All rights reserved. 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. 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.
What is more, families are asked to be full partners in medical decision making for their children without access to the full armamentarium of resources available to professionals and without support for their special circumstances. To order the full text of this article, please go to ordering .