The best way to encourage organ donation

Nova Scotia’s organ donation community is in a dither over Health Minister Leo Glavine’s out-of-the-blue announcement that government will consider legislation to require citizens to opt out if they don’t want their organs and tissues to save lives after they die.

There exists a vexing gap between intention and action on organ and tissue donation. When asked, nine out of ten Nova Scotians support donation, but only about 55 percent get around to registering their status as donors on their health card.* As a result, hundreds of people whose lives could be saved, or greatly improved, languish on waiting lists—or die—while useful organs and tissues rot in cemeteries.

Useful organs here...

Useful organs here…

...not here, please.

…not here, please.

There’s lots of speculation about the reasons for this gap. Perhaps it’s inertia. People don’t like to think about death. Superstitious people may worry that signing their consent might create a jinx. Reversing the onus could put inertia on the side of making organs and tissues available, instead of defaulting to non-consent.

Four years ago, the legislature took a half step in that direction, passing a law that would make a donor’s expressed wishes binding, so squeamish family members couldn’t override a patient’s consent after death. Perhaps fearing highly public bedside confrontations with distraught relatives, the NDP government lost it’s nerve, and failed to proclaim the bill.

The proposed law was hobbled by onerous requirements to ensure consent was “informed.” Before signing what had previously been a routine consent form, patients would have been required to read through and sign off on a thicket of lurid descriptions about the post-mortem removal of organs. It might well have lowered consent rates.

The idea of reverse onus is tempting, but there are good reasons to worry it, too, might make matters worse instead of better.

  • Under our present system, failure to register as a donor does not rule you out as a potential donor. Family members may still consent to donation after death, and many do, especially when medical personnel trained to make a tactful approach do the asking.  In effect, the present system has two categories: “yes,” and “maybe.”
  • An opt-out system would have only a “yes” or a “no,” and the “no’s” would be irrevocably lost as donors. No relative could override a registered opt-out.
  • Many people harbour the mistaken impression they are ineligible to donate because of their age or some medical condition, past or present. They are often wrong. Under an opt-out system, some people would disqualify themselves unnecessarily, based on mistaken beliefs about eligibility. (The take-home here: leave decisions about medical eligibility to medical experts.) 
  • A small percentage might be so resentful of what they consider the coercive nature of an opt-out system, they might opt-out for spite. You just know the tinfoil hat brigade would come out of the woods proclaiming a government conspiracy to institute death squads.

I don’t have a lot of patience with people who refuse to sign their cards, or don’t get around to signing them. Whether out of ignorance, superstition, selfishness, or inertia, they are allowing potentially life-giving organs and tissues to moulder in the ground, when they could help others. That’s unconscionable. If I could, I would make donation mandatory.

Short of that, government should proceed carefully in the design of legislation that maximizes donation rates while avoiding unintended consequences. They must also resolve not to let timid legal advice sabotage their bill.

As for you, dear readers, please take out your wallet right now and check your health card. If the word “donor” is not stamped on its front, then download this form, fill out copies for yourself and everyone in your family, children included, and mail or fax the completed forms to the address or fax number shown.

Equally important: Make sure your next of kin know you want to be a donor when you die. There’s lots more information here and here.

[Disclosure: I sit on the Nova Scotia Advisory Council on Organ and Tissue Donation. My views do not reflect those of the council, but they are informed and carefully considered.]

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* There is a widespread misconception that organ donor status is recorded on your driver’s licence. Not in Nova Scotia. It’s the the health card renewal form you fill out every four years.