Sometimes they come to public attention: Alex Girard's parents in Massachusetts get a sympathy call from the White House. Lisa Conklin's neighbors in New Jersey hold an I Love Lisa Day. But for the most part, the people waiting for organ transplants do just that, they wait.
They wait -- this is the morally uncomfortably truth -- for someone young and healthy, someone who is a good match, to die and to die suddenly, even traumatically. Today 500 of them wait for livers, 480 for hearts, 200 for pancreases, 100 for both hearts and lungs.
It does not take much to imagine the complicated emotions of the family whose hope depends on another family's despair, or someone whose life depends on another's death. It doesn't take much to imagine the family of someone just declared dead.
But one of the most remarkable side effects of two decades of transplants can be seen in the changing attitudes of people toward donating organs. Chalk it up to the success stories of transplant patients, chalk it up to altruism if you prefer. We are much less likely to be chilled by the old taboos. We are more likely to think of transplanting a liver, heart, kidney, as a way to harvest some good out of death.
Today about one-quarter of Americans have signed one form of donor card or another. In the polls, 50 percent of Americans say they are willing to donate their organs, and 75 percent are willing to donate the organs of a family member.
Despite all this change, about 25,000 Americans suffer brain deaths every year, and only 2,500 become donors. On one side are the potential donors, on the other side the people who need organs, and in between there is a deadly gap.
In the past years, any number of policy makers have probed this gap, trying to figure out how to close it. Some favored a greater push for donor cards; others said that we need the kind of ''presumed consent'' laws that give doctors in France the right to harvest organs. But it turns out that the answer is much simpler: we just need to ask.
One of the most telling studies on this subject has shown that 70 percent of families that are asked to donate organs say yes. The reality is that not enough are asked. The understandable reluctance of hospitals to intrude on mourning, the difficulty doctors feel in changing roles, the inexperience of many in dealing with this delicate subject means that most families never get the chance to make the decision.
This simple and frustrating fact has provided the current push for ''required request'' laws. These laws require that someone in the hospital -- not necessarily a doctor -- talk to families about donation. Seven states so far, four within the past month alone, have passed such laws: California, New York, Oregon, Wisconsin, Kentucky, George and Maine. There are various versions of the bill in 10 or 15 other legislatures, two awaiting signature of governors.
Some doctors dislike this regulation, but as Arthur Caplan of The Hastings Center (which deals with questions of medical ethics) says, ''We've had 15 years of education, and it's not working.'' By contrast, in just these few months of ''required request'' in California, there has been a 50 percent increase in donations.
Bills such as these won't alone fill the gap. ''We want hospitals to learn how to ask,'' says Caplan. ''We don't want doctors to go in and say, 'According to New York state law 4925, we have to ask you about organ donation.' We want them to be sensitive.''
We also need a national computerized network for organ retrieval and distribution, so that the system will work smoothly and fairly. Such a network, and a program for helping hospitals learn to deal with families, are parts of a law passed nearly unanimously by Congress in 1984. The law, opposed by the White House, has yet to be effectively implemented.
Under even the best of systems, there will be people who wait, some who will die waiting. There will be others like 9-month-old Alex Girard who get off the waiting list and onto the operating table too late to survive.
But they should have a better chance, and so should those who feel compassion even in their most acute moment of mourning, and find comfort in saving a life with a death. At the very least, somebody should ask.