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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
"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
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
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.
In addition to Wolfe and Jane Weeks, MD, MS, the senior author and
chief of the Division of Population Sciences at Dana-Farber, the paper's
other co-authors are Janet Duncan, MSN, CPNP, Charles Berde, MD and
Michael Comeau, RN, MS, of Children's; and Veronica Dussel, MD, Kelly E.
Edwards, Joanna Breyer, PhD, Sarah A. Aldridge, Holcombe E. Grier, MD,
and Jim F. Hammel, MD, of Dana-Farber.
The study was supported in part by a grant from the National Cancer Institute.
Dana-Farber Cancer Institute (www.dana-farber.org)
is a principal teaching affiliate of the Harvard Medical School and is
among the leading cancer research and care centers in the United States.
It is a founding member of the Dana-Farber/Harvard Cancer Center
(DF/HCC), designated a comprehensive cancer center by the National
Children's Hospital Boston is home to the world's largest research
enterprise based at a pediatric medical center, where its discoveries
have benefited both children and adults since 1869. More than 500
scientists, including eight members of the National Academy of Sciences,
11 members of the Institute of Medicine and 12 members of the Howard
Hughes Medical Institute comprise Children's research community. Founded
as a 20-bed hospital for children, Children's Hospital Boston today is a
397-bed comprehensive center for pediatric and adolescent health care
grounded in the values of excellence in patient care and sensitivity to
the complex needs and diversity of children and families. Children's
also is the primary pediatric teaching affiliate of Harvard Medical
School. For more information about the hospital and its research visit www.childrenshospital.org/newsroom.