Clinical trials—the kind Jack took part in—usually involve medical intervention. Close to 700 trials are going on at the Clinical Center targeting a variety of disorders. Investigators might be testing a new drug to slow the progress of Parkinson’s, evaluating risk factors in childhood obesity, or developing the next generation of MRI machines. The Clinical Center also sees lots of patients with rare diseases because few drug companies see much profit in developing treatments for such small populations.
“People will ask me what’s available for, say, a particular mental disorder,” says Clare Hastings, chief of nursing at the Clinical Center. “I never say, ‘Nothing,’ because you don’t know what someone at the National Institute of Mental Health might be studying. I tell people how to go on the Web site.”
Radiation of the pancreas is tricky, in part because the gland is so close to the stomach. The first day of treatment proved too much for Jack. He began throwing up before we left the Clinical Center. On the way home, I had to stop the car a dozen times so he could get out.
“It was pretty horrible,” he recalls. “I’d had radiation for my prostate cancer 13 years ago, but I never experienced any nausea.”
When we got to the radiation clinic the next morning, Linda Sciuto, the nurse assigned to Jack, gave him Zofran, an antinausea drug. It worked, up to a point. He began taking it three times a day and never threw up again, but he felt queasy much of the time. The other drugs he tried didn’t help, which puzzled Sciuto and Dr. Citrin. After a couple of weeks, they decided to call in the palliative-care unit.
We had already met with Sara Bergerson, a nutrition-support specialist, who was a great source of advice, recipes, and nutritional-supplement packets. She introduced herself by saying, “I’m here to pamper you.”
Then Karen Baker, a nurse practitioner from the Pain and Palliative Care Service, joined Jack’s team of caregivers. She explained that the service employed specialists to deal with the medical, psychological, social, and spiritual dimensions of suffering, and she probed gently to find out how Jack was coping.
Besides the nausea, he told her, he was suffering from insomnia, loss of appetite, and—something he had never experienced before—anxiety. Karen explained that the palliative-care team could probably help. Along with conventional approaches such as counseling, spiritual guidance, and drugs, the unit offers alternative approaches, including acupuncture, massage, biofeedback, pet therapy, recreation therapy, reiki, and hypnosis.
“Many institutions have palliative-care services, but they are only available for end-of-life care, which Medicare will pay for,” says Ann Berger, chief of the Clinical Center’s Pain and Palliative Care Service. “Here we see patients months to years before death. We also provide many complementary services that other institutions don’t offer because insurance won’t pay for them.”
Jack, the antithesis of New Age Man, surprised me by showing an interest in biofeedback; he learned deep-breathing and visualization techniques that he found calming. I was invited to sit in on these sessions because, as Karen Baker explained, “we have to take care of the whole family, not just the patient, because the caregiver is under a stress burden, too.”
Jack also had counseling, massage, and acupuncture. As an unanticipated benefit, a tremor he’d developed several months before his diagnosis disappeared after two sessions with Dr. Gang Peng, the acupuncturist. But the nausea persisted. The wristbands and scopolamine patch Karen Baker gave him didn’t help, so she suggested Marinol, marijuana in pill form, although it doesn’t make you high. “It should increase your appetite and decrease your nausea and anxiety,” she told Jack.
It helped. Jack began eating and sleeping better, and his nausea eased. “Marinol is a medicine, and it works,” says Dr. Citrin. “We don’t prescribe it for everyone, but we had tried everything we could think of with Jack. Oftentimes, I think the Pain and Palliative Care people are much better versed in the management of these sorts of symptoms, and they get to the right answer much faster. They are an incredible resource.”
One morning toward the end of his treatments, Jack woke up and discovered his urine was dark red. At the clinic, Linda Sciuto sent him to a staff urologist, who took a sample. It turned out he had an infection, which was treated with antibiotics. The urologist scheduled an appointment for Jack in four weeks, even though his radiation treatments would be over by then.
The same kind of support—and more—is available to inpatients. “If there’s a Four Seasons of hospitals, that’s it,” says Lou Statzer, a retired DC businessman who spent the better part of six months in the Clinical Center for treatment of lymphoma. “You push a button and someone is there.”
The Clinical Center is the third-largest federal building in Washington, surpassed only by the Pentagon and the Ronald Reagan Building. Statzer stayed in the newer part of the complex, the Mark O. Hatfield Clinical Research Center, which opened in 2005 after extensive design input from patients. As a result, the building has such amenities as low windows so patients can see out, Internet access at every bedside, a library, an exercise room, a nondenominational chapel, even an ablution room for Muslims to wash before praying.
The Clinical Center also operates a school to serve the 28-bed children’s unit; it sometimes even pays travel expenses for patients and puts up families from out of town. And there’s no struggling with copays or battling your health insurer.
Says Susan Butler of Alexandria: “When they showed me the protocol they were going to use to treat my ovarian cancer, I asked them, ‘How do we pay for this and coordinate this with our health insurance?’ They said, ‘You don’t. It’s all paid for by your tax dollars.’ I was stunned.”