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By GRACE HAMMERSTROM Children facing life-threatening or life-limiting illnesses at Lucile Packard Children’s Hospital 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 is developing a Pediatric Palliative Care Program, the first for this institution, and one of the few programs like it in the country.Palliative care requires a paradigm shift for U.S. doctors, who are focused on curative, rather than comfort care. But it’s a shift that’s gaining momentum. 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 the Pediatric Palliative Care Program at Packard. An international leader with 25 years of experience in the field, Sourkes comes to Packard from Montreal Children’s Hospital in Canada. The goal of the new program, according to Sourkes, is to plan comprehensive end-of-life care for these children, optimizing their quality of life as well as that of their families Why palliative care? Two years ago, under the direction of Harvey Cohen, MD, PhD, chair, Department of Pediatrics, Nancy Contro and her colleagues conducted an extensive needs assessment of hospital staff and families. They personally interviewed 68 bereaved family members who lost children cared for at Packard over the previous two years, and surveyed 446 pediatric staff members. What Contro found was reminiscent of what many hospitals are facing – an awkwardness among staff in dealing with patients who are dying, as well as many unresolved issues for families. Although most families appreciated the care their children were given, 68 percent of families had some negative experience. "Families experienced unintentional, hurtful remarks, remarks which stayed with them for a long time," Contro pointed out. Many also reported that their children experienced too much pain at the end. Not surprisingly, the staff felt the same way. Staff members didn’t feel well prepared to deliver end-of-life care. They didn’t know how to help families or themselves, she said. Unlike most hospitals, Packard conducted this in-depth assessment before launching its program. Because of that initial effort, the hospital is far ahead in terms of developing a program, 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." What is palliative care? Palliative care is deeply compassionate care, said Sourkes. "It is an active, total and compassionate approach, which includes physical, psychological, social and spiritual dimensions." It provides respite as well as end-of life care, and then care for the bereaved family after the patient’s death. Packard is developing a three-pronged approach to its Pediatric Palliative Care Program, explained Lorry Frankel, MD, director of the Pediatric Intensive Care Unit (PICU). First and foremost is patient care. Secondly, the program will include a research component to show how palliative care affects patients, families and staff. Lastly, the program will educate physicians and staff on how to handle palliative care issues, an effort already underway at the hospital. This summer, Packard introduced a six-week course to teach incoming residents about end-of-life care. Above all else, 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. Unlike other programs that are linked to oncology services, Packard’s program is unique in that it will reside in the pediatric ICU, the center of many end-of-life decisions and services. "The program does not discriminate on diagnosis," said Sourkes. And it will strive to be sensitive to the cultural difference of the highly diverse population served by the hospital. Improving end-of-life care A palliative care program is a tremendous asset to delivering comprehensive pediatric care, according to Frankel. "We don’t always do a very good job of total patient management of our complicated pediatric patients," he said. As patients begin to die, many are sent to the PICU, where a doctor unfamiliar to the family is the first to tell them that their child is dying. Ideally, that discussion should take place earlier in the process, according to Frankel. And it should be handled by the patient’s attending physician, with the help of a palliative care expert. More than anything, families want continuity of care through the end. As a patient gets close to death, the natural reaction of physicians is to feel helpless and back away, explained Tess Reynolds, the mother of Matthew, who died at age 8, after being treated for bone cancer at Packard. "At the end of life, the whole experience is about quality of life, which requires more personal interaction, not less. Hopefully, this program will give physicians the training and resources to do that," she said. When her son Matthew died, his pain specialist called to express his sympathy, and told the family how Matthew had touched him. "It made Matthew’s life more sacred," Reynolds recalled. "He wasn’t trivialized." As it is designed, the Pediatric Palliative Care Program is a reflection of the hospital’s mission, said Cohen. "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.
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Stanford Report, October 17, 2001
