Study finds improvement in the care of children with cancer at the end of life

Expanded use of palliative care services is associated with enhanced communications between families and caregivers, improved symptoms management, and better quality of life for children dying from cancer, according to study by researchers at Dana-Farber Cancer Institute and Children's Hospital Boston.

Published in the April 1 issue of the Journal of Clinical Oncology, the study's findings also suggest that the parents were more likely to feel they were prepared for their children's end-of-life medical problems.

"Historically, there has been resistance to palliative care and hospice care in the United States, in part because some people feel that using these services is associated with hopelessness and giving up," said lead author Joanne Wolfe, MD, MPH, director of Pediatric Palliative Care at Dana-Farber and Children's Hospital. "This is changing, however, as more people -- caregivers, patients and families alike -- become more familiar with the goal of these services, which is to help each patient live the best possible life."

The retrospective study involved surveying parents and reviewing the medical records of 119 children cared for at Dana-Farber or Children's Hospital and who died from cancer between 1997 and 2004. These data were compared with the findings from a similar parent survey and medical records review of 102 Dana-Farber and Children's cancer patients who died between 1990 and 1997. The study's goal was to determine whether greater focus on palliative care on the local and national levels would affect patterns of care, care planning and patients' quality of life.

Wolfe and her colleagues identified notable changes in the patterns of care. Medical record reviews indicated a 40.7 percent increase in documented discussions about home or hospice care in the follow-up study (76 percent of medical records included a note that palliative care options were discussed with the family, up from 54 percent). There also was a 16.4 percent increase in do-not-resuscitate orders (78 percent, up from 67 percent). The proportion of children who died at home remained similar between the two studies, but, in the second study, there was a 42.1 percent decrease in the proportion of the children who died in the intensive care unit (22 percent, down from 38 percent).

Although the follow-up study indicated that children were proportionately as likely to experience fatigue, pain, shortness of breath, or anxiety, they suffered less from the symptoms, with the exception of fatigue.

Wolfe said that one of the most meaningful findings to her was the shift in where children are dying. "Fewer children are dying in the intensive care unit, and that is likely because other options are open to families," explained Wolfe. "This might be because there are more opportunities to have conversations around this intensely sad outcome, but at least it is making a bit of a difference in the context of losing a child to an illness. Dying in the ICU might be the right location for some children and families, but at least they are aware that they have options."

Results from the baseline study, reported by Wolfe and her colleagues in the New England Journal of Medicine in 2000, indicated that children who died from cancer at Dana-Farber or Children's Hospital received aggressive treatment at end of life, many experienced substantial suffering, and efforts to control symptoms were often unsuccessful.

Though it was difficult to share the two institutions' data publicly, Wolfe said it was clear that the majority of hospitals in the U.S. were lacking significantly in the field of pediatric palliative care. She now appreciates that the study served as a call to action for many hospitals, including Dana-Farber and Children's Hospital.

The findings from the first study prompted caregivers and administrators at Dana-Farber and Children's to identify ways to improve care for children with life-threatening illnesses and their families. This led to the establishment of the pediatric advanced care team (PACT) in 1997. PACT's primary goal is to help children live as well as possible for as long as possible.

PACT utilizes several strategies to improve the care of children and their families, including holding a monthly multidisciplinary case-based conference to educate caregivers about palliative care; providing clinical consultations to caregivers and patients and their families in the inpatient, outpatient and home settings; and developing system-wide improvements to promote consistent, though flexible, care. For example, they worked to change hospital policy so that children dying with cancer can be admitted directly to the oncology inpatient unit rather than require them to be seen in the emergency room before being admitted.