2012 EDUCATIONAL BOOK - American Society of Clinical Oncology

Communication and Decision Support for
Children with Advanced Cancer and
Their Families
By Jennifer W. Mack, MD, MPH, Chris Feudtner, MD, PhD, MPH,
and Pamela S. Hinds, PhD, RN
Overview: Clinician communication related to treatment decision
making is a fundamentally important health care intervention
and is often reported by parents of seriously ill
children to be the most valued of clinician skills. Since
different children and families have different communication
styles and expectations, and since these may change over the
course of the illness experience, one of the early and recurring
tasks is to clarify and work with these diverse styles and
expectations. Adopting a stance of compassionate desire to
know more about patients and families, in addition to imparting
information, is vital, and can be facilitated by following a
general strategy of “ask, tell, ask.” In addition to the exchange
of information, communication between clinician and patient
PALLIATIVE CARE is centered on children with lifethreatening
illnesses and their families. As such, the
values and goals held by individual children and families
guide plans for care, and the child’s quality of life and
symptoms—physical, psychologic, spiritual—are of primary
importance. These principles affirm that the child is valued
and guide care from diagnosis through all phases of illness.
For patients with progressive cancer or serious complications,
communication practices founded on these principles
set the stage for palliative care when it is needed. In this
article, we offer practical guidance for clinicians who care
for children with advanced cancer, addressing various aspects
of communication and supportive decision making
across the illness trajectory (see Fig. 1).
Communication across the Illness Experience
Communication, central to the work of caring for children
with advanced cancer, has three primary purposes. First,
communication allows for the exchange of information and
the development of shared knowledge. Communication goes
both ways: from the family and child as well as to them, and
sometimes wordlessly, in shared silence. Second, communication
serves as the foundation for a relationship between
the child, parent, and clinician, in which the parents and
child can feel known and understood. Third, communication
provides a forum for decision making. The type of decision
may change over time, but even when parents and children
approach painful decisions about end-of-life care, they can
use familiar processes and relationships as an anchor.
Sharing Information
The first communication goal that spans the illness trajectory
is the sharing of information. Clinicians must both
seek information from and impart information to children
and their families, and what we choose to discuss sets a tone
for the central issues of care.
A useful general communication strategy is “ask, tell,
ask,” in which communication from the clinician is framed
by the child and family. For example, when discussing a
cancer diagnosis, one might start by asking the child or
family, “What is your understanding of the diagnosis so far?”
and family also involves the signaling and exchange of emotions,
in which the pace, verbal inflection, and body language
of the conversation are fundamental. Discussions about prognosis
and goals of care, while needing to be handled in a
gentle manner, should start early in the illness experience and
be revised whenever there is a relapse or major complication.
Children often want to participate in these conversations to a
degree of their own choosing, which they themselves can
clarify. Effective and empathetic clinician communication can
greatly facilitate decision making and care for children with
advanced cancer and their families, and provide a substantial
source of comfort.
Their answer helps the clinician to know where to start, and
correct any misconceptions. After communicating information,
the clinician can use a final question to check understanding
(“I want to make sure that I’ve explained things.
Can you tell me what you are taking away from this
conversation?”) and assess the emotional effect (“How are
you feeling now?”) of the news.
Even at diagnosis, conversations may be incomplete without
honest discussion about the child’s future, including the
nature of the illness and the prognosis. These conversations
are hard—cognitively, emotionally, socially, and spiritually—and
clinicians may understandably avoid them. 1,2 Yet
most parents worry about their child’s future from the
day they hear the word “cancer,” and want prognostic
information, even if they find it upsetting. 3 In addition,
starting such conversations at diagnosis helps with transition
to palliative care if treatment fails.
We recommend the following steps when talking about
prognosis, 4,5 in line with the general strategy of “ask, tell,
ask”:
● Consider what the child or family needs to know about
prognosis, and when they need to know it. In some situations,
if the family does not want prognostic information,
then the clinician need not discuss it. In other situations,
such as a very poor prognosis or acute deterioration, true
informed consent may not be possible without it.
● Ask the family and/or child what they understand about
what lies ahead.
● Unless you have already decided that the family needs
From the Department of Pediatric Oncology and the Center for Outcomes and Policy
Research, Dana-Farber Cancer Institute, Boston, MA; Harvard Medical School, Boston,
MA; Pediatric Advanced Care Team, Department of Medical Ethics, PolicyLab, The
Children’s Hospital of Philadelphia, Philadelphia, PA; Department of Pediatrics, The
Perelman School of Medicine at the University of Pennsylvania, Philadelphia, PA; Children’s
National Medical Center, Washington, DC; The George Washington University,
Washington, DC.
Authors’ disclosures of potential conflicts of interest are found at the end of this article.
Address reprint requests to Jennifer Mack, MD MPH, 450 Brookline Ave., Boston, MA
02215; email: jennifer_mack@dfci.harvard.edu.
© 2012 by American Society of Clinical Oncology.
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