The Emotional Fallout of Disease
Small team of mental health specialists helps kids cope with effects of medical treatments

BY THERESA JOHNSTON

SPRING 2006 -- Chemotherapy is never easy.

For 17-year-old Nick Clark, the nausea and vomiting that accompanied his treatments for biphenotypic leukemia last fall were particularly challenging. For a while the high school senior from San Mateo took anti-nausea pills, but their effect wore off. Then he tried aromatherapy and acupuncture, to no avail. Finally, when the avid soccer player was down to 107 pounds, his oncologist at Lucile Packard Children's Hospital referred him to experts in the Hospital's Pediatric Psychiatry Consultation-Liaison Services.

Nick Clark, 17, with psychiatrist Richard Shaw, MD: Nick learned techniques to deal with hig side effects from chemotherapy.

Working with the program's medical director, Richard Shaw, MD, Nick learned the techniques of self hypnosis that effectively helped him to quell the queasy feelings that had been churning in his stomach for months. "I started eating that day, and for the next week I didn't throw up at all," the poised, dark-eyed teenager marvels. "I've got it to the point that when my nausea hits, I don't have to lie down. I just close my eyes and concentrate on other things."

Now in remission, Nick has been handling the emotional fallout from his disease remarkably well. But he says, "I could easily see how other people couldn't take it." He'd be right on that score. According to Shaw, up to 40 percent of children with long-term medical illnesses have an accompanying psychiatric diagnosis such as depression or post-traumatic stress disorder.

"It's a terribly under-recognized problem," says Shaw, who's co-authoring the first-ever medical textbook on the subject. "At Packard, we do some invasive, high-tech interventions that save lives. But some kids end up traumatized after these treatments. Part of the goal in our services is to find ways to minimize these stress reactions and enhance coping in children. It's not enough these days just to save someone's life. You've got to make sure the quality of life afterwards is good."

Staff Shortage

Carl Feinstein, MD, director of the Division of Child and Adolescent Psychiatry.

Carl Feinstein, MD, who took over the helm of Packard's Division of Child and Adolescent Psychiatry last summer, couldn't agree more. He notes that while Shaw and his colleagues are highly regarded throughout the Hospital, they're having a tough time keeping pace with Packard's extraordinary growth. Patient admissions have more than doubled over the past decade. In addition, units like Packard's stellar pediatric cardiology program are attracting more complex cases that require teamwork by many specialists, including mental health experts. Yet currently, Packard's Pediatric Psychiatry Consultation-Liaison Program only has enough staff—one psychiatrist, one psychologist, two child psychiatry fellows, and one psychology intern—to see about 12 to 18 children a day, mostly on an inpatient basis.

Feinstein also is troubled by what happens to these patients after they leave the Hospital. Families often have a hard time locating qualified physicians to continue therapy in their home towns. There's a severe shortage of child psychiatrists nationally, and finding one who's also used to dealing with medically ill children can be nearly impossible. To make matters worse, many families have trouble convincing their insurance companies to pay for follow-up psychiatric treatment, if they have insurance at all.

To address these problems, Feinstein is hoping to hire more staff for Pediatric Psychiatry Consultation-Liaison Services in the coming year. He's also dreaming of something new: an affiliated Medical Psychiatry Continuity Program that would continue to help the sickest Packard patients and their families cope with the emotional toll of serious illnesses even after they've gone home.

As he explains, "Right now, we don't have a good way of keeping our families engaged after discharge, of being sure that the children take the medicines they're supposed to take, or dealing with the stresses the parents, siblings, or the ill child have. At a hospital like Packard, for kids with severe medical illnesses, we have to offer a full range of care -- the kind of care that Dr. Shaw and his team provide."

Meds Compliance

L ike Feinstein, many of Packard's top physicians are enthusiastic about beefing up the Hospital's pediatric psychiatry services. Among them is kidney transplant surgeon Oscar Salvatierra, MD. He agrees that an expanded program could be helpful, particularly in dealing with adolescent transplant patients who balk at taking their anti-rejection medications. According to one recent study, about a third of teenage kidney recipients aren't adhering to their anti-rejection treatment regimens, putting their very lives at risk. "We have had a number of adolescents admitted to the Hospital for treatment of rejection because they were not regularly taking their medications or stopped taking them," Salvatierra notes. "For example, adolescents can stop taking their medication because of peer pressure or to get back at their parents."

Daniel Bernstein, MD, chief of the division of pediatric cardiology, says that non-compliance is one of the leading causes of late rejections and mortality among heart transplant patients as well. Last December, for example, 17-year-old Jayleen Plant of Martinez was admitted to Packard's unit at El Camino Hospital when tests showed her donor heart was beginning to fail, about three years after her transplant. As the Willow High School senior now admits, "I wasn't taking my [anti-rejection] medicine because the pills made me nauseous. I just didn't feel like taking them." Like many adolescents, the girl dug in her heels even more when Mom started pressuring her.

Heart transplant patient Jayleen Plant, 17, with her cardiologist, Clifford Chin, MD: The teenager got help from psychology intern Jenny Trapani, MS, when she stopped taking her anti-rejection medications.

In that case, Shaw and psychology intern Jenny Trapani, MS, met with Jayleen to help her understand the gravity of her condition and her reasons for not taking her medication. They also conducted some family therapy sessions so that the girl and her mother could learn to interact on a more positive basis. Today Jayleen is feeling much better, taking classes at Diablo Valley Community College, and looking forward to her high school graduation. As Shaw says, "She's still at a high risk of relapse, but at least we got more of a commitment [to the therapy]. She's on a better track."

Easing Pain

Psychologist Michelle Brown, PhD, is another member of Packard's Pediatric Psychiatry Consultation-Liaison team. In a typical day, she and her psychology intern, Carol Wong, MS, might handle seven or eight cases. They spend a lot of time supporting cancer patients and their families, whether they're facing the shock of initial diagnosis, the disappointment of relapse, or end-of-life issues. They may comfort a child who has just lost a sibling, or calm a young patient about to undergo a frightening medical test. Frequently they'll help to diffuse tension between Hospital staff and angry or frightened parents. They also work with children who are having trouble with pain management. "There's certainly a demand for this kind of comprehensive service," Brown said, taking a break for a brief phone interview on one of her hectic days. "One of the things that we always hear from families is: 'I wish I had known about you sooner.'"

One of Brown's typical patients, a teenager from the East Bay, had been suffering from headaches most of her life, yet multiple doctors and tests had not been able to pinpoint a cause. By the time she got to Packard, the pain was so bad, it was interfering with the girl's ability to attend school or participate in social activities. Over two years of supportive psychotherapy, Brown taught the girl to cope with the discomfort and manage her stress through a combination of relaxation training, guided imagery, and self-hypnosis. Today, the girl is back at school full time and active in student government. "She still experiences pain on a daily basis," Brown says, "but she is not as affected by it as she was. She has a positive attitude about her future. Things are more under her control."

Feeding Problems

The Pediatric Psychiatry Consultation-Liaison program also provides help for children who have developed phobias and anxiety disorders as a result of their illnesses. For example, some young patients who've been on liquid diets or feeding tubes during their infant and toddler years develop so-called "feeding aversions" as they grow. It's not that the kids aren't hungry; they just hate the sensation of chewing and swallowing real food. It's a fairly common situation, Shaw says, and particularly distressing for parents. Yet Packard is the only hospital in Northern California with staff experienced in helping these children.

14-year-old Steven Lundell and his mother, Della: The psychiatric liaison team worked with mother and son to ease Steven's fears about eating and lessen their meal time battles.

Shaw recalls one such patient, Steven Lundell of Hilmar, near Modesto, who was born with Down Syndrome as well as problems with his heart and lungs. For years, the boy staunchly refused to eat anything beyond baby food, and even that was a struggle. As his mother, Della, recalls, "feeding became a torture thing for him." Meals could take hours and restaurants were out of the question. So Packard admitted the 9-year-old for several weeks, placing him under the care of a multidisciplinary team that included a pediatric psychiatrist, gastroenterologist, language specialist, and a physical therapist. They worked to ease Steven's fears and cheerfully coached him through every meal, so that by the time of his discharge, he was feeding himself and willing to eat pretty much anything, as long as it could be mashed with a fork.

Today, Steven is a 14-year-old high school freshman and a fan of spaghetti. As for mom, the Packard program was nothing short of a lifeline. "The first time we ever went to a restaurant was to Casa de Fruta, on the drive home," Della says now, clearly relishing the memory. "Life today is so much better than it was before."

Not Just for Kids

As Steven's case shows, children aren't the only ones helped by the folks at Packard's Pediatric Psychiatric Consultation-Liaison Services. Over at the Neonatal Intensive Care Unit (NICU), Shaw and his colleagues frequently are summoned to help new parents deal with the trauma, anxiety, and depression that almost inevitably go with having a very sick baby. "We've done a lot research in this area," Shaw says, "and what we've found is that 50 percent of mothers experience an acute traumatic stress reaction after having a baby in the NICU." Shaw recalls one young mother who couldn't bear to go outside because she feared seeing another baby who would remind her of her own. Many have nightmares and flashbacks about the experience, or find themselves jumping every time a beeper goes off. Fathers also experience stress reactions, but they tend to manifest later, after the initial crisis has passed.

Shaw and one of his postdoctoral students, Rebecca Bernard, MD, now are conducting a study at the Packard NICU to see if timely cognitive behavioral therapy can head off anxiety-related disorders in the mothers and fathers of these fragile newborns. The research involves two groups of about 40 parents each. One serves as a control, while the other attends three therapy sessions where the parents learn how to interact with their babies in the NICU, how to relax the tension in their bodies, and how to develop positive thinking habits so they don't view every hiccup as a catastrophe in the making.

NICU trauma: Shaw and his colleagues use cognitive behavioral therapy to treat anxious and depressed parents who have newborns in the neonatal intensive care unit.

Shaw says it's important to identify stress in these parents early, because if you don't, it's the children who tend to suffer down the road. For example, many well-meaning mothers unwittingly foster hypochondria in children after they leave the NICU by constantly scanning them for symptoms and rushing them back to the doctor each time they get a cold. Other parents are so worried about hurting their recovering child’s feelings they hesitate to impose any discipline at all -- with predictable results. "A lot of times, if you look at these babies when they're 2 or 3 or 4, what you find is that a lot of them are little terrors because the parents feel guilty and don't set limits on them," Shaw says. "They're these wild kids because the parents are overcompensating."

Who Pays?

In an ideal world, health insurance companies happily would pay to head off mental health problems in transplant patients, or in the siblings of cancer patients, or in parents of babies in the NICU. In practice, Feinstein laments, that's hardly ever the case. "It's a classic problem of who pays," he says. Consultation-Liaison Services is doing the best it can, "but the Hospital can't pay for the four or five more people necessary to do the job because of inadequate reimbursement for our services."

Still, Feinstein and his colleagues are committed to growing Packard's Pediatric Psychiatry Consultation-Liaison Services. "There are many, many barriers to doing everything as well as it could be done," he acknowledges. "But we know pediatricians really want this. A lot of them say what you do is good, but it's just the beginning, It's not nearly enough.We need much more." As he sees it, "If you want a first-class children's hospital, you need first-class mental health programs."