Abstract

Futile treatment. Do not resuscitate. These terms and the thoughts they evoke may be unfamiliar to families with ill children. Similarly, laws, such as the Americans with Disabilities Act or the Emergency Medical Treatment and Active Labor Act, are probably unfamiliar. Yet these terms and laws, and, more important, their implications, are part of a new world of health care into which more families are thrust—the world of wrenching and complicated decisions.Although the number of these situations is increasing and even predictable, the infrastructure of support services for families dealing with these medical decisions for seriously ill children has not been adequately addressed or developed. Parents know that some children are born with or develop serious illnesses and die. Amid absorbing large amounts of new information and interpreting the parameters and implications of what they are learning about their child's condition, families are forced by circumstances to assess—and to act on—their most critical, and perhaps previously unexamined, values.