Eye for an Eye: Addressing Ontario’s Tissue Donation Shortage

Jordann Thirgood

It’s the holiday season. A time of year when it’s common to see intense public campaigns emphasizing the importance of giving to those in need – and not just giving gifts under the tree but also human blood, bones, and skin. Initiatives like the Canadian Blood Services’ “Wrap it Up” campaign remind us that blood and organ donation rates are disappointingly low in Ontario, particularly around the holidays. This year, however, a reminder of that sobering fact came a bit early in November when newspaper headlines declared that non-organ tissues are also in short supply, especially in the GTA. The news story was the result of a recently released report by Maryland’s GJC Consulting Group, commissioned by the Trillium Gift of Life Network (TGLN). The report estimates that in order to meet current demand, domestic donation rates would need to skyrocket in every area: for example, musculoskeletal and heart valve tissues by 300 and 200 per cent, respectively. Instead, the provincial government spends around $13 million each year on tissue imports to meet this demand, mainly from the United States.

This discrepancy between supply and demand is already costly and concerning, but it’s about to get much worse. One of the biggest challenges that Canada faces right now, especially in the healthcare sector, is a rapidly aging population. Medical problems associated with old age, like kidney disease, will drive up the demand for organ donations, and this is also true for non-organ tissues: falls, fractures, and loss of sight among the elderly will increase the demand for corneal tissues, bone, and skin. Furthermore, this concern is just as relevant for our primary foreign supplier, America, whose population is also characterized by a quickly aging group of baby-boomers. As the demand increases in the US, their surplus and ability to export to Ontario will diminish.

In Ontario, organ and tissue donation are one and the same. We use an informed consent system here, in which one must inform ServiceOntario that he or she wishes to be a donor either online, at a counter, or by mail. While 85 per cent of Ontario residents have voiced their support for donation, only 27 per cent are actually registered. There could be many reasons for this inconsistency, such as religious or cultural beliefs surrounding body integrity, a perceived lack of knowledge of brain death, or mistrust in the medical community. Our opt-in system means that the onus is on the individual to take the initiative of going through the process of becoming a donor, rather than assuming consent to donation at the outset (i.e. an opt-out system). If he or she does not register during their lifetime, the onus is then on the family to make the decision – a discussion that is not likely a top priority after losing a loved one. The TGLN report also points out a province-wide trend in which isolated rural areas are more likely to register than cosmopolitan ones. Toronto, for example, only had an 18 per cent registration rate as of June 2015 (ranked 170 of 179). Among the top communities are small northern ones, such as Lively, Ontario, with a 57 per cent rate. These regional discrepancies suggest that social cohesiveness and individual sense of belonging may be of significance.

Regardless, the shortage is alarming. A single donor can provide enough organs to save 8 lives and enough tissue to enhance up to 75 lives. Fortunately with a population of 13.6 million people, Ontario has a strong foundation of potential donors—it just needs to be realized. The report makes a few recommendations relevant to tissue banking (i.e. storage), such as building a new multi-tissue facility in Toronto and establishing a formal coroner screening, consent, and recovery program. Given the scale of the issue, however, some firmer policy tools could be utilized, and we can learn important lessons from those abroad.
Take the US for example: a country with such a surplus that they have saved us from life-threatening shortages. The government has invested heavily in the training and education of a well-staffed network of donation coordinators, especially in communicating with the families of the deceased (who have been identified as having organs or tissues suitable for donation). Similarly, the Spanish government has carried out a comprehensive strategic communications approach with their coordinators, including communications with both stakeholders and families. Ongoing employee training and workshops emphasize clear communication, building interpersonal and caring relationships, and acknowledgment of important family ties. The importance of emotional intelligence among clinicians in this process cannot be overstated, and has improved family consent rates in both instances. Unlike the US however, the Spanish model uses a presumed consent legislation in which citizens are automatically considered a donor until the decision is made to opt-out. The system is considered “soft” however, as families of the deceased are always routinely consulted on the final decision to donate.

Without a doubt, Spain has been the global leader in organ and tissue donation – with rates exceeding those in any other country. There is growing evidence that Spain’s presumed consent legislation dramatically improves donation rates, and this is something that the government of Ontario should consider very seriously, at least as a long-term goal. Obviously a soft approach like Spain’s would be better received than a “hard” one, which would not involve family consultations at all. In a way, adopting such a system would not be much different from what we’re currently doing. Every individual would still have a choice in whether or not they donate – it’s just a matter nudging them towards donation by asking them to opt out, rather than opt in.

In the short term, public education and awareness will still be key. The TGLN and Canadian Blood Services have had effective campaigns on the live-saving impacts of blood and organ donation, but messaging should also include the life-enhancing abilities of tissue donation. It should be made clear that exemptions are possible for donors who do not feel comfortable giving specific organs or tissues, and that becoming a donor does not impact funeral arrangements and does not place unnecessary burdens on their families. These campaigns can be used to set the stage for a transition to presumed consent legislation in the long-term and communicate the important details to Ontarians. It will be crucial to emphasize the positive impact it will have on individuals and the province as a whole – one that extends far beyond the holiday season.

 

Jordann Thirgood is a 2016 Master of Public Policy candidate at the University of Toronto’s School of Public Policy and Governance. She holds a Bachelor’s degree in International Development Studies with a specialization in Political Economy and Administrative Change from the University of Guelph. Her areas of interest include environmental and social policy, as well as corporate responsibility.

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