Bill Greisling waited three years for someone to help him breathe.
Finally, this past May, hospital workers called the 62-year-old father of six and grandfather of 15, to let him know that help had arrived. A high school student had died in a car crash on his 16th birthday and Greisling would receive his left lung.
"I can't tell you how grateful I am," said Greisling, who, before the surgery couldn't even walk to his mailbox without running out of breath due to idiopathic pulmonary fibrosis, a progressive disease of the lung. "You start looking at life very differently — all you want to do is help others."
According to a Gallup poll, 83 percent of Americans understand the benefits of organ donation and approve of the practice but only 28 percent have granted written consent to release their organs if they die. Since 1995, more than 45,000 people have died waiting for an organ donor.
Avoiding the Question
Some say the problem lies in a reluctance to make what can be a very uncomfortable decision. They say a new opt-out system, which would assume people are donors unless they specify otherwise, could dramatically increase the number of donors and save lives. A similar example lies in the do-not-call telemarketing system, where it is assumed telemarketers may call people at home unless they add their names to a do-not-call list.
But because releasing your organs to medicine after death can be such a profound decision, critics say adopting a similar opt-out system for organ donation would also introduce all kinds of ethical land mines.
"It's a really emotionally hard decision to make — you have to think about your own demise," said Eric Johnson, a social scientist at Columbia University. "It's easier to not think about it at all."
Numbers from some European countries show that forcing people to confront the decision can make a big difference.
In several countries, including Austria, Belgium, France, Hungary, Poland, Portugal and Sweden, authorities assume everyone is willing to be a donor — with the approval of family after death — unless they say otherwise in written form. In those countries, 85 percent to 99 percent of people are on paper as willing donors and actual donations are higher by about 56 percent.
In Germany, Denmark, the Netherlands and the United Kingdom, where it is assumed people are not willing donors unless they sign up to be, the consent rates range from just over 4 percent in Denmark to 27 percent in the Netherlands.
Surveys by Johnson and his colleague Daniel Goldstein suggest a change in how people sign up could make a difference in this country as well.
Rephrase the Question?
The pair interviewed three groups of people. Members of the first group were told they had just moved to a new state where it was assumed they would be an organ donor. They were given the choice to confirm or change that status. Another group was told the same except it was assumed they were not donors unless they specified they wanted to be. The third group was told to simply choose whether or not to become organ donors — with no prior default.
Among those who had to opt out from being a donor, 82 percent volunteered to be donors. For those who had to change their default to opt in and become a donor, only 42 percent signed up. And 79 percent of those who made the choice without any prior default said they would be donors.
"There's no question that by setting a default you are setting policy," said Johnson, who published the results in a recent issue of the journal Science. "There's no such thing as a neutral default on the decision to donate."
Sheldon Zink, director of the Program for Transplant Policy and Ethics at the University of Pennsylvania in Philadelphia, agrees that changing the current sign-up system could help boost donor numbers, but she says making these changes is no simple task and needs to be done with care.
"Right now we're all over the board in terms of how people can sign up," she said. "The first thing we need to do is set up a national system that is consistent in every state and then we have to make sure everyone is making an informed decision."
Even though most states enlist donor volunteers when they sign up for their driver's licenses, few states share the same policies. In California, for example, a red dot on the back of a driver's license can indicate a person's willingness to donate their organs. In Virginia, people are asked to record a yes, no or undecided when it comes to donating their organs. And in 19 other states, people are not prompted to make any decision when signing up to receive their driver's licenses.
The nature of a donor's agreement also varies by state. In some, medical workers must also receive a go ahead from family members while in others, all that's needed is a person's explicit consent before their death.
As a Catholic, the Rev. Robert Finn has his own concerns. He points out that according to Catholic doctrine, organ donation after death "is a noble and meritorious act and is to be encouraged." But he argues people must be vigilant about when they declare a person is indeed dead.
Most organ donations take place after a patient has shown irreversible loss of all brain activity. But in some 2 percent of cases, the call is made after life support is taken away and the heart stops beating for a given period of time (usually five minutes).
"We don't think there is sufficient assurance that the person is dead," said Finn, who is editor of the St. Louis Review, the newspaper of the Roman Catholic Archdiocese of St. Louis.
These are the kinds of thorny questions that Zink thinks it's time Americans tackled on a national level. Just as President Bush's policy on stem-cell research has launched a national discussion on the issue, a movement to create a standard system could prompt more Americans to start thinking about organ donation and how donors should be enlisted.
Greisling, who is now walking, doing errands and bowling without the aid of oxygen, says he's hopeful that when people take the time to think carefully about organ donation, most will be willing to volunteer. After receiving his new lung, Greisling immediately wrote the family of the donor to thank them. He recently got a reply from the mother.
"She apologized for not writing me back sooner, but every time she sat down to write she'd cry," he said. "She said her son, Randy, was a wrestler, a popular student and a prince. She was sure this is the kind of thing he'd want to do."