Transplant patients seek to share more than organs

Physicians know that patient privacy must be protected at all costs, but there is one area where increasing numbers of patients and families are sharing their personal information with strangers: organ donation.

No national figures are kept, but officials with organ procurement organizations across the country say they increasingly are being asked to facilitate meetings between transplant recipients and families of deceased organ donors. They also report that most of the meetings are beneficial and help the healing process on both sides of the transplant equation.

"It's just multiplied tremendously," said Maggie Coolican, a nurse and donor family services coordinator at LifeChoice Donor Services in Windsor, Conn. "I know we've had at least four times as many meetings as we had here 10 years ago."

Face-to-face meetings are still rare, equaling about one to five a year for most organ procurement organizations, but Pam Silvestri, public affairs director for the Dallas-based Southwest Transplant Alliance, said her group might take part in 30 to 50 such meetings a year -- double what they were experiencing 10 years ago.

Pam Albert, a nurse and director of donor family services for the Newton, Mass.-based New England Organ Bank, said keeping people apart was the result of antiquated thinking.

"It was felt that a meeting was more than either side could bear," she said. "I think sometimes in medicine we get paternalistic and think we always know what's best for patients."

The NEOB is one of the few agencies that keeps track of these meetings. From October 1993 to April 2003, Albert said, the NEOB has received 213 requests for donors and recipients to contact each other directly without the agency's facilitation. Some of these requests were for people wanting to write or call directly, but 92 of them were for face-to-face meetings, with 32 of those coming between 1993 and 1998 and 60 between 1998 and 2003.

Driven by donor families, recipients

Coolican, whose 6-year-old daughter's corneas and kidneys were donated when the daughter died of a brain hemorrhage, said new communication guidelines created by the National Donor Family Council are the result of 13 national organizations responding to what people wanted.

"It really was driven by the donor families and recipients themselves -- and not the professionals," she said.

Agencies facilitate the contact differently, but the basic policy is to initiate it through anonymous letters containing only first names and general information. Letters are given to the agency and then forwarded to recipients and donor families.

While facilitated meetings can be joyous, officials report that sometimes a transplant recipient will show up at someone's door without notice after reading the news of a traumatic death and deciding that his or her new organ came from that family.

"We've had people say, 'I know who my donor is,' and they're not correct," said Mark Sommerville, assistant director of the LifeCenter Organ Donor Network in Cincinnati. "We much prefer a recipient would work with the transplant center or OPO versus going through the newspaper obits."

Most initial meetings are private. ("It's not something you want to do on 'Oprah,' " Coolican said.) But several take place at organ donation-related events. Five or six meetings take place at California's annual ceremony honoring donor families, said Kate Andrews, California Transplant Donor Network marketing director.

This April, at a Walt Disney World Resort hotel, Chicago book publisher Bob Roen said he met the family of the 18-year-old whose heart he received two years ago. They decided to meet after finding out through e-mails that they would be in Florida at the same time. "It was kind of surreal," he said. "His mother wanted to feel the heart beat, and she stood there with her hand on my chest for a while."

Roen, 58, speaks at schools and universities sharing his story and that of his donor, hoping to inspire others to register as organ donors. He also recommends that physicians arrange to have a transplant recipient speak with patients within 48 hours of telling them they need a transplant.

"Doctors have to understand they can't just say, 'You need a heart transplant,' " Roen said. "I had visions of having tubes stuck in me for the rest of my life. The first time I wasn't scared anymore was when another transplant walked in to talk to me."