An acquaintance of mine who lives a few streets over recently posted a desperate plea for help on Facebook. Her husband?a Type 1 diabetic for most of his life’suddenly became a statistic. He has suffered severe kidney failure because of his diabetes. The family is now facing a race against time to find a new kidney for him before his own gives out, and, in desperation, they used social media to appeal for someone to come forward so they can find a match. They are parents of three children, which brings an additional sense of urgency to the situation. But all the family can do is wait, hope, and pray that a miracle happens soon.
This story puts a face to the issue of organ donation, but it is not unique. Currently, over 4,500 Canadians are waiting for an organ or tissue transplant. The demand is increasing due to the increase in the population and the percentage of aging Canadians, but the number of people donating their organs and tissues has not kept up with this. In 2014, the most recent statistic released by Health Canada, 278 people died waiting for a transplant.
But the issue of organ donation remains a taboo subject; 90% of Canadians agree that donating is a good idea, but only a small percentage give consent to become a donor. This creates a frustrating situation for the medical community as well as the families who are desperate to see their ill loved ones receive a new organ. No one knows the reasons why there is such a discrepancy between wishing to donate but not following through with those wishes. It is something that government, academics, and doctors are still trying to figure out.
Organ donation might seem straightforward, but it is actually a complex process. The largest factor in the low donation rates in North America is that there are inconsistencies in the legal process to give consent to donate. Particularly in the Canadian system, there is no uniform way that the organ donation system is managed, since the provinces are responsible for their own health care policies. There is no national registry of Canadians who wish to donate their organs and tissues, whether living donors or when they are deceased. Conversely, there is also no real-time national database of those who are waiting for a transplant. While a national list is a great idea, establishing one is complicated. The major impediment to creating a national system is Canada’s vast geography. Organ donation is a race against the clock to keep the donation viable and in a transplantable condition. There are often only a few hours in which to harvest an organ from a matching donor, transport it, and then transplant it into a recipient. If, for example, an organ was found in British Columbia but the recipient was in the Maritimes or even in the Arctic, how could that organ be transported within the required window of time? Because of the logistics, organ donation remains a provincial?or even regional?matter.
And most people just don’t like to talk about it. Donating body parts for transplant requires the donor to pass away before those parts can be used, so it is not an easy conversation to have. But this isn’t always the case; living donors can donate a portion of their liver, a kidney, part of their intestine or pancreas, blood products, and bone marrow. Still, most donations are “deceased donations”, that must be done within 24 hours of a donor’s death. For families who are dealing with the raw grief that their loved one has passed away?often in sudden and tragic circumstances such as a motor vehicle crash?it is incredibly difficult to come to terms with that loss and then make the decision to release their loved one’s organs to be transplanted in the time-frame required.
This is the reason why the issue of consent has become paramount. Right now, Canadian organ donation functions on an “opt-in” basis. This means that a person must provide express consent that they would like to donate their organs when they die. This is done by filling in a medical form or adding a clause to their will. In some cases, even if the donor has not expressed previous explicit consent, particularly in the case of child donors, families can agree to donate their organs and tissue on their behalf. Provinces are also starting to enable a provision that indicates consent through vehicle registries or when a person renews their driver’s license. But medical professionals say even this is not enough to broaden the database of organ donors to satisfy the deficit.
Many countries are starting to take a bolder approach. European nations, including Spain, Sweden, France, and Poland are leading the way in “opt-out” consent, also known as presumed consent. In this system, it is assumed that a person consents to donate their organs and tissues after they die unless they specifically forbid it. The World Health Organization is monitoring organ donation statistics in these countries to see whether donation rates increase due to opt-out policies. It will then make recommendations and set guidelines for other nations. But this system has caused controversy among those who decry its heavy-handed approach, and religious groups have also expressed concern that this goes against principles of religious freedom and human rights.
In North America, it seems that the best plan that is available is to raise awareness of the issues around organ and tissue donation. There is a lot of misinformation that still circulates. Popular culture, including medical shows on television, is thought to be one of the main sources of incorrect facts. Health Canada has agreed in principle to launch public education campaigns to address the reality versus the myths of organ donation, but so far, putting awareness strategies into practice has been slow and sporadic. Unfortunately, unless someone has a personal experience with a loved one who needs a transplant to survive, the issue is rarely given a thought. Social media is a tool that is increasingly being used to raise awareness; families, like the one in my community, are often faced with little choice but to take matters into their own hands and launch social media appeals that will hopefully result in finding a matching donor. While some might view this approach as intrusive and unethical, families often don’t know what other alternate routes they can take to tip the odds in their favour.
April is National Organ Donation Awareness Month in the United States, and Canada observes National Organ Donation Awareness Week during the last week of April. Canadian Blood Services and provincial organ donation organizations urge Canadians to take three important steps: to make the decision to donate organs and tissues, to register their intent to donate, and?perhaps most importantly?to have open and frank conversations with loved ones about organ donation. This is an issue that is, literally, life and death, but also one of tragedy and hope. Through great personal loss as well as the tragic circumstances that often accompany a loved one’s passing comes an amazing gift of humanity; the selfless act of giving life to another person.
Carla is an AU English major who lives and writes in Calgary Alberta.
