Wanting and Waiting

On any given day, more than 2,500 people in Southern California are awaiting a telephone call informing them that a donor has been found and a lifesaving transplant surgery can take place.

For many, that call never comes.

And one of the reasons has to do with another sad statistic: About half of families approached for organ donation say no.

The problem of organ donor refusal isn’t unique to this area. The national rate of refusal also hovers around 50%.

But after several years of stagnation in organ donation, health experts are looking to new sources to reverse the trend.

Who they are targeting may surprise you: The Southern California Organ Procurement Center has launched a program in schools to inform kids, grades six through 12, about the issue.

The goal is not to sign up donors; students are never even asked how they feel about donation. Instead, the program aims to educate students so they can form their own attitudes about the issue based on the facts.

Ed Rodevich, math and science coordinator for the Orange County Department of Education, is arranging workshops on the topic for Orange County teachers and administrators. “This is an educational program that has lots of implications, and we wanted to make sure we allowed them to have the opportunity to learn about it,” he says.

Rodevich said he heard about the program when he attended a statewide conference of science educators, but it didn’t hit home until his 17-year-old daughter decided to get a driver’s license.

Her license arrived with the familiar pink card on which she was to declare whether she wanted to donate her organs after death. “And she said, ‘What about this, Dad? What does it mean?’ And I thought, ‘She really doesn’t know.’ ”

Rodevich’s experience is typical, says Gloria Garcia Bohrer, who created the student education program for the Southern California Organ Procurement Center.

Usually the first time kids hear about organ donation is when they apply for their first driver’s license, and “it occurred to me that it was very important that they have a lot of good information to make that decision,” Bohrer says.

The lack of understanding about organ donation and transplantation, it appears, is contributing to the low donor rate among Americans, says Bohrer, a former teacher who was hired by a San Diego transplant center five years ago to increase awareness in the community. About 12,000 to 15,000 potential donor organs are available each year, but only about one-third of those are transplanted.

Initially, Bohrer says, she was puzzled that so many people refused to donate at their relative’s time of death when national surveys show 85% of Americans approve of donation and transplantation.

Surveys show people often refuse donation at the time of death for several reasons, including:

* They don’t understand or trust that the people most in need will receive the organs.

* They don’t know what the deceased would have wanted regarding donation because it was never discussed.

* They don’t understand that brain death, the medical condition under which most donation becomes feasible, is irreversible and that the patient cannot survive.

* They don’t know if their religion allows donation (almost all do).

* They fear the body will be altered in a way that will prevent viewing at a memorial service (it won’t).

“I felt we were always operating in a crisis mode,” Bohrer says. “There was a lack of understanding of what transplant was and why there was this need. But instead of doing that [education] at the lowest point in a person’s life--when they had never thought about this before--I thought, why not go to schools and talk to kids about it? If you want to make a difference you have to bring in young people. They are the next generation. If you don’t train them today, you will continue to work in this crisis mode.”

Using her enthusiasm, skills as an educator and some grant money, Bohrer created a curriculum for students in grades six through 12. She was eventually hired by the Southern California Organ Procurement Center and has expanded the program, called Discoveries.

A videotape geared to adolescents was recently created to augment the curriculum, and teacher training and instructional materials are also available to free Bohrer from having to do all the teaching. Bohrer, usually taking a transplant recipient along to speak, has visited schools in Los Angeles, Riverside, San Bernardino, San Diego and Kern counties.

So far she has addressed only college students in Orange County. In Febrary, she spoke at Cal State Fullerton to students interested in medical careers and at Chapman University in Orange to students enrolled in a criminal justice class titled “Death and the Law.”

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The Chapman class is taught by Jacque Berndt, manager of coroner’s investigations for the Orange County Sheriff’s Department. She was sufficiently impressed to invite Bohrer to address her investigators, who often deal with organ transplant issues. (In some cases, the coroner must approve before organs are donated.)

“Her video has people who are recipients talk about what it was like to be diagnosed with a fatal condition and what life was like afterward,” Berndt says. “It has a lot of impact on you as far as the importance of your job. Instead of dealing with death all the time the way we do, it shows how you can play a part helping someone to stay alive.”

College students and professionals, however, are not Bohrer’s main target. Nor are the elementary school pupils, who are too young to deal with issue of death.

She aims at junior high and high school students, who she says are uninhibited and very interested in the technical, ethical and financial aspects of organ transplantation.

“They are interested in the surgical aspect. They are very interested in asking the transplant recipient how their lives changed. And, one of the keys for them is the fairness of the system,” she says.

Students don’t accept organ donation wholesale without first challenging Bohrer with tough questions. At a recent talk to a science honors class at Westlake High School, students were particularly concerned about whether the system is fair.

“Can someone with HIV or cancer get an organ?” one student asked.

No, Bohrer explained, because organs are scarce, they are allocated to people with a reasonable chance of survival.

The students also heard a short talk from David Avant, 23, of Lancaster, who underwent a double lung transplant two years ago because cystic fibrosis had damaged his lungs to the point where he could barely breathe on his own. Avant’s parents each donated a lobe to their son.

“I have no restrictions now, other than taking my medication,” Avant said.

A student asked if he has any sudden new personality changes since receiving organs from his parents. He said he now craves chili.

By the end of the class, Bohrer said: “I find their reaction is typically, ‘Why don’t people donate?’ If you present the case, young people don’t understand why people wouldn’t donate. It’s so shocking to them.”

While few of these students will be candidates for organ donation in the near future, educating them now will translate to more donors eventually, says Martha Anderson, vice president of donor services for the Musculoskeletal Transplant Foundation, a bone and tissue bank in New Jersey. The foundation contributed a grant to Bohrer to develop Discoveries.

“Clearly, educating young people is the way to go,” Anderson says. “Kids are the perfect audience. They are open to learning new things. And, if they are teens and getting their driver’s licenses, the opportunity to become a donor is there.”

Discoveries may also prompt families to discuss donation, says Mary Ann Wirtz, a spokeswoman for UNOS.

“If the next-of-kin isn’t sure what the [deceased] loved one wanted, they often say no,” she says. “The reason why Discoveries will, ultimately, increase donation is kids will open up the discussion around the dinner table and get families to talk about it.”

Kids might also learn about donation through a new public service campaign from the Coalition on Donation featuring basketball superstar Michael Jordan.

“We’ve always felt we needed a really recognizable person to support this issue,” Bohrer says. “And Michael Jordan is unique in that he hasn’t been a transplant recipient,” unlike previous spokesmen such as actor Larry Hagman and singer David Crosby, both of whom received liver transplants.

Organ procurement officials recognize that they must explore new tactics to increase donation in the United States. While they have discussed such approaches as paying for organs, officials are more in favor of educating the public and alleviating concerns about fairness, Bohrer says.

Other countries have been more heavy-handed in response to donor shortages. Brazilian authorities recently passed a law allowing organs to be used without having the deceased person’s prior consent, such as on a driver’s license or will.

Bohrer is optimistic that Americans will eventually embrace organ donation, and that her students will be the first generation to do so.

“If you supply good information,” she says, “what is logical and right for that person will surface.”

Contributing to this story was Times staff writer Steve Emmons in Orange County.

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For More Information

Here is a sampling of Internet sites offering information about organ transplants:

* Children’s Organ Transplant Assn. (https://www.cota.org)

* U.S. Waiting List, statistics from the United Network for Organ Sharing (UNOS) (https://www.unos.org:80/usd10--23.thm)

* UCI Facts on Organ Donation (https://www.com.uci.edu/ ~ anatomy/willed_body/organs.htm)

* New England Organ Bank (https:ultranet.com/ ~ neob/)

* TransWeb: All About Transplantation and Donation (https://www.med.umich.edu/trans/transweb)