The American College of Pediatricians supports legislative efforts to pass bills dubbed, Simon’s Law – designed to guarantee parents their inalienable right to participate in the healthcare decisions of their disabled or severely ill children. Once inconceivable, the practice of hospital staff placing a Do Not Resuscitate (DNR) order on a child’s chart, without the informed consent of the child’s parents or legal guardian, is on the rise.
Medical decision-making is increasingly predicated upon the ill-defined and subjective concept of “quality of life.” While a life with one or more disabilities may be considered intolerable by some, there are many children and adults with disabilities who believe otherwise, as do their families.
It is first and foremost a physician’s job to offer medical facts together with hope, and over time, if hope for survival becomes unwarranted, then physicians should discuss and reach understandings with the family regarding prognosis and interventions. This is how the doctor-patient relationship should proceed in all pediatric cases; this is what Simon’s Law will codify. All states are encouraged to adopt similar legislation.