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"A lot of people we talked to [for Annals of Internal Medicine] explained it in terms of cars and car parts," says Klassen. "If they were comfortable with the idea of organ donation, they would often talk about a car no longer functioning but having a good engine, and they would compare that to being able to take the heart or the kidney from their loved one, and that that organ, like their car, would work if it was placed in another person's body. We found that people who really couldn't handle the idea of organ donation would often describe the body as being more than the sum of its parts; that, 'We aren't cars -- you can't part us out!'"

The parts are in greater demand than ever. Overall, organ donations have increased, but rapid advances in transplant technique have created a growing gap between supply and demand. And ironically, as transplant organizations craft public education campaigns stressing the need for organs, the potential donor pool has been reduced -- by, among other things, successful public education campaigns. "The kinds of death that are traditionally necessary for organ donation really have decreased," says Klassen. "With air bags, with bicycle helmets and motorcycle helmets [and, one assumes, increased seatbelt use], the number of young people who die in motor-vehicle collisions has actually gone down. The number of viable organ donors is not necessarily as high as it might have been."

What can be done to narrow the gap? In 1986, Belgium boosted organ donation rates by implementing presumed consent, in which citizens are considered organ donors unless they declare otherwise. As of 1996, executed prisoners were the principle source of donor organs in the People's Republic of China. In a much milder vein, the state of Pennsylvania recently floated the idea of encouraging donations by giving donors $300 toward funeral expenses, but opponents fear it will be the first step toward the commodification of organs. The implicit conundrum here is that any concrete incentive is seen as the first step down the slippery slope of organ trade.

The U.S. transplant community has chosen to direct its greatest efforts toward shifting focus from the donor to the donor's family. It is a decision based on the idea that a significant percentage of the belief-vs.-action drop-off occurs simply because family members are unsure what the victim's wishes were.

"A lot of public education [in the past] had been based on the idea that organ donation was an individual decision and once an individual had documented their wishes, that would be sufficient," says Klassen. Unfortunately, simply signing your donor card isn't enough; organ procurement officials will ultimately defer to the decision of family members. Even if your family knows you are a donor, Klassen says circumstances can affect their decision. "No matter what you've decided ahead of time, the events of the death -- the events of the medical situation -- may make it very difficult. For example, it may take a long time for someone to clinically progress to a point of full brain death, and the family may feel that they simply cannot go through that long, drawn-out period."

On the other hand, if death comes suddenly, the family is faced with a different set of obstacles. "You've got a hundred things to think of," says Reg Green. "Under those conditions, to have to make a major decision, an irrevocable decision, one [the family] senses is fraught with a lot of complications, and do it quickly without being able to consult all the other members of the family, to have to think of all these things when you've not faced the issue before is just too much for most people, and they take the safe course. They say no."

"Two things have come to be recognized as being central to successful organ donation," says Klassen. "The first is to make the decision to donate; the second is to discuss that decision with important people in your life so that they've understood your reasons, so that, in a situation where you were not able to speak for yourself, they would be clear in carrying out what your wishes are."

To that end, the Coalition for Donation slogan is now twofold -- "Share your life. Share your decision" -- and the American Society of Transplant Surgeons has initiated the First Family Pledge to encourage discussion of the issue between family members.

"Signing the donor card is a solitary act," says Green. "Often your family never knew you signed it, or they've forgotten. The family pledge forces you to sit down with the rest of the family. Some families will have a very cursory discussion -- others will have an extended conversation, and possibly, in the end, some of them won't agree, and won't sign it. But those who do sign will have it down on paper." The pledge is not legally binding ("and if your household is anything like ours, you'll put it away and never be able to find it," chuckles Green) but the discussion it engenders can be invaluable when a family is faced with the death of one of its members. "You have to support each other afterwards as well," says Green, "which is another reason to bring the family in from the beginning."

"The Nicholas Effect" is written with a dignified passion. Green's narrative is moving, frank and fundamentally instructive. By the time Nicholas' organs and tissue resumed life in the bodies of seven Italians, his story had focused international attention on the need for organ donation. Reg Green continues to take time from home and business, writing and speaking to keep "The Nicholas Effect" in motion.

But at the end of the day, he is not a spokesman. He is simply a father mourning a son. "No joy is pure anymore," he writes, and he resists the idea that Nicholas "lives on" in the recipients' bodies. But in a recent telephone conversation, his firm voice was evidence that he draws some solace from the fact that in being taken, Nicholas was able to give. "When we looked at Nicholas that last day, it was quite clear that he wasn't a sleeping child anymore," said Green. "We'd have done anything we could to keep him alive, but we knew there was nothing we could do. But it was clear to both of us that although he had no future left, that future could be given to someone else."
salon.com | July 21, 1999

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