Research

Saint Joseph’s Summer Scholar is Changing How People View Informed Consent

A rising senior at Saint Joseph’s wants to change how patients and doctors discuss the potential benefits and drawbacks of a complex heart and lung procedure.

A young female doctor sits with a senior patient.

by Kevin Gfeller ’20

A patient with acute respiratory distress syndrome is admitted to a hospital in dire need of a lung transplant. Doctors recommend putting the patient on ECMO, short for extracorporeal membrane oxygenation, while looking for a lung donor. Joseph Kelly ’24, a biology major also minoring in healthcare ethics and theology, believes patients often do not understand the risks associated with this procedure.

Headshot of Joe Kelly
Joseph Kelly '24, a biology major minoring in healthcare ethics and theology

ECMO allows a patient’s blood to be pumped outside of the body to a heart-lung machine that removes carbon dioxide and sends oxygen-filled blood back to the tissues. This method lets the blood bypass the heart and/or lungs, allowing these organs to rest and heal. While this procedure can save lives, only 43% of adult ECMO patients survived to discharge between January 2009 and July 2014, according to one study conducted by The Journal of Heart and Lung Transplantation

Kelly and Peter Clark, S.J., PhD, professor of medical ethics and director of the Institute of Clinical Bioethics, believe that many patients and families cannot give informed consent for this procedure as they do not fully understand what ECMO entails. As a part of Saint Joseph’s Summer Scholars Program, Kelly is writing a research paper and developing a video that details the ins and outs of ECMO for patients to view. 

“Sometimes it works out perfectly for people,” says Kelly. “They get on a transplant list and maybe two weeks or two months later, they get a transplant and are living happy and healthy again. Other times people are put on the machine and something goes wrong after just a few days.” 

Kelly explains that if a complication happens while a patient is on ECMO, they could be removed from a transplant list and stuck in limbo. 

“You can’t just withdraw ECMO,” says Kelly. “Your heart and lungs may never start again on their own.”

This is why Kelly’s paper is titled “ECMO: A bridge to transplant or a bridge to nowhere.” Many families are left with a difficult decision when a complication occurs. Either they pay exorbitant amounts of money to keep their loved one alive or withdraw the machine and potentially let their loved one die. 

Father Clark always asks, ‘At what point are you no longer prolonging life, but actually extending the process of death?’ That is something we will run into a lot moving forward.

Joseph Kelly ’24

“People would be able to view this two-minute video before giving consent,” says Clark. “We can discuss [ECMO] on a fifth-grade level and explain the risks, benefits, alternatives and consequences. That way, people can truly give informed consent for this procedure.” 

Clark hopes that Kelly’s paper and video will continue to change how physicians are educated regarding informed consent. 

“I believe informed consent is what a reasonably prudent person would want to know,” says Clark. “Meanwhile, I think many physicians believe informed consent is what they believe a patient should know. That is where there is a discrepancy.”

Clark referenced one study that claims 90 million Americans are medically illiterate. While Kelly is excited about this project, he knows the idea of informed consent extends far beyond ECMO. 

“We should be informing patients about all procedures and technologies like this,” says Kelly, who plans to attend medical school after he graduates next year. “Life-sustaining technologies are only going to become more prevalent in the future. Father Clark always asks, ‘At what point are you no longer prolonging life, but actually extending the process of death?’ That is something we will run into a lot moving forward.”