organ donation becomes a reality; that is to say at the time of the person’s death, when they are brought to the emergency room or to intensive care.

As an intensivist (doctor who cares for seriously ill patients), I have to prioritize the patient’s interest. When the latter is unable to express these wishes, I am however obliged, by law, to turn to the family.

It is up to health professionals to address this delicate issue with the family, in often emotionally charged circumstances. Not only does the family have lost a loved one, but its members must also absorb the doctor’s explanations regarding such complex concepts as the difference between brain death and coma. Not to mention that a conflict may arise if the family refuses to consent to organ donation, even though the consent of the deceased has already been duly recorded.

The option to ignore the wishes of the family and proceed with the organ removal would require special means, such as a court injunction denying the wishes of the grieving family – a prospect that we clinicians find difficult to accept. .

A survey of Canadian intensivists found that more than half would not proceed with organ removal if the family objected. Aware of this concern to respect the wishes of families grappling with the loss of a loved one, Transplant Québec has concluded that the steps leading to organ donation cannot be initiated when the family opposes it.

Such a situation is neither in accordance with the law nor with public opinion. A recent survey conducted by Transplant Québec reveals that 70% of respondents are not in favor of the family having the last word in organ donation.

Some believe that the law is clear: the system must respect the wishes expressed in advance by the potential donor, except when there is a “compelling reason” not to take these wishes into account. This prescription, provided for in the Civil Code of Québec, has not been modified for more than 30 years. The exact definition of the term has never been clarified and never tested in court.

Therefore, the responsibility rests with us as clinicians and hospital administrators to determine what constitutes a “compelling reason”. Sometimes the answer may be obvious, such as when a patient has a medical condition, such as cancer, that can be passed on to an organ recipient.

However, other situations are not so clear.

What to do when family members say that if their loved one had known the organ donation process would take several days, they would have refused to give consent? Or what if the family insists that the loved one has changed their mind, but hasn’t had time to register the change in the organ donor registry? Our experience shows that if these reasons are rarely encountered, they can be invoked to justify a refusal.

The only conclusion we can draw is that there is no clear directive to resolve this situation in Quebec. For Transplant Québec, there are no easy answers and the organization does not have the power to change the law.

For this reason, we favor a public consultation aimed at seeking the opinion of those involved in organ donation and transplantation, as well as the public. Such a consultation would allow various voices in Quebec to determine together what an officially expressed “yes” really means at these critical times when organ donation is possible.

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