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When Ashlee Malabanan’s cancer metastasized, UCLA’s Children’s Pain and Comfort Care team “provided Ashlee
with as much quality care as was possible during this end-stage of her life,” says her mother, Jeannie Malabanan.
Photo: Courtesy of Jeannie Malabanan
“It is important
to think about
at all stages of
illness — planning
goals of care
with a focus on
communication, quality of life and
care planning is a
34 U MAGAZINE
At such difficult moments, “parents have many
questions but sometimes are afraid to ask them,”
says pediatric critical-care specialist Julianne
Harrison, DO (FEL ’10), one of CPCC’s attending
physicians. “One of the most-common questions
they have is: ‘Will I be able to hold my child?’
Another is: ‘Can I take him outside?’” The CPCC
team not only answers the questions and assists
with such requests, when possible, but moreover,
they also help provide comfort and understanding.
Says Malabanan: “That extra support and
compassion is amazing. I’m so grateful that they
were there for Ashlee and for us.”
MORE THAN 10-MILLION CHILDREN in the
United States live with chronic disease. Of these, 1.5
million have life-threatening illnesses. According
to 2007 U.S. child-mortality data, approximately
53,000 children die each year from their illness — 25
percent before they reach 1-month old and another
25 percent between 1 month and 12 months of age.
While many hospitals have adult palliative-care
and pain-management units, few have pediatric-
palliative and pain-management teams to care
for these young patients and the members of their
families. Although the number of centers with
such programs has been growing, many medical
professionals believe it is not happening fast enough.
Among the increasingly loud voices calling for
change is Stefan J. Friedrichsdorf, MD, medical
director for one of the largest pediatric palliative-
care programs in the country, at Children’s
Hospitals and Clinics of Minnesota, and a pioneer
in the field. “In the year 2014, pain management for
children in the United States remains abysmal,” he
says. “And the younger the child is, the less likely it
is that the child gets appropriate pain medication.”
A significant issue, experts agree, is that society-
at-large does not want to dwell on the thought of
dying children, and support for pediatric palliative-
care programs nationwide is lacking. Rather, the
focus is on finding cures and saving children.
Accepting a terminal diagnosis also is a challenge
for parents and physicians, who are dedicated to
the singular goal of helping and protecting the
child. Even just the word palliative has difficult-to-
overcome connotations when it is linked to a child.
People perceive that requesting palliative care is
akin to giving up, but that is not the case, UCLA and
national authorities assert; it means that everyone
involved — the patient, the family and the medical
team — is hoping for the best outcome but preparing
for the worst. “We can’t predict the future,” Dr.
Friedrichsdorf says. “Some children do live for years
in the end-stages of life. Palliative care means that
we provide them with the best pain and symptom
management that we can for whatever length of time
remains for them.”
Palliative care for children indeed is highly
specialized, and it varies a great deal from that of
adults. Although characterized as “natural” for
statistical purposes, a child’s death is, after all, never
truly “natural.” “Children are expected to reach
adulthood,” says Lonnie Zeltzer, MD, director of
the CPCC. This can stir up a brew of emotional
and psychological needs and special considerations.
Unlike an adult’s, the needs of a child will vary
greatly depending on his or her developmental stage.
And the trajectory of illness to death is often longer
and less predictable for a child than for an adult.
Which children should receive palliative care?
Palliative care should be incorporated into the
care of any child with a potentially life-limiting
or medically complex condition, including
children who are born with conditions they are
not expected to survive or to live through to
adulthood, notes Michaela Nalamliang, NP, CPCC
clinical coordinator. But palliative care should
not be limited to those with an expected limited
life expectancy, she emphasizes. Palliative care should
also be considered for those born with complex
conditions with unknown or long-life expectancies,
those who suffer trauma and those who acquire
complex illnesses. “It is important to think about