The two widows of the only Americans known to have died as a result of donating a portion of their liver for transplantation are urging that new procedures be put in place to better inform potential donors of the risk.

At present, potential liver donors have no way to accurately assess the risk of death or serious complications that they face in having this highly challenging surgery because a national registry that would track all living liver donor outcomes does not exist.

"My husband was at the mercy of what his surgeons chose to tell him," said Rhonda Boone, wife of 41-year-old Danny Boone, who died three weeks after donating part of his liver to his brother in 1999 at the University of North Carolina Liver Transplant Program at Chapel Hill.

Vickie Hurewitz, whose 57-year-old husband Mike died three days after donating part of his liver to his brother in January at Mount Sinai Hospital in New York, said "once Mike found he was a match for his brother, he didn't ask any questions at all. He told me he felt he didn't have any choice."

A number of bioethicists suggest that the strong motivation of donors like Boone and Hurewitz, coupled with a lack of accurate information about complications such as embolisms, bile leaks and damage to nearby organs, often makes a mockery of the idea of "informed consent."

Surgeons privately also suggest that in the absence of any reporting requirement, additional deaths many have gone unreported in the last few years among the more than 700 liver donors in the United States -- in addition to the three deaths reported to have occurred in Europe.

They also note that there currently is no process for tracking donor morbidity -- complications suffered by the donor somewhere between 10 and 40 percent of the time -- as a way of better informing prospective donors of the risks. One donor at Georgetown University Medical Center, for example, reportedly experienced liver failure, and wound up needing a liver transplant himself.

Hurewitz and Boone also echoed a complaint heard from many living donors -- of kidneys as well as livers -- that members of the transplant team seemed far more interested post-surgery in the recipient than in the donor.

"My impression of these people is . . . (all) they care about was they got 60 percent of his liver out of him," said Hurewitz. Boone and Hurewitz are planning to meet next month to talk about ways of better protecting other potential healthy liver donors.

"There needs to be a national debate on it ... we're still debating abortion, we're debating stem cell research. How the hell are we just letting this procedure go? '' asked Hurewitz. "It's not regulated by anybody, anywhere. There's no national standards.''

Other sources: Albany Times-Union