APRIL 25, 2016
Protect Children with Disabilities Now!
The American College of Pediatricians supports the proposed Missouri and Kansas state 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, adults and children with disabilities can and do experience positive, inspiring lives that need not be judged by the state.
It is first and foremost a physician’s job to present objective medical facts while acknowledging any uncertainties. The physician must ‘do no harm’ and should be able to support patients and families in difficult circumstances. As a patient’s condition declines, physicians should discuss and reach understandings with the family regarding potential interventions and prognosis. This is how the doctor-patient relationship should proceed in all pediatric cases regardless of survivability; this is what Simon’s Law will codify. Other states are encouraged to adopt similar legislation.