by Kate Kruschwitz
Few acts of generosity have had more impact
on families facing pain, grief and loss than Catherine Pappas's gift to the Pediatric Advanced Care Team (PACT). Optimizing a child's quality of life during advanced or terminal illness, and helping families navigate the toughest roads, is PACT's mission. With the Pappas gift, which includes a challenge grant to inspire other donors, PACT continues to make a compassionate difference for the Belloras, the Webers and families coping with the unthinkable.
Garrett Bellora, born with cystic fibrosis, was a pro at long hospital stays. But when he was put on a waiting list for a double lung transplant at Children's and his condition became progressively worse, he and his family felt overwhelmed. Fortunately, PACT knew how to help. "From the beginning, PACT has guided us psychologically, socially and emotionally, as well as physically," says Garrett's mother, Alyson. "They helped us look at the whole picture of our son's illness—and how we could improve aspects of his care beyond the medical."
The physicians, nurses and social workers in PACT's internationally renowned program work to prevent, reduce or soothe symptoms, and help families create meaningful experiences with a sick child. Adding comfort—even fun—to balance disease treatment is an essential component. In Garrett's case, PACT caregivers noticed how much he loved making art, and made sure he participated in art therapy at Children's and at home. Even more significant was the special technique, auto-hypnosis, that PACT physician Tamara Vesel, MD, taught Garrett. "Mastering this skill transformed him," says his mother. "It taught him to focus his attention inward, to calm himself and regain some control over his mind/body experience. It got him through the transplant."
Adds Garrett, "Whenever I see Tamara I feel happier and calmer right away. She makes me feel special—that I'm not just about my illness."
Unfortunately, Garrett, now 11, suffered complications a year after he received new lungs, and for half a year he's been listed for a second transplant. Wheelchair-bound and unable to attend school, he's facing his future with courage—and with many PACT resources supporting him. Seeking purpose and meaning, Garrett wants "to help other kids going through transplants," so team members are helping him write and illustrate a book about his experiences.
Multidisciplinary, family-centered, psychosocial health care for children with advanced illness is relatively new territory. PACT was founded in 1997, as a joint program of Children's and Dana Farber Cancer Institute, and is today recognized as a pediatric palliative care model—striving for optimal comfort when cures may no longer be possible. It now covers diseases beyond cancer, including degenerative neurological, cardiac and pulmonary conditions like Garrett's.
Headed by Medical Director Joanne Wolfe, MD, MPH, the expert clinical staff includes Vesel, clinical social worker Marsha Joselow, LICSW, nursing director Janet Duncan, CPNP, and coordinator Rita Fountain. Together they guide families over difficult terrain—often for many years. Their decision-making "road map" supports the patients, families and primary medical team. The pathways include managing pain and symptoms, facilitating communication, addressing family dynamics and sibling issues, coordinating hospital and home care (and home visits) and enhancing life's quality and significance. Some children recover, but for other families, care continues through bereavement counseling.
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PACT's model resonated with Catherine Pappas. In honor of her late husband, Stephen, she made a real estate gift whose proceeds established the Stephen E. and Catherine Pappas Palliative Care Fund at Children's Hospital. "The Pappas gift ensures the program's services can meet demand, which has increased more than 200 percent in the last three years," says Wolfe. A portion of the gift offered a challenge grant supporting and expanding PACT's research, training and clinical care. Among other things, the gift funds the only pediatric palliative care social work fellowship program in the country. This year's fellow helped two dying children create memory journals and initiated a program to counsel patient siblings.
In the Pappas family's honor, Children's named the Stephen E. and Catherine Pappas Lobby and Comfort Corner—a family suite for palliative end-of-life care—in the new wing of the hospital's Main Building. Says Mrs. Pappas, "I expect this gift to increase medical choices and quality of care for many families fighting these terrible diseases."
Donors Tom and Nancy O'Neill also designated PACT for their gift. "Years ago our kids came to Children's for routine pediatrician visits and I knew how fortunate we were," says Nancy. "As a parent it's almost impossible to imagine your child facing the end of life. When we heard about PACT we knew we wanted to support it."
Responding to Mrs. Pappas' challenge grant, the O'Neills' gift also supports the fellowship program and PACT research. Wolfe has initiated a multi-site study examining quality of life in kids with advanced cancer. This study will examine—and seek ways to alleviate—distressing symptoms such as extreme fatigue.
Palliative care is a burgeoning field with training programs in high demand. PACT hosts visiting scholars from hospitals worldwide almost every week. In addition, Wolfe and Vesel teach an annual Harvard continuing medical education course in adult palliative care education and practice (PCEP). Each year, 60 doctors, nurses and social workers from around the country learn about palliative clinical care, teaching methods and organizational change to bring back to their own institutions.
"Now we need a pediatric PCEP course, with case studies involving children," says Wolfe. "Besides our social work fellowship, PACT also offers one of the country's only two physician training programs. Further philanthropic support will ensure we remain in the forefront—enabling us to add nursing and create a unique interdisciplinary fellowship—a nurse, physician and social worker training together. Palliative care is becoming a formal, certified, pediatric subspecialty, and people look to us for education and training."
Editor's note: After a long, courageous battle, Garrett Bellora passed away on July 29, 2006. Children's Hospital Boston extends heartfelt condolences to the Bellora family.
For more information on how you can help PACT, contact Lynn Susman in the Children's
Hospital Trust at (617) 355-5344 or lynn.susman@chtrust.org.
