sensitive to family values and preferences but can work with families on how to inform and involve children and how to identify and respond to their concerns and wishes. As suggested earlier, failure to inform and involve children can lead to feelings of isolation and other distress. Further, it can prevent parents and clinicians from truly appreciating a child’s values, goals, and experience of his or her disease and its treatment and from using that appreciation to guide the child’s plan of care.
As discussed in this chapter and in Chapter 8, parents usually have the legal authority to make decisions for their child, but this is no way precludes the child’s involvement in discussions and decisions about their care. Chapter 10 notes that children’s “assent” to participation in research is normally expected but not necessarily required. Ethical issues may arise if children are led to believe they have choices when, in fact, their choices will be overridden if their parents disagree.
Not all suffering caused by life-threatening medical conditions or by the pursuit of cure or prolonged life can be prevented and not all goals of patients and families can be met. Nonetheless, if suffering or the potential for suffering is not even recognized or if the goals of care are not carefully considered, then opportunities to prevent or relieve distress and to protect quality of life for patients and families will certainly be missed. Regardless of choices about curative or life-prolonging treatments, advocates of palliative care stress—to clinicians, patients, family members, policymakers, educators, researchers, insurers, and communities—that care plans should always include steps to assess and prevent physical, emotional, and spiritual suffering. As described by the American Academy of Pediatrics in its statement on pediatric palliative care, “The goal is to add life to the child’s years, not simply years to the child’s life” (AAP, 2000g, p. 353).
Designing a care plan that appropriately integrates curative or life-prolonging care with palliative care and preparations for death is a sensitive and sometimes formidable task. Depending on the child’s medical condition, the plan of care may include a mix of preventive measures, curative or life-prolonging interventions, rehabilitative services, and palliative care. The mix usually will change over time as a disease progresses, as the goals of care are reconsidered and adjusted, and as the benefits and burdens of therapies are reevaluated based on guidance and counseling from physicians and others.
To illustrate, for a child with an eventually fatal condition such as