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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.

Disease Trajectory as a Guide to Timing of Palliative Care

Different illness trajectories (or expected life trajectories) guide the timing of incorporating the principles of palliative care into clinical management.3,4

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.

Figure 126-1.

Children with cancer awaiting organ transplant, or with severe developmental impairment. Hope for the best, prepare for the rest.

Figure 126-2.

Children with severe developmental impairment prognosis and uncertainty: Hope for the best, prepare for the rest.

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.

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

In contrast, children with severe disability often have ...

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