For Organ Donation, Intent and Reality Don't Align

SATURDAY Sept. 12, 2009 -- Though Americans by and large say they support the idea of donating some or all of their organs after death to save others' lives, reality presents a different picture.

Just 38 percent of licensed drivers in the United States are registered as organ and tissue donors, according to a report this year by Donate Life America, a national alliance of organ donor groups. And most waiting lists for organ transplants remain long.

The gap between good intentions and reality is distressing, say those who run organ donor programs. "Most Americans do support organ donation," said Kris Patterson, a spokeswoman for the Donor Network of Arizona. But follow-through? That's lacking, she and others said.

In recent years, organ donor organizations have stepped up outreach efforts to raise awareness and increase the number of people who donate, Patterson said. But there's clearly a long road ahead.

One person's decision to donate organs can save eight lives, and tissue donation can help 50 people, according to the U.S. Department of Health and Human Services, which maintains an organ donor information Web site.

"As the waiting list gets longer, the wait time [for a transplant] grows longer as well," said Charles Alexander, chief executive of the Living Legacy Foundation of Maryland, an organ donor group, and the incoming vice president of the Organ Procurement and Transplantation Network, a private nonprofit organization that, by act of Congress, maintains the national waiting list for transplants. It's administered by the United Network for Organ Sharing, known as UNOS.

As of noon, Sept. 11, there were 103,497 people in the United States waiting for a transplant. In the first six months of this year, 7,250 people donated organs, enabling 14,191 transplants, according to UNOS.

Many people cite lack of time as the reason they have not acted on their desire to be a donor. Others say they intend to get to it soon, Patterson said.

Once they do decide to donate, they might not know how to go about it. Patterson said the federal government's Web site -- OrganDonor.gov -- is a good source of help because it offers state-by-state guidance.

"Each state is different," Patterson said. "Each state has a different organ procurement organization, and some states have more than one." Once signed up, donors should double-check their status if they move to another state, she said.

Some potential donors believe they are too old or too sick, Alexander said. But his advice is to sign up anyway. Whether organs and tissues are acceptable for donation cannot be determined until after death anyway, he explained.

Also, some people might want to donate one body part or tissue but not others and so they delay a decision or decide not to donate. But Alexander stressed that people "can choose what to donate."

Once potential donors are registered, they should tell friends and family of the decision, both experts said. Many donors do not, they said, and when these people die, their loved ones sometimes resist the idea because they aren't sure that's what the person truly wanted.

Stepping up outreach efforts, though, is helping some, Patterson said. Her organization, for instance, sponsored a challenge at Arizona universities earlier this year, resulting in more than 500 college students deciding to become donors.

Donor organizations also have raised their profile, she said, by handing out fact sheets and brochures about organ donation and donor programs at health fairs and other community events. And any time word gets out about the inspirational real-life stories linking a donor's family and a recipient's family, non-donors are nudged to think about donating and act on it, Patterson said.

Potential donors often tell organ donation officials that they have a sense of helping others by donating organs for use after their death. And the families of deceased donors say the act can help them deal with the loss, Patterson said.

In a time of grief, they tell her, the idea of their loved one's organ living on is a great comfort.

Patterson's donor network allows donor families and recipients to meet, if both parties agree. She recalls a woman who lost her son when he was just 17 and who then met the recipient who received his heart.

"They are friends now," Patterson said.

The mother and the recipient have dinner together from time to time, she said, and "when he comes to the door, she said she loves to hug him because she can hear her son's heart beating."

More information

The U.S. Department of Health and Human Services has more on organ donation.

Posted: September 2009


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