Rethinking Mandated
Choice

Steve Libowitz
Editor

"It is alright for them to resolve it as they need to because they're the ones who will have to live with it," she says.

But some advocates of organ and tissue donation are convinced that there would be substantially more donations if the individual's donor choice were enforced rather than the current custom, which allows the family to refuse organ donation at the time of their next of kin's death.

That's the impetus behind the mandated choice initiative, which some organ donation proponents would like to see passed into law nationwide. Its premise is simple: All competent adults in the country would have to register their decision about becoming an organ donor in some official manner, whether with the Department of Motor Vehicles--which people can already do voluntarily in many states, including Maryland--or, for example, on their income tax forms.

A resulting national data base with donor information would allow hospital-based personnel to quickly access donor information. If the deceased's record shows her or him to have chosen to be a donor, the family would have no say in the matter.

Proponents of mandated choice say such a procedure would have the added benefit of relieving the grieving family from having to make such a difficult decision at such an emotional time.

But Klassen, an instructor in health policy and management at the School of Public Health, disagrees. And her experience indicates that families must remain an integral part of the decision-making process, even if it means fewer donations.

"The unfortunate reality of cadaveric organ donation is that it is the family, not the deceased patient, who comes home from the hospital, talks to their friends, neighbors and community about their experience at the hospital and shapes public opinion about organ donation among those they know. Can the transplantation community afford to go against the wishes of a family for its own apparent gain, even if it is legally entitled to?" Klassen writes in the current issue of the Annals of Internal Medicine.

Proponents of mandated choice claim that families would be relieved to be removed from the decision-making process. But Klassen has found little evidence to support this.

"Studies pretty consistently show that families consent to organ donation about 50 percent of the time when asked," Klassen says. "If they know of their family member's preference, they have usually already taken it into consideration."

The donation effort has been aided somewhat since the implementation, starting in the mid-1980s, of required request laws, which obligate a designated hospital-based official--either the attending physician or an organ procurement specialist--to ask every appropriate family for an organ donation. But it has not come close to resolving the problem of too much demand and not enough supply.

Organ donation is only an option in 2 percent of all hospital-based deaths in the United States. From 1988 to 1993, the number of cadaveric donors increased 19 percent, from 4,083 to 4,844. In the same period, the number of people registered as needing a donated organ increased 109 percent, from 16,026 to 33,496.

Organ procurement advocates are growing impatient with the increasing gap between organ donors and patients waiting anxiously for organ transplants. And there is an even more aggressive plan on the table: presumed request, which would make every competent adult an organ/tissue donor unless he or she officially registered otherwise.

"There is tremendous pressure in this country to resolve the waiting list issue," Klassen says. "There's a lot of strategizing going on, and mandated choice is currently among the most prominent ideas. But even if mandated choice is legislated and it doubled the number of organ donations, there would still be a lot of patients on the waiting list. "

And there is no guarantee that mandated choice works as proponents hope. Virginia is one of only two states that has implemented mandated choice legislation. Of the 1 million people asked to declare a preference, 31 percent registered as donors, 45 percent registered as non-donors and 24 percent were undecided.

Other initiatives continue to focus on getting more donors through professional, individual and family education efforts.

The national advocacy groups, such as the Coalition on Organ Donation, try to keep the idea of choosing to be an organ donor and family discussions in the public arena. They are running a national advertising campaign with the slogan "Share your life, Share your decision." They also have stepped up professional education at the point of required request, which is most often the hospital trauma or critical care setting.

Klassen, though, remains convinced that the best strategy for increasing organ donations begins with understanding why families say no when faced with the decision.

"Many people believe in whole body burial, for either personal or spiritual or metaphysical reasons," she says. "Others take the social/political position that the cost of transplants is too high and we shouldn't be doing so many of them. And some just aren't ready to say yes when asked."

Still, Klassen maintains, organ procurement efforts must be aimed at the family.

"The relationship with the next of kin is a critical one and must be nurtured rather than ignored," she says. "Forcing people to commit to a specific end-of-life decision is coercive and shortsighted. It leaves the family with no options for considering the donation in light of the circumstances of death and perhaps agreeing to donate. I don't think it will win any new converts to organ donation, and it may alienate those who are neutral."