Sharing your life

Why do people favor organ donation but balk at the final OK?

Published July 21, 1999 4:00PM (EDT)

When highway robbers killed Reg and Maggie Green's 8-year-old son during a family vacation in Italy in 1994, the couple found themselves whisked from a holiday outing to the waiting room of a Messina hospital. A neurosurgeon informed them that their son, Nicholas, was brain-dead. Faced with a decision every parent dreads, the Greens were about to set in motion events that would become known worldwide as the Nicholas effect. In his recent book of the same name, Reg describes the moment:

Then one of us -- we don't remember which, though, knowing her, I'd guess Maggie -- looked at the other and asked, "Now that he's gone, shouldn't we give his organs?"

"Yes," said the other and that's all there was to it. We told the doctors and signed the forms and left. It was the least difficult major decision either of us had to make: The boy we knew was not in that body anymore.

On the face of it, organ donation seems so proper -- so right -- that we need only be reminded of it the way we might remind a child to share his M&Ms. Even the tag line on the Coalition for Donation Web site sounds like a mother's gentle admonition: "Remember, share your life."

But beneath the skin of sunny catch phrases is a turbid soup of moral, ethical, psychological and spiritual unease. According to Reg Green, 90 percent of Americans favor organ donation -- but given the opportunity, only 30 percent actually follow through. The Coalition on Donation puts the number closer to 50 percent, but the drop-off is still steep. Something is holding us back.

For some people, organ sharing violates sacred beliefs. Romany Gypsies have traditionally believed that after death, the soul retraces its steps, and because the soul maintains its physical shape, the body must remain intact; certain Native American tribes hold similar beliefs. In Japan, Shinto worshipers regard the dead body as impure and dangerous, and regard injury to the body as a serious crime. Still, nearly all the major religions of the world endorse organ donation. The drop-off between belief and action occurs elsewhere, in that place where we are forced to confront issues of bodily integrity and human solidarity. This confrontation originates with the individual, but often extends to family members left behind to make organ donation decisions.

"There are, I think, some deep feelings of revulsion about organ donation," says Reg Green. "I quote a man in the book whose wife died. When his daughter suggested that they donate her organs, he said, 'Hasn't your mother suffered enough?'"

I have a friend who has worked as an emergency room nurse for years. She is a firm believer in organ and tissue donation, and has been actively involved in events promoting donor awareness. And yet, she tells me, she could never allow the harvest of her children's eyes. "Those eyes show me their souls," she says. "I cannot think of them without their eyes."

Another experienced nurse said the same thing about donating her own eyes. "I know that the body is not going to know a thing, but the idea of scooping the eyes out just seems so ugly -- it makes me uneasy. I can't agree to it." When her grandfather accidentally severed his finger, he had it placed in his burial plot so that "all his parts" would be in one place when he died. As nurses actively involved in organ harvest, they may hold contradictory positions, but those positions come from powerful places.

"I think a lot of people have beliefs that I would term metaphysical," says Ann Klassen, Ph.D., an assistant professor at Johns Hopkins School of Public Health who has written about organ donation refusal for the Annals of Internal Medicine. "Sometimes they're formalized in a sense of reincarnation, or the connection between someone's spirit or the spiritual nature of someone's life or their physical body -- those feelings may come out at a time like a request for donation, but in fact these feelings may not be clearly a part of someone's organized religious experience."

"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."

By Mike Perry

Mike Perry is a registered nurse who has written for Esquire, Newsweek and the New York Times Magazine. He lives in Wisconsin.

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