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Chapter 92 Palliative Care 1489

Summary of the Institute of Medicine Report: When TABLE
TABLE Children Die: Improving Palliative and End-of-Life 92.2 Breaking Bad News
92.1 Care for Children and Their Families
1. Make yourself, the patient, and the family comfortable
Improve Organization and Delivery of Care 2. Find out what they know
Emphasis is placed on the development of care guidelines and 3. Indicate that you are planning to tell them something that is
protocols in all pediatric settings, the development of regional unpleasant and may be disturbing
information programs and resources in rural areas, and policies and 4. Find out whether they want to be told, or whether they want
procedures for involving children in decision making someone else to be told
Reform Financing of Palliative Services and Hospice Care 5. Find out how much they want to know (i.e., the big picture versus
all the details)
Vast changes in public and private health coverage: add hospice, 6. Tell them in words they can understand, allowing time for
change eligibility rules, provide outlier payments, extend coverage for questions along the way
counseling family members and for bereavement follow-up 7. Respond to their feelings
Better Prepare Health Professionals 8. Let them know that this is only the first of many discussions with
Create educational experiences and curricula that will provide basic and you
advanced competence in palliative, end-of-life, and bereavement 9. Ask them to summarize what they heard you say; ask if they have
care further questions
Strengthen Research Base for Effective Care 10. Arrange your next meeting with them
Emphases include appropriate quality-of-life measures, effective From Abrahm JL: Update in palliative medicine and end-of-life care, Annu Rev
symptom management, impact of perinatal death on parents and Med 54:53, 2003; and Back A, Arnold R, Tulsky J: Mastering communication
siblings, impact of sudden death on family and professional with seriously ill patients: Balancing honesty with empathy and hope, New York,
caregivers, efficacy of bereavement interventions, models for 2009, Cambridge University Press.
provision of care, financing alternatives, effective strategies for
educating professionals
From Institute of Medicine: When children die: Improving palliative and Breaking Bad News
end-of-life care for children and their families, Washington, DC, 2003, National
Academy Press. I just wanted to be told the truth and not too bluntly, but the truth
nonetheless. So that I could make a decision myself, be able to accept
it, decide what I was going to do about it.
Children with serious hematologic disorders have usually lived with — Adult cancer patient seeking a second-opinion
the illness over a prolonged period of months or years. Their knowl- hematology-oncology consultation 11
edge, understanding, and awareness of their precarious life situation
is often profound, at physical, cognitive, and emotional levels. Table 92.2 contains an outline of the suggested steps to take when
12
breaking bad news. For patients with advanced disease, the goal is
The doctors think my bone marrow is fine for now—and for now is to establish or strengthen trust, and reassure them that the physician
for now. is committed to caring for them even though their disease cannot be
— (8-year-old child) 7 cured. To do this well, physicians need to believe that they have not
failed the dying patient, even if medicine has.
The protective stance of the past stated that disclosure to the child
of his or her prognosis (and even, in some instances, the diagnosis)
would cause increased anxiety and fear. Since the 1980s, however, a Prognosis and Decision Making
10
shift toward open communication has been evident. To shield the
child from the truth may only heighten anxiety and cause the child Surveys of bereaved parents indicate that physician communication
to feel isolated, lonely, and unsure of whom to trust. about prognosis is not optimal. At the same time, emerging data
In communication with the life-threatened child at any juncture suggest that bereaved parents consider high-quality communication
in the illness, the precedent for a climate that enables such honest as the most important value when reflecting on physician quality of
2
interchange is created from the time of diagnosis. The individual care. Parents value clear information that is communicated sensitively
child’s competence and vulnerability serve as the context for decisions and includes the child, when developmentally appropriate. When it
regarding disclosure at any point in the illness trajectory. Consider- comes to discussing prognosis, a majority of parents want as much
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ations about what or how much to tell include the child’s age, cogni- information as possible. Furthermore, although many parents find
tive and emotional maturity, family structure and functioning, prognostic information about their child upsetting, they still want
7
cultural background, and history of loss. These same factors apply prognosis to be discussed. The data suggest, however, that parents are
at the end of life, with extreme sensitivity to how the parents have overly optimistic about the child’s chances of cure in comparison to
chosen to inform the child throughout the illness experience, how physicians, and this is especially true when the prognosis is uncertain.
the child has understood and processed information up to this time, Being aware of these trends may help physicians to discuss prognosis
and what the child is now asking—implicitly and explicitly—about with greater clarity.
his or her situation.
For adult patients with advanced cancer, having had a discussion One side of my head says: “Think optimistic.” The other side says:
about end-of-life wishes with one’s physician has been shown to cor- “What if this treatment doesn’t work?”
relate with less aggressive medical care near death, earlier hospice — (11-year-old-child) 7
referrals, cost savings at the end of life, and improved bereavement
2
adjustment for caregivers. Furthermore, having had conversations The child is often aware of the diminishing curative or life-prolonging
about end-of-life wishes is not associated with higher rates of major options that he or she faces. It is at this time that the child may ask
depressive disorder or more worry. Proactive, direct communication anxiously: “What if this medicine doesn’t work? What will you give
with patients and their families about approaching and managing the me next?” The child experiences a profound sense of loss of control.
end of life can be a satisfying and rewarding part of patient care. It is at this time that families are confronted with a series of decisions
However, more training in palliative care clinical and communication regarding the nature and intensity of medical interventions they wish
skills is needed during hematology/oncology fellowship and in con- to pursue. This process can be excruciating: they do not want their
tinuing medical education settings to ensure competency in these areas. child to suffer more, yet they often cannot tolerate the thought of