2012 EDUCATIONAL BOOK - American Society of Clinical Oncology

question also sets the stage for formulating of goals of care,
which may address fears about outcomes.
After a relapse or serious complication, communication
can continue to affirm and deepen the relationship between
child, family, and clinician. Useful questions focus on the
emotional and existential experience of illness and hopes
and fears for the future, and allow children and families to
reflect on the child’s life and its meaning. Some examples
are below, although not every question is appropriate for
every child; as always, careful listening may help identify
good times for these conversations.
● Do you ever think about what all of this means?
● As you think about the future, is there anything that
you are especially afraid of? Is there anything that you are
especially hoping for?
● I know you have pain, but is there anything that is even
worse than the pain? 8
● Is there anything you’d especially like for your family to
know about you?
● How do you like to be thought of ?
Making Decisions
The third goal of communication, shared decision making,
is also relevant throughout illness. Starting treatment with
language based on goals of care can help to make the
transition to palliative care feel more natural. For most
children, the initial goal of treatment is cure. Yet evidence
suggests that parents consider palliation a priority even
during initial, cure-focused care. 9 Thus, we recommend making
goals an explicit part of all conversations about cancer
treatment: “As you think about your (your child’s) illness,
what is most important to you?” and “Aside from this most
important goal, what else are you hoping may be possible?”
Once goals have been identified, clinicians can respond by
framing care, including treatment options, in the context of
these goals. Rather than relying on parents to decide on
their own, clinicians may make recommendations about care
consistent with parents’ goals and values. For example, one
might say, “You just told me how important it is for her to
have a good quality of life. Given that, I wouldn’t recommend
intensive chemotherapy, because I am worried that she will
spend a lot of time in the hospital and the clinic, instead of
doing things she enjoys. I’d like to recommend that we offer
her any treatments we think may make her feel better,
but stay away from treatment that is likely to be difficult or
make her feel unwell.” In doing so, clinicians can join
parents in what may be very difficult decisions. Individual
parents have a wide range of preferences for involvement in
decision making, and preferred roles can change over time
as parental experience and the nature of decisions change.
Thus clinicians may wish to ask parents how they want
decision making to look, and work to support their preferences.
Starting Conversations Early
Conversations about prognosis and goals of care are appropriate
for all children with cancer and their families.
They address fears about the future, help clinicians learn
what the child and family consider important, and allow the
child, family, and clinician to know one another as people.
Clinicians can return to these discussions and, in doing so,
reassure children and their families that they matter, that
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they are known, and that their care team will do everything
possible to uphold their wishes.
Emotions and Communication
MACK, FEUDTNER, AND HINDS
In all conversations, emotions play several roles in shaping
the interaction. 10 First, emotions affect the way people
think and behave. Emotions like fear, sadness, anger, joy,
happiness, surprise, relief, guilt, shame, disgust, or contempt
(which constitute a core set of emotions that many
psychologists identify as primary emotional responses) orient
a person toward different aspects of a situation and color
their interpretation of it. Second, whether in the background
or foreground of any particular interaction, emotions are
part of what individuals communicate to each other, wittingly
or not: by a combination of word choice, vocal inflection,
body language, and other cues, people “show” how they
feel. Third, what people “show” each other may or may not
accurately reflect how they truly feel, and resultant misunderstandings
can profoundly alter the tone and outcome of
particular conversations and future interactions. Fourth,
when children are seriously ill, parents often have both
strong negative feelings (their child is so ill they are afraid
or angry) and strong positive feelings (they love their child
with boundless affection and pride), further complicating
the handling of emotions, communication, and decision making.
11
Because of these and other important effects of emotions
on communication, clinicians who care for children with
advanced cancer and their families must become aware of
and seek to improve their own emotional communication
skills. As yet, there are no well-established evidenced-based
“best practices” regarding the emotional side of communication;
12 acknowledging this, we recommend the following
techniques:
Keep tabs on your own emotions. Even before a conversation
begins, and periodically during the encounter, clinicians
should spend a moment focusing on their own feelings, and
name the emotions they have; labeling how one is feeling
helps in self-regulating the effect that emotions have on
one’s own thinking and behavior.
Engage in a common purpose. At the outset of the conversation,
after offering a personal greeting, work to quickly
establish with the patient and family what you are all trying
to get out of the discussion: “Thanks for meeting with me.
There are a few things I know I want to discuss with you.
What do you want to talk about, what would be helpful?”
Slow down. Often clinicians, feeling either time pressure
or the need to discuss lots of information, move the conversation
forward with at their own quickened pace. Slowing
down is a cardinal way to show empathy and caring. Even
if fewer facts are covered in a given period of time, the
emotional quality of the conversation is enhanced.
Listen and summarize. Observational studies of physicians
talking “with” patients show that physicians do most
of the talking, but that patients leave encounters far more
satisfied when physicians do less talking and more listening.
A particularly effective technique is for the clinician to ask
a question, listen for 30 seconds to a minute or two, then
summarize what has been said: “Okay, let me see if I heard
you correctly, you are most concerned about . . .”
Solicit permission. Before addressing topics that may be
difficult to discuss, solicit permission to do so: “There is