CARING FOR GRAVELY ILL CHILDREN

Background. Much has been written about the care of the hopelessly ill adult, but there is little guidance for pediatric health care profess ionals in the management of children who are critically or terminally ill. Methods. Through a 3-day meeting in Tarrytown,NY, attended by a g roup of pediatricians and others directly involved in these issues, a principled approach was developed for the treatment of, and health car e decisionmaking for, children who are gravely ill. Results. The group agreed that the needs and interests of the child must be the central focus of any treatment plan and that the child should be involved to a s great extent possible, consistent with developmental maturity, in th e decision-making process. Quality of future life should be viewed as being relevant in all decisions. Parents are believed to be the natura l guardians of children and ought to have great latitude in making dec isions for them. However, parental discretion is not absolute and prof essionals must maintain an independent obligation to protect the child 's interests. Conclusions. Decision-making should be collaborative amo ng patient, parents, and professionals. When conflict arises, consulta tion and ethics committees may assist in resolution. When cure or rest oration of function is no longer possible, or reasonable, promotion of comfort becomes the primary goal of management. Optimal use of pain m edication and compassionate concern for the physical, psychological, a nd spiritual well-being of the child and family should be the primary focus of the professionals caring for the dying child.