Would presuming consent to organ donation gain us anything but trouble?

• Author: Ammann, Mark
• Position: Canada

Organ donation is often in the news, ranging from the considerable media attention following the death and subsequent donation by Australian actress Natasha Richardson to the saga of Toronto baby Kaylee Wallace and the (ultimately moot) debate over whether to donate her organs to a fellow infant patient. Canada's first long-distance "kidney swap" also made national headlines in June 2009.

Reform of the donation system also has a way of capturing attention. Gordon Brown's attempts to implement presumed consent in Great Britain received consistent media coverage. (1) As the finishing touches are being added to this article, Wales is now considering the merits of changing its system to presumed consent. (2)

When organ donation is discussed, Canada's current donation system is often portrayed in less than favorable light. Often times, such articles include calls for reform of our organ donation system, sometimes focused on instigating presumed consent. For instance, a recent editorial in the Calgary Herald suggests the following after a discussion of Baby Kaylee's circumstances:

One solution may be to follow Spain's example and assume that the organs of anyone who dies will be transplanted unless otherwise specified in advance. This would provide a larger supply of donor organs and help reduce the possibility of a scenario like that at Sick Kids [Hospital] recurring. (3) An older headline from the Edmonton Journal reading "Canada's organ-donation rate among world's worst" provides less specific criticism in a much more direct manner. (4)

Is Canada's system of organ donation really that bad? Is changing our consent system necessary for boosting our donation levels? Do we really have an unacceptably low organ donation rate? I argue that the answer to all these questions is "no."

This paper will attempt to defend Canada's current donation organ consent system. While both live and cadaveric donation are important factors to consider in this context, this paper will only take issue with the consent system for post mortem cadaveric organ donation. (5) Specifically, I intend to argue that (1) Canada's rate of organ donation is not as bad as portrayed, (2) presumptions regarding consent have limited impact on donation rates and (3) legal, political and practical factors in Canada favor the retention of our current explicit consent system.

What is Explicit Consent vs. Presumed Consent?

Canada's Current System of Explicit Consent to Cadaveric Organ Donation

Organ donation legislation is within provincial jurisdiction and, as a result, there are a variety of different legislative approaches. Despite differences, however, all provinces operate on an "express consent" (or "opt in") basis. In an express consent model, organ donation can only occur after a potential donor has expressly consented (through registration in a donor registry, oral direction or written direction) to the removal of their organs after death. If the donor does not consent before their death, a surrogate decision maker is generally appointed by legislation to decide for the potential donor. Surrogate decision makers are selected in order of legislative priority, with non-estranged spouses at the top and a non-family member lawfully possessing a donor's corpse at the bottom. The key feature in an express consent system is that, without some positive consent (from the donor or surrogate decision maker), the donor will be presumed not to have consented and no organs will be removed.

While a donor's consent to have their organs removed for transplant following death is legally binding and sufficient to authorize the harvesting of those organs, (6) in practice a potential donor's family effectively possesses a veto. Hospitals or transplant agency staff will, if a potential donor has family, request the family's permission even if the donor has already recorded consent. This creates the somewhat curious possibility that a donor's family could overrule an otherwise valid donor consent. The status quo is summarized by Dr. Fady Moustarah, who writes

Under our current system, there is little incentive for anyone to sign a donor card. As a potential donor I have to foresee my death, realize the need for organs and sign my donor card as a goodwill gesture, all the time realizing that my family's wishes might be given precedence over mine. (7) There are several reasons why a family's wishes continue to play such an important role. Arnold notes that convening with family is necessary to determine if a previously given consent has ever been revoked (though he also notes that there is no obligation on a family to prove the existence of a revocation). (8) There is also the prospect of malpractice suits or statutory and professional penalties for removing an organ where a family is not consenting. (9)

Perhaps most significant is the fear that removing over familial objections would draw significant negative attention and undermine the trust needed between the public and medical profession. This concern was made painfully clear after the Alder Hey and Royal Infirmary scandals in Great Britain. (10) Though neither of these scandals related directly to organ donation or transplantation, it was accepted that these events had considerable impact on the debate surrounding a proper organ donation system in the United Kingdom. (11)

The Alternative: A Presumed Consent System

A presumed consent system is conceptually simple, and is intended to specifically increase donors among those who have failed to leave instructions. Under a presumed consent system, all deceased patients are presumed to have consented to be organ donors in the absence of a specific withdrawal of consent (generally recorded in a national central registry). For this reason they are sometimes referred to as "opt out" systems, since one is automatically considered to be a donor unless a refusal of consent is recorded.

The theoretical advantage of a presumed consent system is simple. Given that many (if not most) citizens will fail to discuss their donation wishes with family or record their wishes in writing, presuming consent instead of non-consent should remove a barrier that would have otherwise barred such donations.

There are various types of presumed consent systems. A truly irrebuttable presumption of consent would be, in essence, conscription of organs. A "hard" presumed consent system allows donors to opt out (usually by registering a non-consent with a central registry), but, failing this, would allow no other factor to interfere with organ or tissue removal. Family vetoes would have no place in such a system. These systems exist more in theory than practice since, as I will discuss later, most systems, in practice, allow some (if not considerable) family involvement even if such involvement should be legally precluded. The more common "soft" presumed consent systems will avoid retrieving organs if there is any objection to the procedure (like a family's refusal to allow the procedure). Indeed, "soft" presumed consent systems often look a great deal like Canada's express consent systems, since both often give the family a veto in practice.

While those opposed to presumed consent often suggest that practical, administrative or technological barriers will make a presumed consent expensive, unwieldy or unworkable, this paper will not address these criticisms. (12) Instead, this paper will argue that presumed consent is not compatible with Canadian health law, and will suggest that this is not a real concern since the actual effect of presumed consent on donation rates is overstated.

How Bad is Our Rate of Donation?

Before we can gauge the necessity of any reform, the status of Canada's current system warrants consideration. Undoubtedly Canada is, like all other developed nations, facing an organ shortage. The gross number of donations has remained reasonably consistent over the past ten years, though the actual cadaveric donation rate has declined (slightly) from close to 15...