Friday, June 29, 2012

Presumed Consent

There is a movement forming in Canada to get the government to mandate a "Presumed Consent" organ donation policy. Presumed consent or "opt out" organ donation essentially assumes that everyone is willing to donate their organs in the event of brain or cardiac death unless they have opted out.

The presumed consent system is essentially the opposite of what we have now in Canada.  Currently, if you suffer brain death, your family is given the option of "opting in" or donating your organs. Also, depending on the province you live in, you may have had the option of registering your intentions via an online registry. In provinces without an online registry, you have the option of indicating your wish to be an organ donor on your drivers license. In the end though, the decision lies with your next of kin.

There are currently 24 countries in Europe who have adopted some form of the "opt out" model. In some of those countries (Spain, Austria for example) the presumed consent model has meant an increase in organ donors. A few countries actually have a lower than average organ donation rates (Sweden for example) but on average, countries who adopt this type of donation system do see higher donation rates. This is especially critical for people waiting for hearts, lungs, pancreas and some liver patients as cadaver donors are their only option. It also greatly benefits those waiting for kidneys (what 75% of Canadians on the transplant list are waiting for) as kidneys needed far exceed the number of living donors each year.

If Canada was to adopt an opt out system, advocates (including the Canadian Liver Foundation) believe the country could boost its donation rates, which is one of lowest in the world. Currently only 13 out of every million Canadians becomes an organ donor, compared with 20 per million in the U.S., and more than 31 per million in Spain.

The big question is this: are we ready for it in Canada? My opinion is a bit mixed. I think from a belief and attitude perspective we are - in some ways. When asked, most Canadians believe organ donation (in general) is a good thing. Most Canadians would have no problem accepting an organ if needed. However many Canadians simply haven't taken the time to register their choice to be an organ donor and have not discussed their wishes with their families. It isn't top of mind. Which obviously is part of the cause of our low donor rates. An opt out system would be an improvement in that regard. Which would definitely save lives.

Where I think we aren't perhaps ready is from a registry perspective. At this point, we don't have a national registry where people can note their intentions. Some provinces have great online registries while other provinces, like Alberta, are lagging substantially behind. In my mind we need a national database capable of housing the preferences of Canadians in regards to organ donation. The registry would need to be accessible to hospitals across the country somewhat similar to the UNOS system in the U.S. (but better of course). We would need a well defined national transplant program  instead of provinces working in health care silos as they do now. There would need to be a greater ability to coordinate the sharing organs across provincial borders as well. (I do know that transplant doctors, coordinators etc. do meet and share best practices across the country but it needs to be formalized and improved).

The other issue I see preventing a presumed consent system right now is the same issue that plagues our current system: awareness/apathy. There are still so many misconceptions about organ donation. For example, some people still think that religion prevents them from being donors or that doctors are less likely to save people who have registered as organ donors (not true on both counts). Under a new system, this could result in many people opting out due to a lack of understanding or fear. At least under the current system, doctors and coordinators can approach donor families  to get consent and can perhaps talk through some of the fears/misconceptions with the families of potential donors.

Most people don't have any idea what opt out or presumed consent means (here is a U.S. site explaining it). While I fully support the idea of a presumed consent system (it is a good idea and critical to saving more lives), I think we need to better educate Canadians on what that means (and doesn't mean) to them. If we expect Canadians to get on board and support the petitioning and lobbying of the government to change the system, we need to give them the "why". Without education in place, we run the risk of generating more apathy towards organ donation amongst Canadians or worse, decreasing the amount of organ donation support we currently have. I think petitioning the government is just one step of many to improve organ donation in Canada and it needs to involve an educational component so that people understand how it could improve things, while not impacting their rights and freedoms  or medical care.

I am confident we can overcome these hurdles in time-sooner rather than later with more national focus and collaboration from our medical systems as well as organ donation advocacy groups. The good news is that organ donation seems to be getting more an more press as time goes on which hopefully will create the momentum and awareness this cause needs to improve donation numbers, get more resources put towards improving the current system and so forth.

If you are ready to support an opt out system of organ donation in Canada, you can sign a petition here. To register to be an organ donor under our current system, here's a great list of links by province. Don't forget to talk to your family about your wishes.

Would love to hear your thoughts: Is Canada ready to start talking about a presumed consent organ donation system? Do you support a presumed consent system?


  1. "Presumptive" consent is just that - presumptive. I used to be an organ donor, but after witnessing 3 experiences with Organ Procurement with: a friend on the waiting list, a donor of a directed donation, and organ removal over objection of a boy's mother, I am no longer an organ donor.

    Do not presume anything - other than that this is statutory confiscation of body parts. There is good reason I have not signed to continue to be an organ donor - I don't want to. It's not that I am lazy, or too preoccupied with life to bother to register. If I supported it, I would register. It is certainly NOT my moral, ethical or humanitarian or any other obligation to participate in the coercive tactics of presumed consent.

    The entire organ donation proposition omits factual information - that most donors are on life support, with beating hearts, warm to the touch, with urinary catheters draining, digesting food, and in all other respects do not appear to be "dead". EEG's to detect brain wave activity are NOT required to diagnose "brain death" (a concept invented by the transplant industry). People should know the truth about the system & its procedures; but to do so would mean penetrating a wall of years of deceptive public relations.I am a Nurse and an advocate for that patient in the bed who they want to "harvest". The Organ Procurement personnel serve other interests.

    1. Interesting point of view. It is allways good to hear opinions from all points on the spectrum. While I've spoken to many people who just haven't found the time to register to be donors, I haven't had the opportunity to speak to people who have actively opted to not be organ donors. It is a personal decision to make.
      I believe in Canada EEG's are commonly used to determine if brain death has occurred (along with blood flow and several other tests) and it is done by a team of at least two doctors who are not involved in the transplant program. Our system and others like it may have some flaws but it also saves thousands of lives. I think its important for the system to continue to be transparent and for everyone to continue to share their ideas as to what is the best for organ transplantation in Canada

  2. I am an experienced Neuro Trauma ICU Nurse. Patients declared "brain dead" are still alive. The process of organ procurement (a 4 - 7 hour procedure) is what kills them. Dead organs are no good to anybody. NO - you can't harvest dead organs and put them on ice. Once they are dead they are useless. We in ICU go to great lengths to keep that patient alive to ensure organs in the best possible shape. We then kill them in the O.R. when we excise the heart.

    1. Thanks for the information, C Thompson!

  3. I stopped signing the organ donation card on my driver's license some years ago beacause I felt uneasy about the death declaration process. I am not against organ donation but think everyone should make an informed decision. I am sure most people are unaware that there are different standards for what death depending on where you are. I urge everyone to watch the Fifth Estate episode entitled Dead Enough.

  4. No one has the right to take my body or any part of it. I have the right to give all or some of it as I so choose. How dare someone take that right away from me.

    I absolutely would vote NO to a presumed consent organ donation policy.

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