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January 2005
Last of Days Life Traumatic for Children with Cancer, Study
Cancer is the most common cause of non-accidental
death in children. Research by a group of physicians found that
little is known about the suffering of children near death from
cancer; what their last days are like, and whether they are
offered the high quality palliative medication available to
dying adults.
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When cancer strikes, the objective is to cure the child.
Thoughts about how toxic the therapies can be, quality of the
child’s life, even his growth or her development are less
important than the cure. A physician may focus only on that goal
even when there is little or no hope. Yet 25% of children with
cancer will die from it. Researchers set out to discover how
comfortably these children spend their last days, and to learn
what the medical community can do to improve the last days of a
child with cancer.
Methods
The study was performed in Boston, at a Children's Hospital and
at the Dana–Farber Cancer Institute. Physicians interviewed
parents of children who died of cancer between 1990 and 1997.
Interviews were conducted with one parent from each of 102
families selected between September 1997 and August 1998.
Data was collected using a questionnaire based on a review of
literature and opinions of parents and healthcare providers.
Parents were asked about their perception of how their child
felt during his or her last month of life and the quality of
care received by doctors. Researchers also controlled for the
parents’ age, sex, race, level of education, annual household
income, and religion.
Results
Fatigue, pain, dyspnea (difficulty in breathing), and poor
appetite were common problems. The percentage of children who
had these symptoms ranged from 19% - constipation and diarrhea -
to 57% - fatigue. 89% experienced a lot of suffering from at
least one symptom, and 51% from three or more. Children who died
of a treatment-related complication suffered more from symptoms
than those who did not.
Parents reported that during their last month of life, children:
• had little or no fun-53%
• were more than a little sad-61%
• were not calm and peaceful most of the time-63%
• were often afraid-21%.
70% of parents said their child's death was very peaceful,
regardless of the cause.
Conclusions
Researchers determined that the last days of life for children
with cancer are very traumatic. They suggested that more
attention be made toward symptom control in this population.
This might ease the suffering of children in the advanced stages
of the disease. The medical community should recognize and
improve communication between parents and care givers to help
these children during their last days.
Complete findings of the study can be found in The New England
Journal of Medicine, Volume 342:326-333, Number 5
Inquiries:
Dr. Weeks at the Center for Outcomes and Policy Research and the
Department of Adult Oncology, Dana–Farber Cancer Institute, 44
Binney St., Boston, MA 02115
Email:
joanne_wolfe@dfci.harvard.edu.
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