Should Canada adopt an “opt-out” system for organ donation?

On January 1 of this year, France adopted a new “opt-out” organ donation policy, whereby all deceased French citizens are considered to have given “presumed consent” to the harvesting of their organs and tissues for organ donation unless they entered their names on an “opt-out” registry or have left specific instructions regarding their wishes with family members or next-of-kin. “Opt-out” organ donation policies (unlike “opt-in” policies, which, in countries like Canada, require potential organ donors to sign up on their provincial donor registries) are estimated by a World Health Organization study to raise the rate of organ donation by between 25-30%.

BC residents can opt-in to donate at transplant.bc.ca.

BC residents can opt-in to donate at transplant.bc.ca.

C’est magnifique, non? Why not adopt this system in Canada right now, and save thousands of lives? Isn’t this a no-brainer? Well, not necessarily.

I would like to state that I myself am an organ donor. I do not believe that any part of “me” will be left in my body once I am dead, and if any of my organs or tissues can be of use once I no longer need them, great. But (and this is, I believe, a very important “but”), I signed up for this. When I die, neither the provincial nor federal government will “presume” my consent for organ donation; they will actively search for it in their registries. In an “opt-out” system like the one France has instituted, my body (once deceased) would belong to the state medical system, unless I had made a concerted effort, during life, to declare otherwise.

I find conversations about “opt-out” organ donation policies troubling, for three reasons:

  1. The idea of “presumed consent” is highly problematic.

As a feminist, it should not be hard to understand why the very notion of “presumed consent” when it comes to bodily autonomy is alarming to me. When it is still so very hard to achieve a conviction for sexual assault in Canada, do we really want any branch of our Canadian or provincial governments enshrining the concept of “presumed consent” in law? Do we want promote the idea that, actually, there ARE times (such as after death) when a person’s body can be used in ways to which they did not SPECIFICALLY and FREELY consent, unless they have made some kind of pre-emptive statement to the contrary? When Canadian judges are still asking rape victims why they couldn’t just “keep their knees together”, I think we have a long way to go before any arm of the Canadian government can be trusted with our bodily autonomy.

  1. The needs of hopeful organ recipients (and the convenience of transplant surgeons and medical staff) are often already put ahead of the rights of donors (and their families).

While I cannot imagine the physical and emotional suffering experienced by Canadians waiting on the transplant list (or their loved ones), the fact of the matter is that no donor organ recipient or patient on the transplant list is “owed” an organ. The organs of deceased Canadians do not “belong” to the living, they belong, completely and only, to the deceased person whose body they are in. If that same deceased Canadian wishes to give another person a second chance at life through organ donation,that is a wonderful thing (and I do believe voluntary organ donation is something to be encouraged by all levels of government and by society at large). But this gift, of someone else’s flesh and bone, cannot, and should never be, assumed.

Even in opt-in systems like ours, there is already reason for concern that the needs of those on the transplant list are put before the rights of organ donors. In 2012, Dick Teresi (former editor of Science Digest) released a book entitled The Undead: Organ Harvesting, the Ice-Water Test, Beating-Heart Cadavers—How Medicine is Blurring the Line Between Life and Death. In an interview with Maclean’s Magazine’s Brian Bethune, Teresi expressed concerns about the troubling practices he observed around organ donation in the United States (practices which he considers to be identical in Canada), for example, that the criteria for pronouncing you dead may have more to do with ensuring your body remains in a good condition for organ harvesting than with whether or not your body is, in actual fact, 100% biologically “dead”. Here are a couple of disturbing excerpts from that interview:

Q: Some of what you report is disturbing, especially the way doctors rushed to embrace the concept of brain death, even ignoring the brain-wave evidence of EEGs when they proved inconvenient. Why was that?

A: It’s all about the organs. The brain-dead are legally, but not biologically, dead. Their brain stems aren’t working, but vital organs still function—you’ll pee, maintain your body temperature, and your wounds will continue to heal. You may—it’s not certain, but you might—feel pain during surgery. You’re in this weird undead zone. It’s during that time your organs are taken. Why not wait until you’re dead-dead? Because the transplant people want your heart to continue beating, to keep the organs supplied with oxygen and nutrients, to make the organs more usable for their customers.

[…]

Q: You don’t have to throw money into the equation to see the compelling drive for organs, which links tightly to what you call doctors’ secular religion. They don’t believe the brain-dead have “personhood,” that they are alive in any real sense, not in the way the dying patients who need the organs are alive.

A: Not so fast. One study showed that 35 per cent of the doctors and nurses who worked directly with donors in the hospital believed they were alive, but didn’t care, they thought the organs were more important. And they also believe and frequently state—you’ll see it in every pamphlet from an organ bank—that when you’re brain-dead you’re never coming back. Well, of course you’re not coming back, although in the past some have. Now, though, your liver’s off in Mickey Mantle and your kidneys are being flown to some Kuwaiti oil sheik. You’re not coming back.

[I want to note that Teresi’s comments are obviously very provocative and you will need to decide for yourself what to make of them. A cursory Google search does not bring up any loud opposition from the medical community denying the practices he has observed. Nevertheless, and despite my own unease, I have chosen to remain an organ donor.]

I also sense, in discussions about organ donation, a certain amount of moral judgment. We can see this at play in a recent Slate article, Self-Driving Cars Will Make Organ Shortages Even Worse, by Ian Adams and Anne Hobson, in which concern is expressed over the effect the predicted reduction of vehicular deaths (a significant contributor to the U.S. transplant system) caused by safer, driver-less roads will have on those waiting for donated organs. Because most vehicular deaths can be attributed in some way to human error, these vehicular deaths are labeled by the article’s authors as “preventable.”  This label isn’t necessarily erroneous, however, the appearance of a word like “preventable” in a discussion about organ donation sets up a false moral dichotomy: on one side, you have the victims of vehicular accidents, killed by “preventable” incidents (which may therefore conceivably be their own fault), and on the other, the “innocent” patients on transplant lists, who are desperately ill through no fault of their own. You have on the first side, a dead person, who has already “lived a good life”, and on the other, a person who is still alive and wants the chance to do the same. There is a sense, in these discussions, that the transplant hopefuls have a right to the organs (especially when people use language like “organ shortage”, as if “supply” could, or ever should be, controlled for), and that the deceased, because they were driving dangerously, or because THEY haven’t suffered the way ill patients have suffered, or simply because they are dead, have forfeited this right, even though the organs in question come from their bodies.

Generally speaking, I tend to believe that the rights of the living should trump the rights of the dead, however, in this case, we are talking about a person’s body, the only thing they have left behind that we can say truly belongs to them. As harsh, and unfeeling, and as horrible as it sounds, if one of your own organs is failing, you have no right to expect to receive someone else’s (especially without their explicit consent), and the medical system has no right to promise it to you.

To put it another way, I hope that if you need an organ, you will receive one. But I am not comfortable with a society that massages its laws to try to guarantee you one. Once dead, human beings do not become used cars to be stripped for parts. They are still deserving of human dignity, and whatever human rights remain to them.

  1. These conversations assume continued reliance on human organ donation without looking to the future.

Since the first successful kidney transplant in 1954, the field of medicine has come a long way, including in the area of synthetic organ development (relatively new techniques, like 3D printing, present huge amounts of promise). Arguably, once the science is worked out, manufactured organs will be much better than their donated counterparts (they can be custom-fit, won’t have been “used”, they will be genetically neutral and adapted to the recipient and therefore the risks of rejection will be much lower, and they do not depend on the deaths of others). Instead of crunching the numbers on “organ shortages” as if we are not actually talking about REAL PEOPLE who have to die so that ”supply” can meet demand, we should be looking into how we can support other fields related to organ transplant, and to a future where no one needs an organ “donation”, and anyone whose organs are failing can have reasonable expectations of synthetic transplant.

However, until that day, the fact remains that we do have far more Canadians waiting in need of organ donation than we have suitable donated organs available. Incredible anguish is endured and lives are lost in the waiting. So what to do?

My humble suggestion is that before either our provincial or federal governments take any steps to adopt “opt-out” organ donation policies, that they first undertake comprehensive consultation with the public to find out exactly WHY so few Canadians are opting-in to organ donation in the first place. The reasons may be as varied as simply not getting around to signing up (a problem that, yes, opt-out policies would solve), to a lack of transparency and information about organ donation** and the rights of the donor, to serious concerns like those voiced in Teresi’s book.

Once these consultations have taken place, I would suggest that governments take meaningful steps to address any concerns brought forth, including making signing up (and making changes to your registration) for organ donation simple and easy, nationalizing organ donation registration systems to allow organ donations from Canadians who happen to die while travelling in other provinces, and by introducing a bill of rights for organ donors that allows the donor (or their family), rather than the medical establishment, the right to choose their preferred biological criteria for pronouncement of death and subsequent organ harvesting. Unless and until the provincial and federal governments of Canada can satisfactorily tackle these difficult life-and-death questions, I see no reason to entrust them with any kind of “presumed consent” over any part of my body, alive or dead.

————–

**During a dental surgery a year ago, a part of my gums was grafted with “Alloderm”, a product made from the skin tissue of (presumably American) cadavers. Since skin is technically an organ, the tissue in my gums actually came from organ donors. I assume these donors thought their tissue would be going to burn victims (much of it does) as opposed to being commercially sold to dentists’ offices and cosmetic surgeons for people who get boob jobs or brush their teeth too hard. This is just one of the many areas of non-transparency that concern me and I must confess I am ethically uneasy whenever I remember that part of my gums actually once belonged to someone else who may not have understood that their tissue could be sold.

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