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Every day, 18 people die while waiting for a heart, liver, kidney, lung or other vital organ transplant.
Despite this need, most Americans don’t opt to donate their organs. In 2009, only 37 percent of U.S. residents age 18 and over were registered organ donors, according to a survey by Donate Life America. That survey also found that while most Americans express interest in donating their organs and tissue, misperceptions about the process keep them from doing so. For example, 52 percent of survey respondents said they feared physicians would not try as hard to save their lives if they were organ or tissue donors.
Psychologists, as specialists in human behavior, motivation and communication, are working to help dispel such myths and improve the overall donation process. They’re helping patients and families to explore live donations from friends and relatives. They are also working to reduce disparities in who receives organ transplants: Blacks, for example, are four times more likely than whites to have kidney failure, but are less than half as likely to receive transplants from living donors.
“Organ transplantation really exemplifies a lot of issues that come up in other areas of psychology and behavioral medicine, including issues around chronic disease and disparities in access to health care,” says Mary Amanda Dew, PhD, a psychologist at the University of Pittsburgh School of Medicine and Medical Center.
Psychologists are also evaluating potential recipients for transplants to ensure candidates have the support they need to follow strict post-transplant lifestyles. And psychological researchers are studying the factors that appear to help some patients live longer than others.
“The medical community is very new to — but also very embracing of — the role that psychologists can play” in this area, says Larissa Myaskovsky, PhD, a social psychologist at the University of Pittsburgh School of Medicine who studies the effects of discrimination on organ transplantation. “There are so many avenues that are rich for this work.”
Increasing donor registration
Why aren’t more Americans signed up to donate their organs? Claremont Graduate University health psychologist Jason Siegel, PhD, says it might just come down to low motivation.
“This is something that people can put off, literally, until they die,” says Siegel, Co-editor with colleague Eusebio Alvaro, PhD, of “Understanding Organ Donation: Applied Behavioral Science Perspectives” (Wiley-Blackwell, 2010).
To combat this ambivalence and increase organ donation registration rates, Siegel and Alvaro developed the “IIFF Model” of organ donor registration behavior. The model suggests that four factors can directly increase donor registration:
- An Immediate and complete opportunity for registration, by offering the chance to enroll in the state donor registry, for example.
- The provision of Information about registration availability, procedures and religion-based objections.
- Focused engagement, asking potential donors for their reasons for not registering.
- Favorable activation, stimulated through a group discussion designed to confirm pro-donation beliefs and debunk anti-donation myths.
In an evaluation of a pilot program using the model published in Psychology: Health and Medicine (Vol. 15, No. 2), researchers reported that nearly 50 percent of the study’s 131 focus group participants, who had been screened ahead of time to be “passive-positives,” signed donor cards at the end of the intervention.
“Extrapolated to the general population, such a finding could result in millions of new registrants and greatly improve the frequency of life-saving transplants,” Siegel says.
Other psychologists are working to increase organ donor registration by bringing empirically tested educational interventions to workplaces. University of Chicago social psychologist Michael Quinn, PhD, found, for example, that people who attended brief educational sessions where they were given information on the need for organ donation, heard the stories of a transplant recipient and the family of a posthumous organ donor, and then were provided specific instruction on how to become an organ donor were almost twice as likely to sign up for donations compared with a control group that attended a health fair and received brochures on the topic. (Progress in Transplantation Vol. 16, No. 3.)
These types of community and workplace-based programs may provide the greatest promise in improving organ donation rates, says Mary Ganikos, PhD, public and professional education chief of the U.S. Health Resources and Services Administration Division of Transplantation, which funds grant programs focusing on organ donation and partners with public and private organizations throughout the country to promote awareness of the need for organs.
“We basically reach out to institutions where people work, worship, study and spend leisure time, and ask them to help us encourage the American public to sign up as organ donors,” she says. “It’s really a social psychology outreach approach.”
Encouraging living donation
Psychologists are also easing the wait time for organs by encouraging patients to consider living donations. According to the latest data from the United Network for Organ Sharing, 44 percent of organ donations now involve living donors. Living kidney donation is most common, and living liver donation, where a portion of a donor’s liver is transferred to a recipient in need, is possible for some patients. There’s also evidence that living donor organs can result in better transplant recipient health and survival outcomes.
Psychologists have found, however, that many patients — particularly minorities — find it overwhelming to talk to their families about living organ donation and therefore never discuss the possibility with them. These patients may not know how to bring up the topic, or might fear the answer will be no. Others may be too concerned about risking a family member’s health or worried about disappointing the donor if the organ fails, Dew says.
Several psychologists are helping patients get around those concerns. In a 2007 randomized, controlled trial with 132 end-stage renal disease patients, for example, researchers found that patients who participated in a home-based educational program that fostered family decision-making and discussion about living donation increased patients’ willingness to discuss living donation with other people. The intervention also led to a higher number of living donor inquiries to the transplant program, more donor evaluations and more living donor transplants than a conventional clinic-based educational intervention that included only the patient and an accompanying family member. The researchers, led by James Rodrigue, PhD, a clinical psychologist at Beth Israel Deaconess Medical Center, say the informal setting and family-based discussions with a trained health educator made patients and their families feel more comfortable about asking questions and sharing their concerns about donation. (American Journal of Transplantation, Vol. 7, No. 2)
In an effort to help minorities better understand living donation, Emory University social psychologist Kimberly Jacob Arriola, PhD, is developing culturally sensitive educational materials for black end-stage renal disease patients that improve their understanding of living donor transplant as a treatment option. “The hope is to be able to increase their knowledge about living donation but also to boost confidence in their ability to have a conversation with their friends and family about it,” Arriola says.
Reaching patients where they are
Yet before a patient can even approach family about considering evaluation for a living donation, medical professionals must make it clear that transplantation is even an option. A lack of information, coupled with a fear of surgery, often causes eligible patients to pass up a transplant evaluation — a step that’s required to get on the nation’s waiting list, says Amy Waterman, PhD, a health psychologist at Washington University School of Medicine in St. Louis. Her research has also shown that kidney failure patients on dialysis are often so overwhelmed by the lifestyle changes they’ll need to make for dialysis treatment that they’re given little or no information on kidney transplantation by their physicians in the crucial first months after being diagnosed.
“Very few people even understand that dialysis is not equivalent to a working kidney, so many don’t even realize that this treatment doesn’t always have to be as good as it will ever get for them,” Waterman says.
In 2004, she developed a program called “Explore Transplant,” which trains dialysis nurses and social workers to talk to kidney disease patients about what they value — be it being able to travel freely or watch their children or grandchildren grow up. Using discussion guides and videos, the program teaches the health-care professionals how to discuss living and deceased donor transplantation, provide information on the process and work with patients to develop a plan.
A randomized, controlled trial of the program, presented by Waterman at the 2009 American Transplant Congress, found that, compared with patients who received standard transplant education provided at their dialysis center, “Explore Transplant” patients had greater overall transplant knowledge and were more likely to pursue a transplant. More than one-third contacted a transplant center about undergoing an evaluation, compared with 22 percent of the control group, Waterman says.
Yet even patients who get themselves in for a transplant evaluation may face additional hurdles to transplantation — particularly if they think the medical system may be discriminating against them, says Myaskovsky. Her research — presented at the 2010 American Transplant Congress — shows that patients who have previously perceived discrimination or racism from a health-care professional take more time to get approved for kidney transplant surgery because they often proceed more cautiously through the approval process. To help these patients move forward more quickly with their transplant evaluations, Myaskovsky is developing a program to help transplant teams identify those who felt discrimination even before the evaluation process begins. Then, the program will work with these patients to schedule their screenings and shorten the evaluation process to take place over a few days, rather than several months. “It’s not about trying to change their beliefs about discrimination because those are experiences they’ve already had,” she says. “But what we can do is change how we practice our clinical care, and target those patients for intervention.”
Evaluating donors and recipients
Even if a patient successfully completes all of his or her medical screenings, an organ transplant is far from a sure thing. For years, psychologists have assessed the psychological health of potential transplant recipients and evaluated their support structures to help ensure they will be able to adhere to the lifestyle changes and rigorous medication regimen they’ll face after the surgery.
“Post-transplant adherence behavior is a very important aspect of the transplant process because you’ve invested all this time and effort into giving this patient the scarce resource of a kidney,” Myaskovsky says. “You want to make sure they’re doing everything they can to keep that kidney healthy.”
Dew says one of the key factors in post-transplant success is a supportive, healthy caregiver. In research presented at the 2010 International Society for Heart and Lung Transplantation, Dew found that patients whose caregivers reported a greater burden and decreased quality of life in the year post-transplant were likely to be less healthy themselves and had lower rates of long-term survival.
“We were surprised that the caregiver’s well-being had that kind of impact on the recipient’s chance for a long life,” Dew says. “This shows just how important it is to make sure that caregivers are also in good health pre-transplant, and that they won’t be totally burned out by their caregiving responsibilities.”
As living kidney donation increases, however, organ recipients and their caregivers aren’t the only ones who need psychological assessments pre- and post-transplant. Mental health professionals also play a role in evaluating potential donors, to ensure they’re providing this generous gift with full knowledge of the potential risks and benefits involved. It’s important to make sure organ donors aren’t donating because they felt pressured into it and that they have the supports they will need for the recovery process, Dew says.
From a psychological perspective, an evaluation may suggest a potential donor has mild depression, a substance abuse problem or anxiety disorder — complications that Dew says must be treated to ensure the donor is as healthy as possible before the transplant. Evaluations may also simply find that the donor is overwhelmed by the process and needs more time to think through whether this is something he or she really wants to do, she says.
“It sounds like a simple intervention — giving them more time to make their decision — but the potential donor may not have thought that this was even a possibility,” Dew says.
Education is working to save lives, albeit more slowly than needed. Many experts say the need for organs is only going to multiply, thanks to an aging population and increasing rates of diabetes and hypertension, two major causes of kidney failure. As experts in human behavior and motivation, psychologists will continue to have their work cut out for them in this field, Ganikos says.
“This is the only field of medicine that depends on the generosity of the human public to make it happen,” she says. “We have the medical technology and pharmaceutical expertise in place to make transplantation doable, but we don’t have enough of the human element we need to save more lives.”
Amy Novotney is a writer in Chicago.
