2012 EDUCATIONAL BOOK - American Society of Clinical Oncology

detailed prognostic information, ask them what they want to
know. Some patients and families will wait for the physician
to offer such information. Clinicians who do not routinely
offer prognostic information may leave some children and
families without information they want.
● For families who want information, provide an honest
estimate, without euphemisms. Adult patients with cancer
are more likely to understand the prognosis with one negative
fact; although providing reasons to be more hopeful
than the mortality or morbidity data suggest may make
physicians feel better, it can cause families to be overly
optimistic. 6
● Ask the parents and the child how they are feeling, and
respond appropriately.
● Remind the child and/or family that you will be see them
through. Although we cannot ensure that the course will be
easy, we can help them to feel less alone.
When treatment fails or results in a life-threatening
complication, this information must also be shared. As
outlined above, we recommend assessing the child’s and
family’s understanding of the situation, providing information,
then checking understanding and asking how they
are doing (ask, tell, ask). Importantly, families value clear
language, without euphemisms. Clinicians sometimes focus
on treatment rather than prognosis, 7 perhaps because this
is something we can offer in a difficult situation. Conveying
a poor prognosis with honesty, however, can help parents
make the best decisions for their children. Many families
also appreciate honest expressions of empathy or sadness.
While there are no “right” words for this situation, one might
say, “I wish the news was different. I am afraid that the
scans show the cancer has returned. Unfortunately we know
that when the cancer comes back, it is not curable. This is
such sad news.” Often the precise words used are less
important than the relationship between the clinician and
the patient and family, since communication works best in a
context of caring and trust.
Developing Relationships
The second communication goal, the development of a
relationship between the parents, child, and clinician, also
begins at diagnosis. Children and families need to know that
their caregiver cares about them, can be trusted, respects
KEY POINTS
● “Ask, tell, ask” is a useful general communication
strategy.
● Each child and family has a different style and set of
expectations regarding communication and making
decisions, and clinicians need to clarify and work with
these styles and expectations.
● Emotions play a vital role in communication—and
are often the most important substance being communicated.
● Asking a child “What makes you happiest?” can be a
gateway to many important conversations.
● Asking a parent “What do you need to do to feel like
you are being the best parent you can be for your
child?” can likewise open up deep lines of discussion.
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MACK, FEUDTNER, AND HINDS
and listens to them, and will continue to be there as the
illness evolves. These relationships develop organically and
in diverse directions, rather than following a prescribed
path. Nevertheless, clinicians can foster such relationship
with questions and behaviors that engage the child and
parents in teaching the clinician about who they are.
Most importantly, this work is fostered by listening.
Children especially may not always wish to talk about issues
related to their illness, but sometimes, they may leave the
conversational door ajar. Clinicians who are patiently and
consistently listening are more likely to detect and use that
opening. Furthermore, by listening, clinicians reassure children
and parents that their words have meaning.
Questions can help build relationships, and often have
dual roles: they allow the child and family to express
themselves, and give clinicians information that helps them
to provide the best possible care. Posing these questions
and listening to the answers does not necessarily require
much time; sitting by the bedside for a few minutes at the
end of the day may suffice to learn about one or two of these
issues, and reinforces the message that those in the room
are valued.
What kind of a person are you? How would you describe
yourself? These questions unfold across multiple conversations,
with many possible prompts: “What are you proudest
of ?” “How do you like to be thought of ?” “Where do you find
strength and support?” The goal is to learn about this child,
and this family, as unique individuals. Early conversations
(about family members, school, and interests, for example)
may evolve over time into deeper ones about spirituality
or the meaning of illness (“Do you ever wonder why this
happened to you?”).
Tell me about a time when you were the happiest. This
question has particular value in getting to know the child
as a person. Children with cancer share a lot of tough times
with their medical team. This question allows them to share
what is good and meaningful to them, which is good in itself,
for the child, family, and clinician. Additionally, this can
aid clinicians in conversations about care when treatment
options have failed—“Remember when you told me about
...?Iamwondering if we can find our way to more times
like that.”
How does communication work in your family? How do
you want it to work? Asking this question shows respect for
the family system, which may be influenced by cultural
values, past experience, and the unique ways that a family
comes together around a child’s illness. Asking questions
and listening are the best tools to understand these differences.
Some families have very different preferences from
those of the clinician; for example, a family may wish to
exclude an adolescent patient from conversations about the
diagnosis. By asking at the beginning, the clinician can
learn what matters to the family and start a conversation
about how to proceed. A plan that works well for everyone
requires ongoing conversation, but this question reminds
families and patients that their preferences are paramount.
As you think about the future, what do you worry about the
most? Worries about the future are nearly universal at the
time of diagnosis, yet often go unspoken. This question
allows the clinician to acknowledge these difficult emotions.
Unrealistic worries can be corrected, and reasonable worries
can be recognized, understood, and met with empathy. This