March 3, 2016
By Shilpa Ravella
A patient of mine, let’s call him David, was a disciplined man. He never drank excessively or smoked, his meals were balanced and he jogged around his neighborhood every day to stay active. He took good care of his body and expected it to function well in return. However, in 2010, doctors detected a giant tumor in his abdominal cavity that encased vital organs, including his intestines and liver. He was unable to eat by mouth and became weak, requiring liquid feeds to be pumped into his veins through an IV. For him to live, several internal organs would need to be replaced. David had never heard of anyone surviving such an ordeal, and prepared to leave his family. Meanwhile, he was put on the wait list for a multi-organ transplant. He marked his son’s graduation on his calendar, but didn’t expect to attend.
Five years later, David regularly sees me in clinic. He received a new intestine, liver and pancreas. For the first time in years, he enjoys food again. He wasn’t as likely to receive those organs as an American, however, because our policy doesn’t protect those who depend on organ donation to survive.
The U.S. performs more organ transplants than any other country. Since the first successful human transplant—a kidney—was performed in 1954, scientific advances have led to intestinal transplants, multi-organ transplants, facial transplants and even the first uterine transplant in November of 2015. This month, doctors at John Hopkins University announced preparation for the first transplant between HIV patients. Despite these successes, around eighteen Americans die every day while waiting for an organ, and every ten minutes another name is added to the waiting list. One organ donor can save eight lives and improve the lives of up to fifty people. The U.S. donation rate is 4th worldwide but still fails to meet the demand for organs. Studies show the majority of Americans want to donate, but only a fraction of these people are registered to donate. The U.S. has an opt-in policy, which requires individuals to sign up to donate. An opt-out policy, known as “presumed consent,” assumes people want to donate unless they specify otherwise. In December 2015, Wales, hoping to improve organ donation rates, became the first UK nation to join the twenty-four European countries that already have opt-out transplant policies. Should the U.S. follow suit?
The influence of policy on organ donation rates has been heavily debated. In countries like Spain, Belgium, Austria and Singapore, donation rates significantly increased after opt-out policies were put in place. A 2009 systematic review concluded that opt-out policies increase donation rates, though they are unlikely to be the only factor. Presumed consent organ donation is now the recommended model by the World Health Organization.
Yet, upon closer examination, opt-out policies are not a panacea. Many countries with these policies, such as Sweden and Greece, have lower rates of organ donation than the U.S. Spain, with the highest rates of organ donation in the world, saw an increase in donation not when it instituted presumed consent in 1979 but a decade later, when it remade its transplant infrastructure and placed transplant coordinators at every hospital. Despite the policy differences between Spain and the U.S., both countries defer to families of the deceased for the final word on whether an organ is donated. This is the case in many, though not all, countries with presumed consent. Regardless of the policy chosen, improving family refusal rates is key. This means building trust between families and hospitals, improving public perception of donation and getting more people to document their donation preferences
Organ donation is socially desirable. Inadvertent death can lead to better health and new life for others. But in a country that holds individual autonomy paramount, most do not want to be told that something is being “presumed” about “consent.” Aside from the ethical debate, semantics can play a role. Lawmakers in at least seven states, including New York, Delaware and Colorado, have looked at presumed consent bills from 2011 to 2015 but attempts to change policy have failed.
One alternative to both opt-in and opt-out policies is mandated choice, or compelling individuals to record their preference. In Illinois, where I used to live, I was asked if I wanted to become an organ donor when I renewed my driver’s license. This practice was initiated in 2006 and Illinois now has a donor share of 55 percent, which is higher than the national average according to Donate Life America. Illinois also simplified the registration process and made organ donor registration legally binding. In 2009, Steve Jobs underwent a liver transplant. Afterwards, he pressed California state legislators to consider mandated choice, which was enacted in California in 2011.
Most Americans want to donate. Our attention should be focused on making it easier for them to do so with simple changes that can help overcome individual inertia and save lives. An opt-in versus opt-out policy might matter less than improving transplant infrastructure and building public trust. After his transplant, Jobs said, “I wouldn’t be here without such generosity.” David feels the same way. “I was unlucky for awhile…and then I got lucky again,” he said. Not every American awaiting donation is as fortunate, but a change in policy might help make it so. (from The Hill)