Better understanding of prognosis linked to greater emphasis on easing suffering of children with advanced cancer

November 13, 2000

BOSTON --There is considerable delay among parents in recognizing when children with advanced cancer have no realistic chance of cure, according to a Dana-Farber Cancer Institute and Children's Hospital-Boston study published in the November 15 issue of The Journal of the American Medical Association (JAMA).

Researchers conclude earlier recognition of this prognosis by both parents and physicians could lead to stronger emphasis on treatment directed at lessening suffering and greater integration of palliative care.

"Caregivers and parents are appropriately committed to curing children with cancer," says Joanne Wolfe, MD, MPH, Instructor in Pediatrics at Harvard Medical School, Dana-Farber Cancer Institute and Children's Hospital, and lead author of the study. "Unfortunately, not all children will survive, so it's important that we emphasize effective integration of palliative care at the same time as treatment of the underlying disease."

The authors interviewed 103 parents of children who died of cancer between 1990 and 1997, as well as surveyed the child's primary oncologist and reviewed their medical charts. They asked when parents and physicians became aware that the child had no realistic chance for cure; what factors were associated with a greater similarity in the timing of parent and physician awareness that the child was terminally ill; whether understanding the child's prognosis altered parents' treatment goals; and what outcomes were associated with earlier parent-physician recognition of prognosis.

On average, physicians recognized that the child had no realistic chance for cure around 100 days earlier than did the parents. When both parent and physician recognized the child's prognosis more than 50 days prior to death, there was a stronger emphasis on treatment aimed at lessening suffering. The authors report that there was earlier documentation of a discussion of hospice, better parental ratings of the quality of care delivered by the home care team, earlier institution of a do-not-resuscitate order, less use of cancer-directed treatment in the last month of life, and [five times] higher likelihood that both physician and parent identified the primary goal of cancer-directed therapy to be to lessen suffering.

"We found that high quality palliative care is more likely when both physicians and parents recognize the child's prognosis," says senior author Jane Weeks, MD, of Dana-Farber. "This highlights the importance of honest, effective communication between caregivers and families of seriously ill children."

When asked how they first came to understand that their child had no realistic chance for cure, only 49 percent of parents reported that this resulted from a discussion with the medical team; 30 percent reported that this understanding came from a perceived change in the way their child looked or acted, and 9 percent reported that this understanding came from a feeling or dream.

Based on early data from this study, in 1997, Wolfe led the effort at Dana-Farber and Children's to establish a pediatric palliative care service known as PACT -- the Pediatric Advanced Care Team. This multidisciplinary team advises caregivers of children with advanced disease about ways to manage symptoms and improve quality of life.

PACT members also help to coordinate care in the inpatient, outpatient and home care settings. In addition, PACT members lead teaching sessions, and are developing new ways to improve communication among physicians, patients and their families.

"The study data bear out what we were seeing anecdotally and inspired us to create PACT. Our team consists of caregivers from many different disciplines committed to maximizing comfort in children with life-threatening illness, and providing support and information to families. PACT helps us step back, regroup, and refocus on the families' and patients' overall care experience," says Wolfe.
This research was supported by the Agency for Healthcare Quality and Research, Project on Death in America, and the David B. Perini, Jr., Quality of Life Program at the Dana-Farber Cancer Institute.

Staff at Dana-Farber and Children's Hospital--Boston, have worked together since Dana-Farber's founding in 1947 to provide a closely collaborative plan of care for children with cancer. Inpatient care is provided at Children's and outpatient care at Dana-Farber. Children's Hospital and Dana-Farber Cancer Institute are two of the nation's premier medical centers. Both are teaching affiliates of Harvard Medical School and each is home to a leading research enterprise.

Dana-Farber Cancer Institute

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