The field of pediatric palliative medicine has undergone significant growth in the last decade. Palliative care services were once only considered appropriate for children who were imminently dying, but are now recognized as vital to the care of those with complex potentially life-threatening conditions. Hospitals that care for the approximately 55,000 children who die each year in the United States have an obligation to provide excellent pediatric palliative care.1-3 Although palliative care is becoming standard of care in many hospitals, on average only 10% of pediatric patients who are eligible receive palliative care.1 A recent survey by the Center to Advance Palliative Care found that although 69% of hospitals caring for children had a pediatric palliative care program, the staffing and scope of programs varied widely.4 Healthcare professionals find this domain of practice extremely difficult and referral for services is sometimes delayed or omitted. This chapter addresses the core challenges of providing palliative care, supplying practical and, to the extent possible, evidence-based answers to these challenges.
Palliative care seeks to maximize quality of life for patients and families through an interdisciplinary approach to minimize distressing or uncomfortable symptoms that patients experience and maximizing the quality of their remaining lives, while providing support for decision making concentrating on aligning treatments with family and patient goals of care. These services are provided across the care continuum and across care locations in conjunction with disease-directed therapies. Collaboration and communication among patients, families, and healthcare professionals is essential.
IDENTIFYING PATIENTS WHO REQUIRE PALLIATIVE CARE
Figuring out which patients and families would benefit from palliative care, and when, is challenging for two main reasons. First, the prevailing medical model presents palliative care as a mutually exclusive alternative to curative care. This is a false dichotomy: patients can simultaneously receive care that seeks to cure disease or extend life while also receiving complementary care that seeks to minimize bothersome symptoms and maximize the quality of life (Figure 10-1). Second, among the approximately 55,000 children who die each year in the United States,5 several trajectories of dying exist, including6:
Children who die suddenly, before any diagnosis is made (e.g. due to trauma or conditions such as sudden infant death syndrome or occult cardiac arrhythmias). These families warrant bereavement care.
Children whose conditions are inevitably fatal. This group can be subdivided into the following groups:
Patients who will inevitably die relatively quickly after diagnosis (e.g. nonviable prematurity, inoperable brain tumor). All of these patients warrant palliative care immediately.
Patients who will inevitably die, but years to decades after diagnosis (e.g. many neurodegenerative disorders). These patients warrant palliative care, but when to institute such care is debatable. We believe that, along with life-extending care, complementary palliative care and advanced-care planning should be initiated at the time of diagnosis.