Providing optimal medical care for children requires focusing not only on the what and how of treatment but also the why — the hopes, goals, and reasons that guide the decisions made by caregivers. Understanding the “why” of care, while always important, is especially crucial whenever healthcare providers and parents don’t see eye to eye on the best treatment approach for a child, or when considering the differences between cutting-edge therapy and clinical research.

The Department of Medical Ethics, established in 2008, works to ensure that all ethical decisions are made based on the soundest available evidence and practices, and to ingrain the habit of considering the “whys” of treatment into every aspect of patient care.

Led by Chris Feudtner, MD, PhD, MPH, the department works to make ethics more inclusive, proactive, teachable, and research-guided. Through this process, advances in the ethics of clinical care build upon an increasingly engaged staff and an ever-stronger evidence base.

Dr. Feudtner approaches medical ethics informed by his extensive research on the epidemiology and healthcare experience of children with complex chronic conditions. He focuses specifically on palliative, end-of-life, and bereavement care, as well as hospital inpatient care.

“Many clinical ethical dilemmas arise when healthcare providers and parents do not look at or feel about a child’s healthcare situation in the same way, resulting in fundamentally different views that would play out as different courses of action,” says Dr. Feudtner. “One aspect of the department’s research is aimed at understanding the best methods to facilitate discussions that advance mutual understanding and move care forward in the best direction.”

To this end, Dr. Feudtner and his colleagues are conducting research into the ethical issues related to end-of-life care decisions and the use of cutting-edge therapies, among other topics.

Some of the research conducted to date has focused on the psychological and “motivational structure” for human behavior, including understanding the preferences of parents, as well as differences in values and beliefs of families and healthcare staff.

Other ethical questions can include gift giving and the relationship between providers and family members, the allocation of scarce resources, and human subjects research.

“Through rigorous scientific methods we can develop evidence-based and robust forms of decision support to help our caregivers make sound ethical decisions,” says Dr. Feudtner.