What if everyone were a donor?
Most Americans volunteer to become organ donors by affixing a sticker to their driver’s license. But that method isn’t producing enough donors to meet the nation’s profound need. More than 89,000 Americans are awaiting organ transplants -- surgeries that have become highly successful at prolonging the lives of people who might otherwise die -- but only about 20,000 organs became available last year.
Even when an individual’s driver’s license indicates a willingness to donate, some families override those wishes at the time of death.
That’s why some people suggest it’s time for the United States to do what more than a dozen other countries do: assume people want to donate unless they specify otherwise, by adding their names to a government-operated registry.
Known as presumed consent, some ethicists and organ transplant activists are advocating for the concept even though they acknowledge it’s controversial. It’s uncertain whether such a system would ever be endorsed in this country, as it has in many European countries.
“The driving factor behind presumed consent is the fact that the waiting list continues to rise at a rapid rate,” said Richard Darling, a Palm Desert dentist and three-time liver transplant recipient who is active in transplantation issues. “As we get close to 100,000 people awaiting donation, that’s going to open people’s eyes.”
In June, the American Medical Assn. adopted a policy on organ donation that encourages pilot studies investigating the effectiveness of presumed consent. The California Medical Assn.'s ethics committee will also discuss presumed consent later this year.
The Advisory Committee on Organ Transplantation, a federal government panel, and the United Network for Organ Sharing, the agency that oversees organ procurement and distribution nationwide, are also discussing the idea of presumed consent.
“It’s one additional avenue to consider,” said Margaret Allee, chairman of the Organ Procurement and Transplantation Network-UNOS ethics committee.
Presumed consent is among several ideas that have been proposed for increasing organ donation. Other suggestions include some form of financial compensation to families, such as payment for funeral expenses or monetary rewards to families who donate.
Other potential solutions include expanding the criteria under which organs are considered suitable for donation, such as organs from donors who are elderly, obese or have some illness. Organs now are usually taken from healthy, young donors who are brain dead but on life support.
Yet another option is to obtain organs from donors whose hearts have stopped but whose organs could still be healthy enough to use if removed quickly. Currently, only organs from brain-dead donors are removed to preserve the quality of the organs and increase the chances of a successful transplant.
None of these alternatives to increase donation is without controversy, experts note. Presumed consent, however, has been used in other countries such as France, Austria, Belgium, Denmark, Finland, Italy, Norway and Sweden. A 2004 study by Harvard University and University of Chicago researchers found the system has a large and positive effect on donation in other countries.
But would it work in the United States? Presumed consent would require a far-reaching public education program informing people how they can opt out of organ donation, experts say.
James Justice thinks organ donation is a great way to save lives; for years he has signed on as a donor when updating his driver’s license.
But the Anaheim man said he was uncomfortable with the idea of presumed consent because of the need to join a do-not-donate list.
“People don’t even make the effort to go vote here,” said the real estate investor, 59, after stopping for coffee at a neighborhood store one recent morning. “People would have their organs taken who just didn’t bother to sign up but who really don’t want to do it.”
Wesley J. Smith, a senior fellow at the Discovery Institute, a public policy think tank in Seattle, sees some potential for the presumed consent idea to backfire in a country where people place strong emphasis on individual rights and where there is some mistrust of the medical system.
“If people ever come to believe that the issue of getting the organ becomes more important than the patient and the family, I worry it will undercut what is already a pretty thin trust of the whole process,” Smith said. “I think we’re much better off continuing to educate people and taking steps to ensure that organ procurement will remain ethical.”
Even in countries with presumed consent, procurement officials hesitate to go against the wishes of the family, said Arthur Caplan, chairman of the department of medical ethics at the University of Pennsylvania School of Medicine. “In Europe, they may say we’re going to presume this, but if a family said we’re not comfortable with this, that gets a lot of attention,” he said. “Death turns out to be a family matter.”
Caplan said he favored presumed consent. But instead of a change in laws, a more palatable alternative may be to discuss donation with families of potential donors in a different way. Many organ procurement officers approach families objectively, supporting whatever decision the family makes. But procurement officers who assume families will donate are more likely to be successful, he said.
Proponents of presumed consent say the only sure way to increase organ donation is to remove the burden of signing up. More than 90% of Americans say they support organ donation and more than half say they would be willing to donate their own organs and tissue. Many people, however, never communicate their wishes.
“Presumed consent is actually a more ethical way of providing organ donation because it recognizes the desire of the majority of people to donate their organs ... whereas the present system results in those wishes being denied,” said Dr. Joseph Beezy, the Panorama City emergency room physician who has lobbied the California Medical Assn. to explore the concept.
A national nonprofit group, the Presumed Consent Foundation, was formed in 2001 to raise awareness and press for studies. The group is targeting California, New York and Texas in an effort to find a legislator to carry a bill authorizing a pilot study.
“This would provide the best method of alleviating the suffering we have in this country,” said David Courtney, vice president of the Westerlo, N.Y.-based organization. “We’ve spent millions on education and awareness and we haven’t seen any huge improvements. We simply have to change the way we’re doing things.”