Children who have special health-care needs: ethical issues.

Introduction Nearly one in five children in the United States has special health-care needs, including chronic medical conditions and developmental disabilities that require care well beyond the needs of children who are developing typically and are in good health. For a minority of such children, these needs are multiple and complex, requiring significant help from health professionals and the use of medical technology in the home. Raising and caring for children who have special health-care needs (CSHCN) require substantial time, knowledge, and commitment on the part of families and professionals alike, as well as willingness to grapple with unique and complex ethical issues. Many of the topics in bioethics that the American Board of Pediatrics (ABP) (1) has determined that its diplomates should master are germane to the care of CSHCN. These issues include decision-making in special medical circumstances regarding critical care, the limiting of nonbeneficial interventions toward the end of life, the pediatrician’s role in allocation of health-care resources, and the patient-parent-pediatrician relationship and other subtopics in professionalism. The Section on Bioethics of the ABP offers an extensive annotated bibliography. (2) Issues Faced by Parents, Families, and Caregivers Duties and Obligations The duties and obligations of families to care for CSHCN dominate their day-to-day responsibilities. Their efforts can lead to triumphs that bring pleasure to the entire family and at other times can be so burdensome as to reach crisis proportions. Despite the support they receive from an array of community-based services, personnel, and technological advances, families find that the responsibilities of raising CSHCN at home far exceed those associated with raising typically developing, healthy children. (3) The enormity of such obligations may constrain families’ capacity to nurture their children as fully as they wish. Families raising CSHCN often find that they must sacrifice attention to siblings, limit their own employment opportunities, forgo recreation and respite, and make other choices that undermine family stability.