New idea - Honor organ donor's wishes, despite what family says

WASHINGTON -- Even if someone signs an organ donor card during life, in death it's almost always the family who decides whether to give away hearts, lungs, livers and kidneys to patients awaiting transplants.

That would change under a proposal being pushed by leaders in the field of organ procurement, who are frustrated by transplant waiting lists that grow each year. Under their approach, organs would be harvested from all who have signed documents, even if their families say no.

Public opinion consistently shows widespread support for organ donation, yet just half of families say yes to donating a loved one's organs when approached. The only appreciable increase in recent years has been among living donors who give one of their kidneys or a portion of liver.

The proposed new approach, being called "donor authorization," was agreed to at conference last month in Orlando, Fla., where more than 100 donation experts met to devise ways to increase donation rates.

"I strongly believe in an individual's right to donate. That right shouldn't be taken away because the family doesn't agree," said Dr. Robert Metzger, the medical director of the organ bank in Orlando, who helped organize the meeting.

Changes to the system have been tried before. In 1998, the government required hospitals that participate in Medicare to refer all potential donors to local organ banks. Organ donation jumped 6 percent the next year, but the donation rate has been flat since then.

In practical terms, donor authorization is a subtle but important change in how transplant coordinators deal with families.

In most of the country, transplant coordinators today tell the family of the person's wishes and ask relatives what they would like to do. Using donor authorization, a coordinator tells the family that the person wanted to be a donor and then explains how the process will work.

To make it work, states must change their laws to make clear that a donor card -- a driver's license, for instance -- is a legal authorization for donation. Federal law already recognizes a donor card as a legal document, but most states have not adopted corresponding laws.

Taking organs with consent only from the deceased is perfectly ethical, but it may cause problems when families object, says Dr. Arthur Caplan, a bioethicist at the University of Pennsylvania.

"If the family is putting up a stink, it's going to be very difficult to get doctors and nurses to go along," Caplan said.

Advocates also predict resistance among transplant coordinators, who work closely with families and may worry about upsetting those already in grief.

A former transplant coordinator, Peggy Schaeffer said she was initially opposed to anything that would go against a family's wishes.

"I was so concerned that the families not be hurt any more than the tragedies they were in," she said.

Schaeffer, of Richmond, Va., said she changed her mind, partly after her 21-year-old son died, and she found some comfort in donating his organs.

Still, she said, it will not be easy. "I don't think there's any way around the issue that there are going to be people who might be angry."

Even if families' consent is not needed, they must cooperate by providing the donor's medical and social history or the organs might not be able to be used.

This approach is being used in some states, and transplant officials there report few problems -- but also minimal increase in donation.

In Pittsburgh, where donor authorization has been the rule since 1995, just three families have objected, said Brian Broznick, director of the Center for Organ Recovery & Education.

But he said the organ donation rate has not risen significantly, partly because only 30 percent of all potential donors have had signed donor cards.

An additional challenge is getting round-the-clock access to the list of people who have agreed to donate. In many states, drivers license records are not available at night or on weekends. Police sometimes take the licenses of those involved in car accidents.

Many states are now developing such listings -- donor registries -- but often there are relatively few people listed. Federal investigators reported last year that registries alone had done little to improve donation rates. Also, people do not always die in their home state, so the registries have to be accessible elsewhere.

A panel convened by the Health and Human Services Department considered the idea of a national registry but concluded it would not be effective.

It will take time, Broznick said, to get more people to join the donor registry. He says people will be more likely to enroll if they know their wishes will be honored: "If you tell someone, 'If you sign a donor card it doesn't mean anything,' then why sign a donor card?"