Adam Whiteley, MD, Critical Care Medicine, received a $15,000 Summer 2025 Fellowship Award through the CM Clinical Fellow Research Awards program. The award is for his project, “ECMO: An Exploration of Informed Consent and How Parental Experience Can Guide the Process,” and covers a project period of Oct. 1, 2025-May 31, 2027.
Extracorporeal membranous oxygenation (ECMO) is the highest level of life-support treatment. Over 1,100 pediatric patients have undergone the treatment through the ECMO program at Children’s Mercy. While ECMO can be lifesaving, this type of life support can also be high-risk for adverse effects. Children’s Mercy also offers extracorporeal cardiopulmonary resuscitation (eCPR) — a procedure where ECMO begins during or after CPR has been administered. This procedure can be lifesaving but could also result in complex chronic conditions that parents may not fully understand prior to consent.
Medical personnel attempt to receive informed consent from a child’s family prior to beginning any type of treatment, however, it is believed that due to the urgency and complexity of life-saving measures, informed consent is difficult to obtain prior to putting a child on ECMO. Dr. Whiteley said the parental and family experience with ECMO is not well studied with the last major study having occurred approximately 30 years ago and no studies have looked at the informed consent process itself.
Dr. Whiteley plans to learn more about the parental experience during ECMO treatment of pediatric patients to determine the best approach for the consent process.
“We aim to characterize the components of informed consent that are important to families in the provision of ECMO, the results of which can inform not only how we carry out the process here at Children’s Mercy but also at institutions worldwide who provide neonatal and pediatric ECMO,” said Dr. Whiteley. “Additionally, in gathering feedback from families on their experience, we hope to contribute to existing parent focused ECMO guides so that they can hear from other parents and families who have faced what they are going through in having a child supported on ECMO."
Ásdís Finnsdóttir Wagner, DO, Pediatric Intensivist, Critical Care Medicine, will serve as a mentor for this project with additional support from a multidisciplinary oversight team including Cara Holton, MD, Pediatric Intensivist, Critical Care Medicine; Katherine Macmillan, MD, Pediatric Critical Care Medicine; Kari Davidson, MSN, RN, CCRN, Director, Extracorporeal Support Department; John Daniel IV, MD, MS, Associate Medical Director, Neonatal Intensive Care Unit, Medical Director, Neonatal Extracorporeal Membrane Oxygenation (ECMO); and Kelstan Ellis, DO, MSCR, MA, FAAP, Section Chief, Bioethics.