GVSU expert: Prominent cases spotlight clinical ethics but singular focus remains on patient

Two separate medical cases in southeast Michigan involving families trying to stop hospitals from ending life support for teens have brought both important ethical questions and the role of clinical ethicists to the forefront.

A Grand Valley clinical ethics expert said while public scrutiny surrounding bioethics is common for the relatively young discipline, in practice clinical ethics is an individualized aspect of a treatment evaluation.

Jeffrey Byrnes, assistant professor of philosophy, said when the ethical considerations come with a high-profile backdrop of media attention, the ethicist's job is to concentrate on the case's individual characteristics while understanding how external factors such as media coverage, social media attention and emerging technology can shape the bioethics discipline in general.

"Ethicists are primarily concerned about the benefits and harms of individuals in cases in front of us. Those other cases teach us something, but ethicists tend to be focused on a single case," said Byrnes, who serves on the ethics committee of a local hospital.

"With the interplay of new technology and long-standing cultural factors, it is important for clinical ethicists to see the full palette. But I think ethicists are largely in agreement that it is important to identify the ethical questions about the specific case."

Byrnes said ethicists are called in to each consultation in the same way that a medical specialist would be. Individual cases vary as much as the patients and family members they encounter because of factors ranging from stages of grief to social media presence to family dynamics.

No matter the external influences, ethicists need to be able to listen to and empathize with patients and their loved ones, Byrnes said.

"We have to start by understanding where these families are coming from," he said.

In the two recent high-profile cases, parents in each instance have legally fought hospital medical staffs who determined there was no meaningful brain activity and that life support should be withdrawn. Doctors ultimately removed life support from a 14-year-old boy while the case involving a 16-year-old boy is ongoing.

Of the difficult questions these cases raise, a key one cited centers on the classification of "brain dead." 

"It is an official medical and legal designation that is medically accepted and that is legally codified in the state of Michigan," Byrnes said.

Ethical implications can emerge when hospital staff members have made that determination but treatment continues, he said.  "Anything that you do to prolong the suffering for someone who can't benefit from those treatments looks ethically problematic."

In these recent high-profile cases the patient's families have not accepted the brain death designation and continue to believe treatment would be beneficial, he said. 

Byrnes noted that families' reactions to a poor prognosis after a head injury vary greatly and can fluctuate. Some families are firm about whether or not doctors should continue life-sustaining efforts. Meanwhile, others who were at first adamant about life support eventually decide otherwise as the loved one's condition worsens. Ethicists work with other medical professionals throughout the entire process of assessing the patient and consulting with the family.

And of course, not all ethics cases involve decisions by family members for incapacitated patients. Sometimes ethicists find themselves advocating for patients who, for instance, decide to discontinue life-saving medications or treatments such as dialysis, or who refuse an amputation when faced with a life-threatening infection because they don't want to live without a limb, Byrnes said. 

The guiding principles for ethicists, according to Byrnes: A patient's dignity and autonomy, the relation of benefits to harms, as well as justice, meaning, are professionals treating this case as they would others.

Lending that perspective is key in considering the holistic view of a patient's case, Byrnes said. Ethicists necessarily trade in the gray of a situation.

"In some ways the ethicist allows the physician to be completely focused on protecting and saving the life of a patient," Byrnes said. "Then, at times, the ethicist can offer a contrasting voice that says, 'Maybe there are times to pull back.'"