The bureaucracy barrier
What a heart-stopping example of how theoretically high-minded regulation can destroy real lives in practice: in Edmonton, an eight-month-old little girl named Naomi needs a liver transplant to save her life, but Alberta Health Services (AHS) grounded Naomi’s family’s efforts to find a suitable donor through media releases because AHS has a rule against anonymous living donors. Naomi is lucky. Although no one in her immediate family is a match to donate part of their liver to her, and although AHS won’t allow a selfless Good Samaritan to save the sick baby’s life, good news has come.
The same day that the Edmonton Journal reported the absurd reality that asking bighearted Edmontonians to step up to help Naomi was a no-go under AHS policies, the paper published another story reporting that a friend of Naomi’s family, who had initially been ruled out as a match, was now thought to be potentially suitable as a donor. “It’s not 100 per cent,” Naomi’s dad Curtis Carlow told the Journal. “Naomi has to grow.” (The blood vessels in the friend’s liver are larger than Natalie’s.)
But at least a potential happy ending now seems to be in sight for the young child — whose condition, biliary atresia, leaves untreated infants unlikely to live beyond the age of two — without the regulatory ban on anonymous living donors being the one thing that stands between her and a full life.
Still, it’s worth considering how great the damage would have been if not for this fine stroke of luck of a family friend apparently being a match after all. Should Naomi’s parents really have been consigned to complete helplessness when it came to finding an altruistic living donation for their daughter?
Patients in Ontario legally receive transplants from anonymous living donors, and the sky has not fallen there, nor have shady organ markets sprung up on every corner.
Rather, lives are saved by people who want to give the most powerfully transformative gift imaginable to a fellow human being, and the very long waiting lists for cadaver donors get a little bit shorter.
Coupled with the innate good such donations do is the fact that all Canadians have a fundamental constitutional right to make free choices about their own bodies.
The Supreme Court has now made it clear in cases on everything from abortion to assisted dying that the government cannot block a patient’s personal medical choices about how he will minimize physical harm or psychological harm to himself.
If our constitutionally protected autonomy is so strong that it includes the right to have a physician help us end our life, then surely it also must include the right to try to save our own life by seeking a consensual voluntary donation — by essentially asking for help; and conversely the right to choose to use a part of our body to save another’s life with a relatively low-risk procedure.
(In Ontario, anonymous living donors are carefully screened to make sure they
A little girl is very sick in Alberta … but the health system there forbids the kind of organ donation that could save her life
understand and are psychologically and medically prepared for the organ donation, which helps to ensure the lowrisk status of the surgery.)
One can have a great debate about the law and ethics of voluntary living organ donations, but Naomi’s case is a good reminder of what we should ultimately be asking ourselves when developing, or accepting, regulatory policy on the subject.
Are we going to be able to live with ourselves if a real-life child is dying, and the only thing standing between her and a voluntarily donated organ that would save her life is a regulation based on an abundance of caution and a queasiness about the idea of organs as commodities?
I don’t think most of us will. And we shouldn’t have to.