Through a J.E.D.I. Lens

Through a J.E.D.I. Lens (Vol. 1 Issue 2): Traumatic Brain Injury, In-Hospital Care & Socioeconomics

By Jálin B. Johnson, director of the Office of Equity & Inclusion at the Salk Institute
Featuring Eiman Azim, Salk associate professor, and Sharona Ben-Haim, associate professor of clinical neurological surgery at UC San Diego Health and adjunct faculty member at the Salk Institute

Potential clinical outcomes

TBI affects more than 5 million people each year, and severe TBI is a major cause of hospitalizations and deaths around the world.

In May 2024, Mass General Brigham investigators published the results of a study that determined that patients with brain injuries who died after withdrawal of life support may have recovered. This conclusion emerged from an analysis of potential clinical outcomes for traumatic brain injury (TBI) patients enrolled in the Transforming Research and Clinical Knowledge in TBI study. The team developed a scoring model that accounted for factors such as demographics, socioeconomics, and injury characteristics. They used this model to compare TBI patients for whom life-sustaining treatment was not withdrawn to individuals with similar model scores but for whom life-sustaining treatment was withdrawn.

TBI increases the risk for developing neurodegenerative diseases

With this in mind, I considered an assessment published in Frontiers in Neuroscience. In this study, titled Traumatic brain injury-associated epigenetic changes and the risk for neurodegenerative diseases, the researchers noted that “Epidemiological studies have shown that TBI increases the risk for developing neurodegenerative diseases. However, molecular mechanisms that underlie this risk are largely unidentified. TBI triggers widespread epigenetic modifications. Similarly, neurodegenerative diseases, such as Alzheimer’s or Parkinson’s, are associated with numerous epigenetic changes. Although epigenetic changes can persist after TBI, it is unresolved if these modifications increase the risk of later neurodegenerative disease development and/or dementia.”

I reached out to Eiman Azim, associate professor and William Scandling Developmental Chair at the Salk Institute, for insights on how critical motor functions are often affected by neurodegenerative disease and injury.

“Our ability to move through the world and interact with the environment feels natural and seamless,” Azim says. “Yet the complex processes by which the nervous system coordinates body movements are fragile and are particularly vulnerable to disease and injury. For effective therapy, it is essential to understand how neural circuits are affected by damage, and, critically, how we can intervene as early as possible after an injury or during the emergence of disease to more effectively promote recovery.”

Family decisions and financial ability

The Mass General Brigham researchers went on to acknowledge that “families are often asked to make decisions to withdraw life support measures, such as mechanical breathing, within 72 hours of a brain injury.”

While looking at this study through a justice, equity, diversity and inclusion (J.E.D.I.) lens, I centered the lived experiences of many families as they navigate what can undoubtedly be described as both challenging and life-altering. As noted in Mass General Brigham’s overview of the study, “predicting outcomes following a brain injury can be challenging, yet families are asked to make decisions about continuing or withdrawing life-sustaining treatment within days of injury.”

The socioeconomic barriers that some families face when determining exactly how long they can afford to maintain this critical support is a factor that must be considered when determining the best course of care.

Neurosurgeon Sharona Ben-Haim, associate professor of clinical neurological surgery at UC San Diego Health and adjunct faculty member at the Salk Institute, has seen this decision among the families of those experiencing TBI, time and again.

“When we speak to our patients’ family members in these critical moments, we ask them to make decisions not from their own perspective, but from the perspective of their loved ones, which can be a great challenge,” Ben-Haim says. “We must ask: what does this person determine as a reasonable, meaningful quality of life?”

When looking through a J.E.D.I. lens, we considered the following -

Writing in the Journal of Neurosurgery in 2021, Vanderbilt University School of Medicine researchers noted that “while clinical management was once thought to be the main determinant of clinical outcomes, the impact of pre- and post-hospital factors is becoming increasingly realized…The interplay between socioeconomic background and the psychosocial dynamic of the family unit can also be considered important pre- and post-hospital factors that should not be overlooked. For example, participation in intensive rehabilitation is highly correlated with better improvements in functional outcomes following TBI, but many uninsured families do not have access to these resources, putting them at an increased risk of poor outcomes.

• Should insurance companies be a mitigating factor in determining those for whom life-sustaining treatment is or is not withdrawn?
• While there have been numerous case reviews documenting the lifetime cost of TBI treatment, each varies depending on the amount of time care is being delivered to a patient. Is the healthcare system currently equipped to offer families financial options while considering long-term versus short-term care?
• According to the National Institutes of Health’s National Center for Biotechnology Information (2019), in-hospital treatment of patients with traumatic brain injury (TBI) ranged from $2,130 to $401,808. Families with various financial means from across the socioeconomic spectrum will be impacted differently by the decision of whether to keep a family member experiencing TBI on life support.