In 1998, Adam Vasser, a 13-year-old teenager who loved playing baseball, was vacationing in Montana with his family when he suddenly came down with what felt like the flu. When he had trouble breathing and his ankles became swollen, his parents took him to a nearby clinic where the doctor on duty checked his vitals and sent him directly to the hospital across the street. By the time the family arrived at the hospital a few minutes later, Adam was in complete heart failure.
For months, Adam waited in a hospital for a heart transplant, during which time his heart was only able to pump with the assistance of a left-ventricular assist device (LVAD). “It was the size of a washing machine and it had two tubes that went through my chest into my left ventricle to help it pump blood,” Adam, now a 30-year-old teacher in the San Francisco Bay Area, recalls. “My official diagnosis was idiopathic viral cardiomyopathy. Meaning, basically, a virus of unknown origin had attacked my heart.” Four and a half months after getting sick, Adam underwent a heart transplant that saved his life.
But thousands of people aren’t as lucky. In the United States alone, 21 people die everyday waiting for an organ transplant. Though about 45 percent of American adults are registered organ donors, it varies widely by state. More than 80 percent of adults in Alaska were registered donors in 2012, compared to only 12.7 percent in New York, for example. In New York alone, there are more than 10,000 people currently waiting for organ transplants. According to data compiled by the Organ Procurement and Transplantation Network, more than 500 people died in New York last year, waiting for an organ to become available.
Given this shortage of organs, why don’t more people donate?
It’s a touchy question, something non-donors aren’t necessarily keen to answer. But experts say there is a large disparity between the number of people who say that they support organ donation in theory and the number of people who actually register. In the U.K., for example, more than 90 percent of people say they support organ donation in opinion polls, but less than one-third are registered donors. What keeps well-intentioned people from ultimately donating is something that academics, doctors, and organ-donation activists are trying to figure out.
In a recent literature review, researchers at the University of Geneva examined several social and psychological reasons why people choose not to donate, either by not registering as an organ donor during their lives, or electing not to donate the organs of their next of kin.
The study cites mistrust in the medical field and lack of understanding about brain death as major barriers to donation. A 2002 study in Australia, for example, illustrates the controversy surrounding brain death. Some participants indicated that they wouldn’t donate the organs of their next of kin if his or her heart were still beating, even if they were proclaimed brain-dead.
Studies have also shown that the less people trust medical professionals, the less likely they are to donate. The mistrust can come from personal experience—one study in New York showed, for example, that next of kin who perceived a lower quality of care during a loved one’s final days were less likely to consent to donation—or from misconceptions about how the medical community treats registered organ donors.
“There are a lot of people who subscribe to the belief that if a doctor knows you are a registered donor, they won’t do everything they can to save your life,” says Brian Quick, an associate professor of communication at the University of Illinois.
More than half of people, one study shows, have gotten information regarding organ donation from TV, so it makes sense that researchers are concerned with how fictional medical dramas can influence our attitudes toward medical professionals (a topic The Atlantic covered in August).
Quick and his colleagues have studied how watching Grey’s Anatomy can influence people’s attitudes toward the medical community. “We found that heavy viewers of the show saw Grey’s Anatomy as realistic, meaning that they felt the images and the stories were realistic. And the more realistic they saw these stories, the more likely they were to buy into medical mistrust.”
Religion is another factor that repeatedly comes up in research. While many religions consider organ donation an act of love, some research has shown that Catholics are less likely to donate than other religious groups, despite the Vatican’s official position in favor of it. It seems that this is due to a belief in the afterlife and the concern for maintaining body integrity.
It could be that people are simply uncomfortable or unwilling to talk about death at all. In a survey of more than 4,000 students and their families from six universities throughout the United States, some people indicated concern that making plans for death would bring it about prematurely (which might also account for the fact that only 25 percent of Americans have advance directives). Others can’t shake the “ick” factor. Defined by researchers as “a basic disgust response to the idea of organ procurement or transplantation,” a 2011 study in Scotland found that non-donors reported higher levels of the ick factor and concern with body integrity than donors.
In a study of British women who had not signed up to be donors, researchers found that they were uncomfortable talking about death, with one participant saying, “The underlying taboo is that you have to be dead, potentially, well, you have to be dead […] Nobody really wants to think about that.” The research suggests that the more matter-of-fact attitude people have when talking about death and normalizing the issue of organ donation, the more likely they are to sign up as donors.
And this is where a lot of people think the solution comes in. “What we’re trying to do in New York is move the cultural needle on the issue,” says Aisha Tator, executive director of the New York Alliance for Donation. “Organized tissue donation should be a cultural norm like we did with bike helmet and seatbelt interventions.” Her organization isn’t the only one. Throughout the United States there have been a smattering of recent educational campaigns and studies on their efficacy. Campaigns have targeted the young, the old, nurses, DMV employees, and ethnic minorities who tend to donate less than white Americans or white Brits.
Another, more ambitious, strategy people point to is to change from the United States’ current opt-in system to an opt-out system, which would mean that everyone would be a donor by default, unless they actively opted out.
In a recent study conducted in the U.K., researchers studied the organ-donation systems of 48 countries over 13 years and concluded that Spain, with an opt-out style of consent, had the highest rate of organ donation of the countries studied and represents a successful model to emulate.
But beyond being a political and bureaucratic nightmare to actually make happen, changing the American system to an opt-out system might not fix the problem.
“The Spanish model is held up as the ideal, and in many ways it is,” says Eamonn Ferguson, a professor of health psychology at the University of Nottingham and one of the researchers on the study. “They have an opt-out system, but they also have a very coordinated, hierarchical, interlinked system of well-trained organ-transplant professionals.” Adding to the complexity of the issue is the fact that the rate of live organ donations is lower in countries with opt-out systems.
Some groups of people have tried to take the issue into their own hands. Lifesharers and other organ sharing networks, in which members promise to donate organs upon their death and give priority to fellow member donors, highlight that notions of reciprocity and fairness are incentives for at least some people.
The transplant system in Israel is a case study for how these ideas can be systematized. A change of law in 2010 that prioritizes patients with a history of donation—if a family member donated his or her organs or the patient himself made a living donation or if the patient has been on the donor list for at least three years—has incentivized a significant portion of the population to register as donors.
Preliminary results, published last year, show that the annual deceased organ-donation rate increased from 7.8 organs per million people in 2010 to 11.4 organs per million people in 2011. The number of new registrations per month more than doubled and the total number of candidates waiting for a transplant fell for the first time ever.
The new law, which was coupled with a multimedia campaign called ‘Sign and Be Prioritized’ and a streamlined registration process, has also changed who receives organs.
“More than 35 percent of those who actually got organs after the law was passed got them because of the prioritizing system,” says Dr. Jacob Levee, director of the Heart Transplantation Unit at Sheba Medical Center who spearheaded the change and authored the results. “It’s not just a dead-letter law. We’ve seen an actual change in how organs are being allocated.”
Though the Israeli case is compelling, for some, the decision to donate might not be rational at all. If the idea of someone cutting them open makes people feel sick, they are probably unlikely to sign up.
“Unfortunately unless you’re personally touched by the issue, unless you have a child that gets a virus and suddenly needs a new heart, you don’t really think about it,” Tator says. But it’s not only recipients like Vasser who can be touched by a transplant. The parents of at least one donor have become vocal advocates of organ donation after the loss of their son.
In 2003, Matthew Messina, a 25-year-old student at Chico State, was struck by a drunk driver while riding his bike home from a barbecue. Soon after his family arrived from New York, Matthew was in a coma. After running a series of tests, the neurosurgeon determined that he was brain-dead and recommended taking him off life support.
Matthew’s father Sam Messina says that when the organ-procurement team approached him and his wife, they knew it was something that Matthew, who was a reservist in the Marines and volunteered with handicapped children in his spare time, would have wanted to do.
“We stay in touch with two women in California who received organs from him. Both are married with families,” Sam Messina, who now gives talks about organ donation and is on the board of directors at the Center for Donation and Transplant, told me. “When I look into their eyes, I see a little bit of Matthew moving on.”