2012 EDUCATIONAL BOOK - American Society of Clinical Oncology

there are commonalities as well. Clinicians may anticipate
these commonalities to include the parents’ desire to be
certain that their ill child feels loved by the parent, and that
the parent has been a positive role model, and has continued
to provide care and to meet the child’s needs, including
protection from suffering and maintaining vestiges of health
for as long as is possible. Finally, parents want to be certain
that they have made prudent decisions on behalf of their
children. Clinician recognition of the existence of this internal
definition and inviting parents to share their own
definition of being a “good parent” to their seriously ill child
will help parents to trust that the end-of-life decisionmaking
process includes thoughtful recognition of their
emotional well-being as parents.
Child participation in conversations. We find that not all
parents are comfortable with their child being included in
end-of-life decision making. Limited research supports the
ability of children treated for cancer to participate in such
discussions and, indeed, a preference for inclusion. A careful
exploration by clinicians with the parents regarding their
preferences for including their child is warranted before
initiating actual discussion with the child. In this clinicianparent
preparatory discussion, parents can identify the
terms they are comfortable using with their ill child so that
clinicians, parents, and the ill child can use the same
language to facilitate shared understanding of the seriousness
of the clinical situation. The process of “ask, tell, ask” is
very fitting for this preparatory phase of end-of-life discussions.
Although the research evidence is limited, the findings
that have been reported coupled with reported clinical
experience support the ability of children (age 6 and older)
to indicate their preferences for continuing or discontinuing
cure-oriented treatment. 23 Additionally, children age 10 and
older have been studied in terms of their stated preferences
for enrolling on a phase I trial, not implementing a resuscitation
order, or initiating terminal care. 24,25 These children
were able to state their reasons for their end-of-life prefer-
Authors’ Disclosures of Potential Conflicts of Interest
Author
Jennifer W. Mack*
Chris Feudtner*
Pamela S. Hinds*
*No relevant relationships to disclose.
Employment or
Leadership
Positions
Consultant or
Advisory Role
1. Miyaji NT. The power of compassion: truth-telling among American
doctors in the care of dying patients. Soc Sci Med. 1993;36:249-264.
2. Christakis NA, Iwashyna TJ. Attitude and self-reported practice regarding
prognostication in a national sample of internists. Arch Intern Med.
1998;158:2389-2395.
3. Mack JW, Wolfe J, Grier HE, et al. Communication about prognosis
between parents and physicians of children with cancer: parent preferences
and the impact of prognostic information. J Clin Oncol. 2006;24:5265-5270.
4. Back AL, Arnold RM. Discussing prognosis: “how much do you want to
know?” talking to patients who do not want information or who are ambivalent.
J Clin Oncol. 2006;24:4214-4217.
5. Back AL, Arnold RM. Discussing prognosis: “how much do you want to
know?” talking to patients who are prepared for explicit information. J Clin
Oncol. 2006;24:4209-4213.
6. Robinson TM, Alexander SC, Hays M, et al. Patient-oncologist commu-
642
ences, with the most commonly reported factor being concern
for loved ones such as family members and favorite
clinicians. Documented fears of children regarding end of life
include having pain and being alone. Assurances from parents
and clinicians about being available and determined to
help are of comfort to a seriously ill child.
Treatment team communication and dynamics. It is also
important to involve the child’s health care team in end-oflife
discussions and treatment decision making. Team tension
can emerge when members of the team do not feel
included in decision making. Patients and parents report
being able to sense team tension. Teams that establish time
to discuss end-of-life care options among themselves and to
review child and family preferences related to end-of-life
options may be able to prevent or diminish this kind of
tension.
Conclusion
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. Words and the
manner in which clinicians convey their concerns about the
ill child and about the family during the periods of diagnosis,
treatment, and transition, devoting themselves to supporting
patient and parental decision making, become sources
of substantial influence on child and parent responses to
challenging times. Clinician attention to this powerful skill
set will likely be a source of special and well-remembered
comfort for the child and family.
Acknowledgments
This study was supported in part by Grants No. R21
NR008634, R21 NR010026, and RO1 NR012026 from the National
Institute of Nursing Research, Cancer Center Support
Grant No. P30 CA21765 from the National Cancer Institute,
and an American Cancer Society Mentored Research Scholar
Grant.
Stock
Ownership Honoraria
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