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Improving Palliative Care for Cancer
rics, this is multilayered, involving the health care team, the parents, and the child patient. Models of care and reimbursement structures should value and recognize this.
Palliative care for children involves all-inclusive and compassionate care aimed at preventing and relieving suffering for those with life-threatening illness. Pediatric palliative care is family-centered care, with the child and family enwrapped in the center of a circle of professionals addressing spiritual, social, psychological, and physical needs. The prevalence of children living with active palliative care needs at a given time is estimated at 50 per 100,000 (Goldman and Christie, 1993).
Available resources designed for the care of adults with life-threatening illness do not fit the needs of dying children. Also, despite recent increases in interest in adult palliative care and hospice philosophy, a parallel increase in pediatrics has not occurred—80 percent of children dying with cancer in this country are still suffering, and their symptoms are not being adequately palliated (Wolfe, 2000).
Why are children with terminal malignancy suffering? First and fore-most, death in childhood is rare. As a result, medical, psychological, social, spiritual, and other practitioners for children are not likely to have much experience in palliative and terminal care. Then too, professionals providing quality end-of-life care to adults, including hospice staff, are not likely to have sufficient training to handle the complex physical, emotional, and psychological care of dying children and their families.
Children are not just small adults. The malignancies that afflict children differ substantially from the common adult cancers, and expectations of cure are much higher. These expectations for both families and treating professionals are realistically based on relatively better overall outcomes for children compared to adults with cancer (even for similar cancers). Heightened expectation of success leads to a reluctance of parents and health care providers to make a formal transition to non-cure-directed interventions.
Dying children defy the natural order, and pediatric providers are more likely to suffer a sense of failure when children die. Referral to an end-of-life program may be seen as abandoning hope, which may interfere with good communication and clinical care. Families and health care providers alike vary tremendously in their state of readiness for transition to an exclusively palliative approach in treating children, even when the definition of palliative care is well established and understood (Frager, 1996). Discussion of palliative care tends to be deferred, and an artificial distinction between curative and palliative care—when there should be continuity of care—is often made.
Communication across differing chronological ages, developmental levels, and decisionmaking capacities is a complex skill set to acquire and demanding to maintain. Children “have a right to be treated as developing