To give or not to give

Overcoming the fears and myths of organ donation

by Richard P. Morin

LAWRENCE BENTO

Like thousands of others waiting for organ transplants in the US today, Cranston resident Lawrence Bento anticipates a phone call that may never come. Bento needs a new kidney. Both of his stopped working three years ago, and since then, he has undergone dialysis four times a day to clean his body of deadly toxins.

But more painful and exhausting than dialysis is the wait for a new kidney, says Bento. Because of a shortage of donated organs in New England, the 42-year-old computer programmer and father of two has been on an organ-transplant waiting list for three years -- first in Hartford, Connecticut, and now here in Providence at the recently opened kidney-transplant center at Rhode Island Hospital.

In New England, kidney-transplant candidates such as Bento (130 in Rhode Island alone) wait up to 1400 days for a compatible donated kidney, which is twice the national average. As a result, says Bento, "it can be tough knowing that the phone call you've been waiting and praying for might never come."

Part of the problem is that although national and regional surveys show widespread support for organ donation, Rhode Islanders and the rest of the nation remain reluctant to give up their own organs or a deceased loved one's. And this makes for a cruel equation for organ-recipient candidates. In the US there were some 2500 organ donors last year, while the number needed to meet the nation's present demand is estimated to be between 10,000 and 15,000. On a regional level, there were 194 organ donors in New England last year; in Rhode Island, a mere 27, which, encouragingly enough, was almost twice the previous year's total.

Much of the apprehension surrounding organ and tissue donation in Rhode Island and elsewhere is a result of misconceptions and myths, say medical professionals and regional organ bank officials. These myths range from the fear that organ donors will receive inferior medical treatment to the misconception that surviving family members will be responsible for the cost of the procurement of donated organs from deceased loved ones.

"People need to get the proper facts, and people need to start thinking of organ donation as people helping people, instead of getting caught up in the myths," says Karen Libutti, hospital coordinator for the Rhode Island office of the New England Organ Bank (NEOB).

Unfortunately, the best weapon against these untruths is organ-donation education, which is scattershot at best in Rhode Island. Although federal and state governments have done much to educate Americans about their health in recent years, efforts to provide the public with information about organ donation and transplantation pale in comparison to HIV/AIDS and breast and prostate cancer public-awareness campaigns.

In Rhode Island, there are no formal state programs beyond an outreach initiative at the Registry of Motor Vehicles to educate the public about organ donation and transplantation. To pick up the slack, grass-roots organizations formed by transplants recipients, such as the Rhode Island Organ Donor Awareness Coalition (RIODAC) and the state branch of the Transplant Recipient International Organization (TRIO), "are substituting the best we can with the limited capacity we have for what could be the role of government," says Dr. Augustino Zabbo, a heart-transplant recipient and the head of RIODAC.

Ultimately, then, the job of education falls to a small, core group of volunteers, who struggle to push forward a unified agenda. "I often feel like an ambassador for organ donation and transplantation," says Florence Browning, a kidney-transplant recipient who heads TRIO, which is based at South County Hospital. "People are generally open to receiving information about organ donation and transplantation, but I am always amazed at how little they know."

Betsey Strock, director of public education for the NEOB, agrees. "National surveys show that people say they support the idea of becoming an organ donor, but those numbers don't match up with those who actually do," she says. "I believe many people think it is a complicated process, like making out a will, when in fact it is not. All people need to do is register as an organ donor and make their family aware of their wish to be an organ donor."

Not that groups like RIODAC haven't made significant progress over the years. Prior to joining the Coalition on Donation, a national organ-donation promotion group, RIODAC was a grass-roots organization working to educate Rhode Islanders one person at a time. But in recent years, RIODAC's efforts have become larger in scope. They now sponsor a statewide organ-donation poster contest for high school children, while members of their speakers bureau address community and corporate groups.

Still, outside of these efforts, the first place Rhode Islanders are likely to hear about becoming an organ donor is at the Registry of Motor Vehicles in Pawtucket. Although it has been a longstanding practice for registries nationwide to broach the subject of organ donation when people apply for or renew a license, there is some debate within the organ-donation procurement and education community over whether these registries are the best place for this. "I think the registry is a good place for information about organ donation, but a bad place to make a decision," says Strock.

To ease people into it more gently, RIODAC has worked closely with the Rhode Island Department of Motor Vehicles (DMV) to enact more comprehensive practices and procedures for asking Ocean Staters if they would like to become an organ donor. RIODAC is also creating information pamphlets to be placed at the registry, so Rhode Islanders can make more informed choices.

The NEOB, which is designated by the federal government to handle organ procurement in New England, has added public education to their list of activities as well. Today, the organization runs two sets of television advertisements in Rhode Island and across the region each year to urge people to consider becoming an organ donor. The ads, says Strock, appear to be quite effective -- the number of calls for information about organ donation skyrockets by more than 1000 percent in the weeks following the air dates.

"In the beginning of organ donation, which is a young field, we were trying to do the best possible job with the actual recovery of organs," says Strock. "It is a fairly recent development for organ banks to think they can provide information that will help people make more informed decisions about becoming an organ donor."

RICHARD FORBES

Now the NEOB even trains people, many of whom are transplant recipients or families who have donated organs from deceased loved ones, to speak with community groups about issues surrounding organ donation. In Rhode Island, Richard Forbes, who received a liver transplant three years ago, is one such person working with the public to dispel myths and misconceptions about organ donation.

"I think people really don't think seriously about the issue of organ donation until they, or someone they know, is faced with a transplant or has received one," he says. After Forbes received his liver transplant, for instance, many of his neighbors in Warwick became organ donors.

"I can understand the trepidation people have about becoming an organ donor. Before I went through all this, I thought the idea of becoming an organ donor was yucky, too," says Forbes. "But those thoughts are really irrational when you sit down and think about it. Why take your organs with you when you die, when you can help someone to live?"

A former actor, Forbes, who entered a masters degree program in social work at Rhode Island College this semester, is now focusing his life's work on helping others and improving organ-donation awareness. "My life has taken on new meaning," he says. "If I can get just one person to become an organ donor, I will feel as if I have accomplished something."

People like Forbes, says Dr. Paul Morrissey, a kidney-transplant surgeon at Rhode Island Hospital, are part of the solution to recruiting the federal and state governments in organ-donation outreach. "The more success stories [of people getting transplants] receiving public attention, the more involved they've [the federal government] become in public education," says Morrissey.

In fact, the federal government has already taken a step in the right direction, sending out organ-donation information and cards to 70 million Americans last year as part of their tax refunds.

The other key to organ-donor awareness, of course, lies with the very people who perform and aid in organ transplants. Libutti says that before she could focus her attention on raising public knowledge about organ donation in Rhode Island, she had to work with the state's hospital-based doctors and nurses to convince some of them of the significance of the procedure.

"It has gotten a lot better," says Libutti of the willingness of doctors and nurses to call the NEOB when a patient appears to be a suitable organ donor. "A lot of the education is getting doctors to see beyond death." It is also teaching them how to help others overcome inherent biases against organ donation.

National statistics show that close to half of the families who are approached about organ donation decline to contribute their deceased loved one's organs. Many of them cite the common myths surrounding organ donation -- doctors disfiguring the deceased, family members paying for organ procurement, and the organs going only to the rich and connected -- as reasons.

"But these excuses are just that -- excuses," says Libutti. "There is not truth to any of them. The [organ procurement] procedure is no more disfiguring than what is done to the body when it is embalmed. The New England Organ Bank and the recipient's insurance company pay for the operation, not the family of the organ donor."

Religious beliefs are also often cited as a reason why people choose not to donate, even though most major religions, including the Catholic Church, support organ donation. "And those that don't support it leave it up to the individual," says Libutti. She notes that even Pope John Paul II has publicly endorsed organ donation, which should have had a significant impact on the overwhelmingly Catholic state of Rhode Island.

A final obstacle to approaching a family about organ donation has to do with the traumatic circumstances under which such a request is likely to occur. "You're meeting families in the absolute worst situation -- they have just lost a loved one," says Libutti.

To counter this, she has learned how to concentrate on the good that can come from organ donation. "I am trying to make families understand that something positive can come from a tragedy. And for many people, that can be of great comfort when they have just lost someone they love."

Still, if there is any disagreement within a family as to whether a deceased individual should be an organ donor, the NEOB makes it a practice not to push for organ donation. They do so not only out of consideration for the surviving family members but for the sake of good public relations. "The American public is already skittish enough about organ donation as it is. We cannot afford negative press," says Libutti.

Indeed, after 60 Minutes aired a segment recently asserting that doctors take organs from people who aren't dead yet, the number of donations dipped nationwide.

But the media can have a positive impact as well. In Rhode Island, when popular television reporter Jim Taricani of WJAR-Channel 10 needed a heart transplant, reports on his plight fueled public interest in organ donation. And television and newspaper reports on the newly opened kidney-transplant center at Rhode Island Hospital have helped increase public awareness as well, Libutti says.

In fact, although the kidney-transplant center, which performed its first transplant in March, was scheduled to perform 12 transplants in its first year, it performed 18 in its first four months. The transplant program, the only one of its kind in Rhode Island, is booked through the fall with living-donor kidney transplants.

The new transplant center was certainly a blessing for 27-year-old Kevin Smith of Cranston. After a viral infection damaged his kidneys and necessitated a transplant, Smith stayed on an organ transplant waiting list for three years. Each month, he traveled to Boston (where more than half of all Rhode Islanders used to receive treatment and kidney transplants before Rhode Island Hospital opened its own program) to check the status of his name on the list. And each month his name slowly rose higher on the list.

While Smith waited, he grew sicker. His dialysis treatments three times a week debilitated him to the point where climbing stairs was next to impossible. Smith was also forced to abandon his studies at Northeastern University in Boston because of the progression of his illness.

A phone call from Rhode Island Hospital's transplant center, however, changed all that for Smith, one of the first two recipients of a kidney transplant here. "Getting my transplant so close to home was great. I really wish I knew the family who donated my kidney. Without them, I wouldn't be here today," says Smith. Today, he plans to return to Northeastern University to finish his degree in audio engineering.

As for Bento, until a kidney matching his body type becomes available, he goes about his job and raising his two teenage daughters, a task made all the harder with the passing of his wife last year. "I had a couple phone calls, when I was on the list in Hartford, saying they had found a match for me. But just as we were heading out the door, they called back and said that it wasn't as good of a match as they first hoped," he says. "But if people would just sign those organ-donor cards and tell their families, people like me could be helped so much quicker. Becoming an organ donor is the most noble thing one can do."