Psychologist John Robinson, EdD, sees inside his patients. Literally. He accompanies them into the operating room when they receive transplant surgery.
As the chief psychologist for the department of surgery at Howard University Hospital in Washington, D.C., Robinson is one of an ever-growing group of psychologists nationwide who work with transplant patients on interdisciplinary teams of surgeons, nurses and anesthesiologists--although most don't actually enter the operating room.
"These patients have had to deal with a chronic and debilitating illness and the demands of medical regimens," says Jim Rodrigue, PhD, director of the University of Florida's Center for Behavioral Health Research in Organ Transplantation and Donation. "We [psychologists] facilitate coping and adaptation, improve the quality of their lives, reduce affective stress, reduce substance use, and help prevent relapse."
Certainly not every medical center has a psychologist as part of the transplant team. But the demand is growing. There are approximately 80,000 people on waiting lists for organs nationally; just under 25,000 transplants were performed last year. Psychologists in this area are an integral part of ensuring that patients are ready for transplants and that operations are successful.
"We work to reduce the behavioral risk factors--such as substance abuse, noncompliance or depression--the things that impact outcomes after transplant, both in terms of morbidity and mortality," says Rodrigue.
The activities of transplant psychologists typically involve evaluating patients to determine whether they are transplant candidates, providing support and clinical interventions for patients and their families--and sometimes physicians--and acting as a liaison for physicians and other medical staff.
Surgery alone isn't the answer, says Clive Callender, MD, director of the Howard University Hospital Transplant Center and chair of the surgery department. The best patient care requires a "holistic approach to medicine," which calls for having a psychologist involved with surgical patients before, during and after surgery.
Most often, transplant patients are living with a chronic disease, such as diabetes. Some have immune disorders. And others are plagued by substance-abuse problems that may have led to failing health. Psychologists are uniquely qualified to provide interventions that benefit these patients. They understand how chronic disease is intertwined with emotional health and how, especially in transplant cases, behavioral issues can be the direct cause of medical downfall--like the rejection of a donor organ.
At Howard University, Robinson is director and facilitator of the Transplant and Dialysis Support Group, of which all kidney and liver transplant or potential transplant patients are mandatory members. In the support group, Robinson says patients are encouraged to discuss anything on their minds. For most meetings, there are also members of the surgery team, anesthesiologists and nurses present to help answer questions.
"We talk about the fear of being outside the operating room, we talk about what it's like to be put to sleep, what the impact of the transplant might be on sex," he says. Patients and their families come to the group with questions like 'If I'm male and get a female kidney, what does that mean?' or 'Why does my medication make me look funny?'"
Family members are an important part of the group. "Families and significant others have to live with the patient," Robinson says. "There can be lots of behavioral changes, and family members can help me pick up subtle changes."
"When you have kidney or liver failure it makes you irritable and fatigued," adds Callender. "Family members can think it's personal. But it isn't; it's the illness."
Robinson has to be well-versed in the psychological effects of transplants--in addition to the physical. For example, often patients who get transplants are prescribed steroids, which cause weight gain and hair growth--side effects that prompt many to stop taking the medications. "I have to help them see that the medication will cause weight gain but it's temporary, we'll deal with it," he says.
Robinson also helps patients whose illness is making them behave abnormally. Sometimes people with liver disease develop encephalopathy--toxicity. "It makes them seem crazy. I know to intervene in a different way--I have to talk to the surgeon because their ammonia level is too high," he says. "Knowing the medical side helps me understand the psychological symptoms I see."
Transplant psychologists have to "immerse themselves in the transplant culture and community," agrees Rodrigue, whose team of three psychologists works with six transplant programs--including kidney, liver, lung, bone marrow and heart.
Making tough decisions
Transplant psychologists are also charged with helping to determine which patients are good candidates for new organs--a job function that amounts to life-or-death decisions in some cases.
Mary Ellen Olbrisch, PhD, a psychologist at Virginia Commonwealth University's Medical College, says about 90 percent of her time is spent seeing patients who are being considered for transplant. "I evaluate how they take care of themselves, try to make appropriate plans for substance-abuse patients, depression patients--things that would interfere with surgery. We have to get them ready."
Physicians and insurance companies pay attention to her reports, she says. "Patients have to go through a psychological evaluation in order to be authorized for the procedure. And insurance companies won't approve a patient without a report."
And writing those reports can be tough. "I have to give my best judgment about a patient's prognosis," explains Olbrisch. "What I say is based on scientific literature; we're not just spouting ideas. But there are a lot of ethical concerns, including the fact that you're giving input about life or death."
Sometimes, patients' behavioral problems prohibit them from getting an immediate transplant. For example, if a patient has a substance abuse problem, he or she must show six months of sobriety. And sometimes, when patients aren't able to give up an addiction, "you have to know when to cut your losses," she admits. "We have to be realistic; we can't always 'fix' everyone into a wonderful candidate."
"The ethical issues are endless and fascinating," adds Rodrigue. "Our APA Code [of Ethics] doesn't really deal completely with the issues we confront in this business. Neither does the American Medical Association code. It becomes a team decision."
For example, he says, some adolescents aren't good at taking medications, and their bodies reject their new organs because of that noncompliance. "Should we give them another transplant if they lose the first?" he asks. Or, "Should alcoholics be able to compete equally for transplants? How about someone with limited cognitive abilities?"
The ethical questions loom large when it comes to screening donors, too. Rodrigue tells of a case he and one of his postdoctoral fellows struggled with recently--a young woman who is the only viable family member to donate a kidney to her mother.
"We had a lot of concerns about this donor in terms of behavioral health and the degree of coercion that might exist in the family. Her mother needs a kidney and she's on a downhill medical course. Who are we to say she shouldn't donate despite the risks?" he asks.
The team psychologists, he says, are in a constant dialogue with the bioethicist, the surgeons and other staff on these issues. "Just when you think you've heard it all, there's a new dilemma," he says. "It's truly an interdisciplinary effort in transplantation."
A team approach
As the only psychologist on staff, Robinson is one of the first people the transplant coordinator calls when they find a healthy organ for transplant.
"The patient will be nervous. So I'm there," he says. He goes into surgery with the patients so that he can provide an extra level of support. "I'm responsible for the psychological welfare of the patients as they come into the operating room."
And during surgery, he assumes several roles. "From a human resources perspective, I help in evaluating the surgical team, how they interact with one another." He's also the liaison to the family during the surgery. "I might come out and tell them 'We're about to put the kidney in, here's what the surgeons will be looking for, this is how much time we expect it might take,'" he says.
"I'll work with the surgeon for six hours staring at someone's guts in order for him to listen to me when it comes to patients' psychological needs. I wear a white coat and have blood on my shoes just like [the surgeons] do. It helps that I'm a full member of the surgery faculty here, not just a consultant to the department."
"Many people think that the surgeon's ego is too big to allow the psychologist into the operating room," jokes Callender. "That's not the case. We've done something that hadn't been done before and it's really been a synergistic relationship that's worked for all of us."
But even for experienced transplant psychologists, the job's frequent brush with mortality is challenging. "You see [the patients] each day," Robinson says. "One moment they're fine and the next they're dead. As psychologists, we're not used to seeing our patients die."
He tells the story of one patient he'd worked with who finally received a donor organ. As she was being wheeled into the operating room, she asked Robinson if she'd be OK. He assured her she was in good hands. But then she died on the operating table. "There was really no one I could talk to. So I went into the supply closet and cried. It can be a lonely area sometimes," he admits.
But, Robinson says, despite the loneliness and the long hours, "It's the best job I've ever had."
For Rodrigue, his commitment to the area is personal. "I have a mother-in-law awaiting a heart transplant now," he says. "And my brother died of kidney disease before I was born--before kidney transplants were done routinely in children. This is a really exciting career for me. It's an area where you can truly make a huge difference in people's lives."