Caring for Gravely Ill Children
1 The Departments of Pediatrics and Epidemiology & Social Medicine, Albert Einstein College of Medicine & Montefiore Medical Center, Bronx, NY
2 The Hastings Center, Briarcliff Manor, NY
3 Department of Epidemiology & Social Medicine, Albert Einstein College of Medicine & Montefiore Medical Center, Bronx, NY
4 Vice President for Medical Affairs, The Children's Hospital, Boston, MA
5 Department of Psychiatry (Pediatrics), Massachusetts General Hospital, Boston, MA
6 Department of Pediatrics, Stanford University School of Medicine, Stanford, CA
7 Department of Women's & Children's Health, School of Nursing, The University of North Carolina, Chapel Hill, NC
8 Department of Pediatrics, Children's Hospital Medical Center, University of Cincinnati, Cincinnati, OH
9 Department of Surgery (Pediatrics), Olive View Medical Center UCLA School of Medicine, Sylmar, CA
10 Department of Pediatrics, University of Texas Medical School of Houston, Houston, TX
11 Department of Pediatrics, Stanford University School of Medicine, Stanford, CA.
Background. Much has been written about the care of the hopelessly ill adult, but there is little guidance for pediatric health care professionals in the management of children who are critically or terminally ill.
Methods. Through a 3-day meeting in Tarrytown, NY, attended by a group of pediatricians and others directly involved in these issues, a principled approach was developed for the treatment of, and health care decision-making 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 as great extent possible, consistent with developmental maturity, in the decision-making process. Quality of future life should be viewed as being relevant in all decisions. Parents are believed to be the natural guardians of children and ought to have great latitude in making decisions for them. However, parental discretion is not absolute and professionals must maintain an independent obligation to protect the child's interests.
Conclusions. Decision-making should be collaborative among patient, parents, and professionals. When conflict arises, consultation and ethics committees may assist in resolution. When cure or restoration of function is no longer possible, or reasonable, promotion of comfort becomes the primary goal of management. Optimal use of pain medication and compassionate concern for the physical, psychological, and spiritual well-being of the child and family should be the primary focus of the professionals caring for the dying child.
Key Words: decision-making • quality of life • parental discretion • adolescent autonomy • end of life in children
Submitted on October 5, 1993
Accepted on February 15, 1994
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