By Peter Chow
In Canada, five people waiting for organ transplant die per week, or one death every 30 hours, that could have been averted if they had a viable donor.
The shortage of organs available for transplant has been a serious worldwide problem since such surgeries were first made feasible and safe several decades ago. Nations around the world have relied on different strategies to try to alleviate this problem with varying levels of success.
The system for organ procurement in the USA and Canada operates under the model of expressed consent – the “opt-in” system. This means that an individual will not be an organ donor unless he or she opts in, explicitly expressing consent. The desire to be a donor is typically noted on a driver’s license, in an advance directive, or by a surrogate with decision-making responsibility. While maintaining the autonomy of potential donors, the expressed-consent model has not been shown to be effective in increasing the supply of organs to a level anywhere near that of demand. Furthermore, 20% of opted-in potential organ donors do not end up donating their organs because of objections of next of kin.
In contrast, more and more countries have relied on a method of presumed (rather than expressed) consent for organ procurement. This model, called the “opt-out” system, takes the opposite assumption for granted – individuals are presumed to want to donate their organs upon brain death unless they have opted out, expressly objecting to doing so. There is usually an age limit, so that young people under a certain age are excluded. Organ donation proceeds irrespective of objections of relatives.
Spain has the world’s highest rate of organ donation. Spain’s presumed-consent law was passed in 1979 and requires the prospective donor to be declared dead on neurological criteria (“brain dead”) by 3 physicians. Once death has been declared, any individual who has not formally registered opposition is considered a potential donor. The presumed-consent policy in Spain is cost-effective; each kidney transplant performed on a patient on dialysis saves the National Health Service more than $500,000 in medical costs
Other countries with presumed-consent policies include Austria, France, Columbia, Norway, Sweden, Belgium, Italy, Greece, Turkey and Singapore. Presumed consent became law in the UK this year. In Austria, the rate of donation quadrupled within 8 years of a presumed-consent policy’s being introduced. Today, the procurement rate in Austria is twice as high as that in the United States, with the number of kidney transplants performed nearly equal to the number of people awaiting donor kidneys.
A primary objection of those who oppose implementing a presumed-consent policy is a claim of the loss of patient autonomy. Opponents to presumed consent argue that it is wrong to invade someone’s body without that person’s consent and that “absolute respect for the will of the deceased” is necessary.
On the other side of the argument, those who support presumed consent, respond to the argument over a loss of autonomy by countering that a presumed consent model actually provides more autonomy than expressed consent because it allows the donor, not his or her family members, to make the final decision. They argue that asking a family for a loved one’s organs at a time of intense grief is cruel and unnecessary and that, by presuming consent, the family’s anxiety over this decision is alleviated.
Supporters of presumed consent argue that presumed consent provides the greatest good for the greatest number of people by harming no one and benefiting many. They argue that the burden of communicating and registering preference should fall on those who object to donating, not those who support it, Supporters argue that this would also increase accuracy, as objectors are more likely to register their opposition than supporters are to sign up as donors. As a result, there would be fewer mistakes in interpreting a potential donor’s wishes.
It seems unlikely that the United States will make the transition to a system of presumed consent for organ procurement in the near future. In a litigation-happy country, fear of litigation puts a serious damper on its feasibility. In 2002, however, Delaware law specified that if a person had clearly indicated his or her wish to be an organ donor the “family cannot thwart that desire after death”. Kentucky, Virginia, West Virginia, Indiana, Oklahoma, South Dakota, and Tennessee have also “taken action to ensure that the expressed wishes of organ donors are carried out”
Based on the proportion of people who say they are willing to donate their organs (70%) and those who actually register to do so (15%), it seems that the organ shortage problem in Canada stems in large part from a failure to obtain permission to recover organs. This critical problem requires our attention.
Health Sciences North Hospital in Sudbury was recognised this year for its high Conversion Rate. Conversion Rate refers to the percentage of actual organ donors achieved from the total number of potential suitable organ donors. A potential medically suitable donor is a person who was in good health, who is on life support in ICU, often after a fatal brain trauma. The target Conversion Rate for Ontario hospitals is 67%. The actual average rate in Ontario is 58%. Last year, Health Sciences North achieved a Conversion Rate of 92%, the highest in Ontario, meaning the families of 92% of medically suitable donors agreed to donate their loved one’s organs. Even for registered donors, families have the final say. In 2017 the Conversion Rate was 100%.
It is all about minimising missed opportunities. At Health Sciences North a dedicated organ donation coordinator approaches grieving families of potential organ donors with care. She introduces herself and determines whether the family is ready to talk about organ donation. Have they eaten? Slept? How long have they been at the hospital? Are they waiting for other relatives to arrive?
“Then, typically,” she said, “I would ask them to tell me about their loved one and we would have a conversation about the person that’s in that bed in the ICU.”
This traditional approach of urging people to be organ donors would be turned on its head in places that embrace presumed consent. In Nova Scotia, a law has now come into effect under which everyone is presumed to be a potential donor unless they actively opt out. Alberta, Quebec and Prince Edward Island are considering following suit.
In the meantime, until presumed consent is legislated in Ontario, Sault Area Hospital would do well to emulate Health Sciences North in Sudbury.