Bioethics for Breakfast: Charlie Gard and Solomon’s Dilemma: What are the limits of parental medical decision making?

Bioethics for Breakfast Seminars in Medicine, Law and SocietyHonorable Laura Baird, JD, and Marleen Eijkholt, JD, PhD, presented at the Bioethics for Breakfast event on September 28, 2017, offering perspective and insight on the topic, “Charlie Gard and Solomon’s Dilemma: What are the limits of parental medical decision making?”

Charlie Gard’s tragic life and death came to light in a UK case that garnered considerable worldwide media attention in July. To recall the basic medical details of the case, Charlie Gard suffered from an extremely rare mitochondrial DNA depletion syndrome (infantile onset encephalomyopathy). This results in a gradual weakening of all the muscles in the body, including the lungs, which is why Charlie had his life sustained by a ventilator since October of 2016 (he had been born in early August). In addition, he suffered multiple seizures in late 2016, which resulted in brain damage. In early March of 2017, Charlie’s doctors recommended the removal of life-support and that he be allowed to die. In their judgment nothing more could be done in Charlie’s best interest, as his brain and muscle damage were irreversible. His parents rejected the hospital’s recommendations. The parents had located Dr. Hirano at Columbia University, after surfing the web in late 2016, whose primary area of research was mitochondrial depletion syndrome. Dr. Hirano was prepared to offer an experimental treatment called nucleoside therapy, which had yielded some marginal benefit for children with a condition similar—but not genetically identical—to Charlie’s condition. Given Charlie’s massive brain damage, it was unclear whether he could feel any pain. What were Charlie’s best interests? Was that a judgment that only parents had an ultimate right to make? And what are the ethical obligations of physicians in cases such as this?

The discussion started with this case, but other cases were introduced that raised similar issues.

Honorable Laura Baird, JD
Judge, Ingham County Circuit Court
Laura Baird is an Ingham County Circuit Court Judge serving in the Family Division, where they decide child custody as well as related domestic issues, abuse and neglect, delinquency, paternity, name changes, guardianships, and parental consent waivers. Much of her professional life has been devoted to children and their families and trying to find the best outcomes for them. Prior to joining the Ingham County Circuit Court in 2001, Judge Baird served as a State Representative from 1995-2000 and participated in the enactment of the Family Court Act. Judge Baird and her husband are parents of three children; their middle child was injured at birth and rendered severely disabled, which caused them to experience many interfaces with pediatric medical care.

Marleen Eijkholt, JD, PhD
Assistant Professor, Center for Ethics and Humanities in the Life Sciences and Department of Obstetrics, Gynecology and Reproductive Biology, Michigan State University College of Human Medicine
Clinical Ethics Consultant, Spectrum Health System
Marleen Eijkholt focuses on a wide range of Ethical, Legal and Social Implications (ELSI) in health care ethics, including neurotechnology, reproductive medicine, clinical medicine and clinical research. Her work is eclectic like her background, including projects on stem cell research for spinal cord injury, deep brain stimulation, experimental treatments, placebos, and reproductive rights. She combines ethical, legal and philosophical theories in her research and scholarship. Additionally, she engages these in her professional life as an ethics consultant at Spectrum Health System. Marleen also contributes her expertise to the College of Human Medicine’s Shared Discovery Curriculum.

About Bioethics for Breakfast:
In 2010, Hall, Render, Killian, Heath & Lyman invited the Center for Ethics to partner on a bioethics seminar series. The Center for Ethics and Hall Render invite guests from the health professions, religious and community organizations, political circles, and the academy to engage in lively discussions of topics spanning the worlds of bioethics, health law, business, and policy. For each event, the Center selects from a wide range of controversial issues and provides two presenters either from our own faculty or invited guests, who offer distinctive, and sometimes clashing, perspectives. Those brief presentations are followed by a moderated open discussion.