Symposium explores Baby Doe Rules 25 years later
ATLANTA–When should medical treatment be provided for a seriously ill infant? What if aggressive treatment causes enduring pain? And what happens if doctors and parents disagree about whether treatment should be given?
These are just a few questions that have been debated in medicine for more than 25 years, ever since the Reagan administration issued the “Baby Doe Rules” in response to the case of a Bloomington, Ind., infant with a reparable birth defect who was allowed to die without surgery.
The Baby Doe Rules, which will be the focus of the 2009 Georgia State University Law Review Symposium on Friday, Feb. 13, condition the grant of federal funds for any state’s child protective services program on the assurance that it can respond to reports of medical neglect. Those reports may include the withholding of medical treatment from disabled infants with life-threatening conditions.
“The early controversial cases involved infants who had relatively straight forward medical needs,” said Georgia State Law Professor Charity Scott, director of the Center for Law, Health & Society in Georgia State’s College of Law. “By contrast, the hard cases today often involve extremely premature infants — at the cusp of viability, at 22 or 23 weeks gestational age when born — who have multiple medical needs. Other hard cases today involve infants who have severe genetic abnormalities that can cause significant permanent physical and mental impairments. Doctors and parents struggle with whether or how a child’s uncertain prognosis for the future should impact their decisions about treatment.”
Advances in medical technology over the past 25 years have played a significant role in improving the health outcomes of infants who may have died because effective treatment was not available a generation ago.
“Should aggressive treatment be given, and for how long? Some difficult questions affecting that decision include: What’s the likelihood that an infant’s treatment will be successful? Will it cause suffering? How long can the infant live with treatment? What will the infant’s quality of life be in the future? Whether the anticipated future quality of life of an infant should be taken into account in deciding whether to treat the child remains a controversial issue. And who should be the final decision-maker in conflicted cases is a perennial dilemma,” Scott said.
From bioethicists to lawyers and doctors, more than a dozen experts from across the United States will lead discussions on the evolution of the Baby Doe Rules and the current status of decisions involving premature and other medically at-risk infants at the symposium themed, “The 25th Anniversary of the Baby Doe Rules Perspectives from the Fields of Law, Health Care, Ethics, and Disability Policy.” Among the distinguished experts are Burke Balch, director of the Robert Powell Center for Medical Ethics; Dr. Mark Mercurio, director of the Yale Pediatric Ethics Program and an attending neonatologist at the Yale-New Haven Children’s Hospital; and Dr. Robert Truog, a professor of medical ethics at Harvard Medical School.
At the conclusion of the symposium, which is being held in partnership with the Emory University Center for Ethics and the student-led Law Review, participants will better appreciate the roles of parents, health care providers and the government in treatment decisions for extremely ill newborns; learn ways of resolving conflicts over the care of very sick newborns, including mediation and communications skills; and understand how principles from different perspectives, influence and interact in decision making regarding treatment. The Georgia State University Law Review will publish a symposium volume on the topic in spring 2009.
“The Baby Doe Rules raise very complex legal, medical, ethical, and policy issues,” Scott said. “The symposium is honored to host the nation’s leading experts in all of these fields. It is an extraordinary opportunity in our community to come together to engage in multidisciplinary reflection and thoughtful debate about these controversial issues in the care of seriously ill infants.”
For more information, visit the symposium Web site: http://www.babydoesymposium.org/.
Contact: Leah Seupersad