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Palliative care is a model of interdisciplinary care that seeks
to improve the quality of life of patients and their families facing
the problems associated with life-threatening illness. This care
includes the prevention and relief of suffering by promptly identifying
and treating pain and other problems, whether they are physical,
psychosocial, or spiritual.1,2 To assist in identifying
and addressing these sources of suffering, interdisciplinary pediatric
palliative care teams often include a palliative care physician,
advanced practice nurse, chaplain, social worker, and child life specialist.
Hospice and Palliative Medicine is now a recognized medical subspecialty with
trained medical experts. The preceding chapter (Chapter 125) discusses
many of the principles of communication and care employed during hospice
and palliative care. This chapter is more focused on the practice
aspects of the development of a care plan.
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Disease Trajectory as
a Guide to Timing of Palliative Care
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Different illness trajectories (or expected life trajectories)
guide the timing of incorporating the principles of palliative care
into clinical management.3,4
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Life trajectory categories appropriate for palliative care consultation
include the following: (1) Those where treatment is possible but
may fail such as neoplasms not responding to conventional protocols,
stem cell transplant, organ transplantation (see Fig.
126-1). (2) Those requiring intensive long-term treatment aimed
at maintaining the quality of life such as progressive respiratory failure
(eg, muscular dystrophy or cystic fibrosis), requiring assisted
ventilation (see Fig. 126-2). (3) Those with
a severe disability causing vulnerability to health complications and
characterized by recurrent illness, hospitalizations, and decline
in health and function.
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Palliative care consultation can be useful for counseling and
symptom management at any time in such children’s life
trajectory. Specific symptom management strategies are discussed
later in this chapter.
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Families of children with a diagnosis in which cure may not be
possible are ideally introduced to palliative care at the time of
diagnosis.7 Palliative care as a resource can be introduced
to parents by acknowledging the shared hope that their child will
have the intended benefit of treatment available while honestly
reflecting that not every child receives the hoped-for benefit.
A brochure highlighting information about palliative care can be
included along with the other materials that teams provide to families.
Palliative care teams and programs can also be seamlessly integrated
into medical teams providing care for oncology patients, patients
awaiting transplantation, and other teams providing care to high-risk
children.8
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In contrast, children with severe ...