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palliative care at all stages of illness — planning
and re-planning goals of care with a focus on
communication, quality of life and good symptom
control,” notes Elana Evan, PhD, director of CPCC’s
comfort-care research and program planning.
“Advance care planning is a process, not an event.”
From the moment the team is first consulted,
it will review a patient’s entire medical history to
know precisely what the patient has gone through
and make recommendations to the child’s primary
physician group on medication adjustments that
can greatly ease a child’s symptoms and his or
her pain. Earlier this year, the team was asked to
consult on an infant who had been in the PICU for
six months after a heart transplant. The young boy
was constantly crying and agitated, and the nurses
had a hard time approaching him. Nothing seemed
to soothe him. When the team was called in, the
physicians reviewed the baby’s medical history.
A medication that was being administered at
bedtime to help him sleep but which wasn’t doing
much good was switched to the morning to help
calm him. In addition, he was prescribed an
anti-epileptic that is also administered to provide
neuropathic relief. Gradually, the child calmed,
and he has since been removed from breathing
support and now is a playful child, although still
medically precarious, the team says.
Team members stress that a CPCC referral is
not a hospice referral, although transitioning to
hospice care is an option with which the team will
assist, if needed. In some instances, consultation
with the CPCC is automatic. Such automatic
consultation recently was implemented by UCLA’s
pediatric bone-marrow-transplant unit for all of
its patients. Children who need a bone-marrow
transplant are at significant risk and often have
distressing symptoms. The CPCC team is able to
assess the best medication approaches and also
recommend strategies such as massage or other
non-medical soothing therapies.
Being brought in early for consultation on any
case can make a significant difference, CPCC team
members say. “It’s better when the family knows you
for weeks or months,” Nalamliang says. The earlier
the team can become involved, the better. Ideally,
Nalamliang says, that connection is made at the
time of diagnosis. “That allows our team the time to
get to know the children and their families,” she says.
“Conversations about goals of care, particularly the
provision of life-sustaining treatments, evolve more
naturally when we have that relationship.”
Neil Wenger, MD ’84 (RES ’87, ’90, FEL ’89),
director of the UCLA Health Ethics Center and chair
of Ronald Reagan UCLA Medical Center’s ethics
committee, agrees. “It really is critical because it
creates a relationship early on with those who will be
able to provide advice regarding symptom control,”
Dr. Wenger says. “While they may not ultimately be
needed for difficult end-of-life decisions, if they are,
they are already well-known and integrated.” The
situation is made more complicated when the patient
is a child and not a decision maker, he adds. “By
getting to know the patient and her family members,
the members of the team are often able to integrate
what the child would want and what the parents
think is best for their child’s care.”
To accomplish this, UCLA’s team works
closely with all facets of the healthcare community,
including child life, social workers, spiritual care, as
well as all medical departments from anesthesiology
to transplant services. In addition, the team has
close relationships with outside hospice providers
and rehabilitation centers and also works to ensure
appropriate arrangements for any transitions needed,
whether for short-term or long-term care.
Sometimes the issues of care can become a
tangle of conflicting wishes and desires. Not every
member of a family may agree on what approach to
take, or a child who is old enough to state his need
may have different ideas than those of the parents.
In some cases, it can be difficult for loved ones to
perceive the child’s suffering, Dr. Wenger notes.
In such situations, the team’s experience can be
indispensable. The team also tries to help families
to be at peace with their decisions and avoid regrets.
Questions that are carefully addressed include such
issues as intubation — the placement of a tube in the
airway for a breathing machine — for example. One
parent told Dr. Harrison that if she had known that
her son, who was dying of cancer, would never be
free from the tube and therefore never be able to talk
again, she would not have agreed to intubate him.
These are the difficult questions that the team tries to
address beforehand. And whenever possible, when
the child is a minor but has a sense of what he or she
wants, the team tries to respect the child’s wishes by
communicating with the parents.
UCLA’s Children’s Pain and Comfort
Care program helps families to
process and survive the ordeal of a
child’s death.
WHY THEY GIVE
The UCLA Children’s
Pain & Comfort Care
program was established
with critical pilot funding
from the UniHealth
Foundation in 2008. In
the following years,
investments from both
The Ralph M. Parsons
Foundation and the
UniHealth Foundation
have helped the program
expand its offerings and
research to broaden the
impact of its services.
“Their support has
given us the ongoing
tools to both grow and
develop our innovative
model as well as
sustain the program
as it exists today.
They believe in us
and the services we
provide to pediatric
patients, families
and healthcare
providers and want
to see us thrive.”
– Elana Evan, PhD
CPCC program director
U MAGAZINE
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