Solace and support: Pediatric palliative care program launches at Boston College
by william bole, photographs by suzanne camarata
A little more than two years ago, Dorothy Shuler got a call from a nurse practitioner at an outpatient center in New York City, asking if she wanted to talk. At the time, Shuler and her husband were in shock: their eight-week-old son, Owen, had just been diagnosed with a rare, inherited neuromuscular disease, and the prognosis was grim. "I don’t want to talk to you," Shuler recalls saying. "I just want to sit here and hold my baby."
A week later, the nurse practitioner called again, and Shuler was ready. She and Vanessa Battista '01, now a clinical instructor at the Connell School of Nursing, talked almost every day for the rest of Owen's short life.
When Owen could no longer hold regular infant toys, Battista made sure he was given cat toys like feather wands and fur balls, light enough for him to handle. When his respiratory mask made him uncomfortable, she stepped in and arranged to have a mask made specially for him. And when options were presented for aggressive treatment the Shulers felt would only prolong Owen's suffering, Battista became their advocate. "She was our sounding board," says Shuler, whose child succumbed to Type-1 Spinal Muscular Atrophy on August 16, 2008, at five months of age. "She knew what we wanted and she fought for us."
Battista came to Boston College in January 2010 to develop the curriculum for a program in pediatric palliative care—the kind of attention and intervention she provided Owen and his family. The Connell School has established the nation's first graduate-level program for this emerging subspecialty, which focuses on preventing or relieving physical and emotional distress of children and adolescents living with chronic or life-threatening conditions.
Pediatric palliative care is holistic, and designed to ease symptoms and side effects of severe chronic conditions from the time of diagnosis through the course of the illness. Its goal is to diminish suffering, and to help children and their families live more comfortably and experience better quality of life.
Such a comprehensive approach has been late in arriving to health care. Palliative care has its origins in oncology and therefore is often associated with the end of life; the stress is on relieving pain and suffering, along with options for treatment and cure. For that reason, it is a particularly sensitive subject when children are involved. "Children aren’t supposed to die. And people are uncomfortable talking about that," says Battista, who majored in psychology and minored in health sciences and faith, peace, and justice at Boston College, then went on to attend nursing school at Columbia University.
A major spur in expanding interest in palliative care is that many children are not dying—they're living with illnesses once labeled terminal. Diseases, including some forms of leukemia and brain tumors, "used to be death sentences, and now they're turning into chronic illnesses," observes Patricia Tabloski, the Connell School's associate dean of graduate programs.
Owen's story is serving as a lesson and inspiration for students enrolled in the new graduate-level program, which launched last summer with an introductory class taught by Battista called Foundations of Life-threatening Illness, Disease Progression, and Quality of Life. It incorporated theory and in-class practice in some of the more difficult elements of nursing practice, including conveying a devastating diagnosis to a patient or family.
Shuler was patched in by phone during one session to talk about challenges Owen and his family faced during his three-month illness. The family's experience helped Mary Cogan, one of 29 students who took the summer class, appreciate the scope of pediatric palliative care. "It's not just about physical needs; it's also about supporting children and families emotionally, socially, and spiritually," said Cogan, who is studying for her certification as a pediatric nurse practitioner and works at Children's Hospital Boston and the nearby Dana-Farber Cancer Institute.
Living with chronic conditions has its own challenges, and the pediatric palliative care umbrella covers the support and management of living with illnesses outside clinical settings: helping a child who may need accommodations return to school, advising parents who wonder if their daughter is well enough to go out for cheerleading, or helping families weigh the risks and rewards of taking a long-postponed family vacation. "Kids should be kids. They should be able to play, to the extent that they can, of course," Tabloski points out. "That's what it's all about."
The new pediatric palliative care concentration is supported in part by a three-year grant from the Health Resources and Services Administration, a federal agency that focuses on improving access to health care among those who are considered medically vulnerable, including children and the uninsured.
Dorothy Shuler, who lives in a northern suburb of New York, is part of this effort. She is one among an 18-member board that also includes nurse practitioners, physicians, a lawyer, social workers, and researchers. She came to Chestnut Hill this fall as a spokeswoman for families coping with life-threatening illness, and as a new mother. On August 9—shortly before the second anniversary of Owen's death—Shuler gave birth to a baby girl, Natalie Frances Shuler. ✹