PALO ALTO, Calif-- Children facing life-threatening illnesses at Lucile Packard Children's Hospital at Stanford have a new advocate - a team of professionals dedicated to helping them and their families face the end of life with dignity, comfort and support. After conducting a comprehensive needs assessment of staff and patients over the past two years, Packard has developed a Pediatric Palliative Care Program, the first for this institution, and one of the few programs like it in the country.


More frequently found in countries like England and Canada, palliative care is a philosophy that is just now gaining momentum in the United States. It requires a paradigm shift for doctors who are focused on curative, rather than comfort care. Just last year, the American Academy of Pediatrics issued a policy statement recommending that hospitals develop an integrated model of palliative care - one that provides intensive symptom management and promotes the welfare of children living with life-threatening or terminal conditions.

Of the more than 2,000 children with life-threatening conditions treated at Packard each year, between 150 and 200 will die. "We need to do what we can to help these children and their families," said Barbara Sourkes, PhD, the first John A. Kriewall and Elizabeth A. Haehl Director of Packard's Pediatric Palliative Care Program. With 25 years experience in the field, Sourkes was recently named to the Institute of Medicine's Panel on Pediatric Palliative Care. She was also appointed Associate Professor of Pediatrics and Psychiatry and Behavioral Sciences at Packard.

"Palliative care is an active, total and compassionate approach, which includes physical, psychological, social and spiritual dimensions," said Sourkes. It provides respite as well as end-of life-care, and then care for the bereaved family after the patient's death. The goal of the palliative care program at Packard, said Sourkes, is to plan comprehensive end-life care for these children, optimizing their quality of life as well as that of their families.


The program will include a research component to document the effect palliative care has on patients, families and staff. And it will educate physicians and staff to handle palliative care issues, an effort which is already underway at the hospital. This summer, Packard introduced a six-week course for incoming residents to help prepare them to handle their patients' deaths more effectively and compassionately.


Above all, the palliative care model being developed at Packard will be interdisciplinary and comprehensive, and it will permeate the system, said Sourkes. Palliative care requires a coordinated effort by a team of professionals including doctors, nursing staff, psychologists, social workers, clergy and community agencies.


As it is designed, the Pediatric Palliative Care Program is a reflection of the hospital's mission, said Harvey Cohen, MD, PhD, chair of the Department of Pediatrics. "Palliative care is part of our high-tech, high-touch brand of care," he said. "It allows us to realize it is the child and the family we are caring for, not the disease."


Before designing the program, a team of Packard staff members conducted a comprehensive needs assessment, interviewing 68 bereaved family members, and surveying 446 pediatric staff members.

What they found was indicative of what many hospitals face - an awkwardness by staff in dealing with dying patients, as well as many unresolved issues for families. Although most families appreciated the care their children received, 64 percent of families had some negative experience. "Families experienced unintentional, hurtful remarks, remarks which stayed with them for a long time," said Nancy Contro, LCSW, coordinator of education and research for the Pediatric Palliative Care Program, and leader of the needs assessment effort.

Many also reported that their children experienced too much pain at the end. Not surprisingly, the staff felt the same. Staff members often didn't feel well prepared to deliver end-of-life care. They weren't sure how to help families and expressed a need for more support themselves, she said.


Packard conducted this in-depth assessment before launching its program. Because of that initial effort, the hospital is farther ahead in developing a program than many institutions in the U.S., said Sourkes. "There's a real sense of readiness at the hospital," she added. "We don't have to justify this program. The need for it is crystallized."


Lucile Salter Packard Children's Hospital at Stanford is a 240-bed hospital devoted entirely to the care of children and expectant mothers that is celebrating its tenth anniversary in 2001. Providing pediatric medical and surgical services associated with Stanford University Medical Center, Packard offers patients locally, regionally and nationally with the full range of health care programs and services - from preventive and routine care to the diagnosis and treatment of serious illness and injury. To learn more about Lucile Packard Children's Hospital, please visit our Web site at www.lpch.org.