Why advances in treating those with brain injuries require advances in respecting their rights

This article also appeared in the Huffington Post. 

Several years ago a father approached me, concerned about the care his son was receiving. The son had been in a car accident that left him with severe brain injury. He was placed in a nursing home, and his dad stopped by regularly to check in on him. The father feared his son was being ignored or, worse, left in pain or distress.

I could feel the love he had for his son – and his hurt. His boy was so vulnerable.

Over the past two decades, I have worked as an academic physician in the field of neuroethics, focused on advancing the care of patients with severe brain injury and bringing the fruits of neuroscience to a very marginalized population. I have chronicled my work, and that of my colleagues, in “Rights Come to Mind: Brain Injury, Ethics and the Struggle for Consciousness,” which was published by Cambridge University Press in 2015. To write that book, I interviewed more than 50 families who have been touched by severe brain injury. Their stories of incredible highs and lows take them to the edge of endurance. What they have told me would make you weep.

Yet now, with the last-minute passage of the 21st Century Cures Act in the prior Congress, there is something more we can do for patients with severe brain injury because it provides US$1.5 billion for brain research. Through the National Institutes of Health’s Brain Research through Advancing Innovative Neurotechnologies (BRAIN) Initiative, the 21st Century Cures Act can bring to life additional science for this underserved population.

The struggle for rehabilitation

Traumatic brain injuries account for 2.5 million emergency room visits each year. Nearly 90 percent are evaluated and released (for example, many patients with concussion), but almost 300,000 with more serious injury need hospitalization. For those who are most gravely injured, their journey can begin with brilliant, lifesaving neurosurgical care that would have been lost a few decades ago when I was a medical student.

In New York state, for example, death rates for severe TBI dropped from 22 percent to 13 percent from 2001 to 2009. Over that time, doctors began to respond to brain swelling more effectively by shunting off spinal fluid and even removing part of the skull to let the injured brain expand and then recover. These interventions have been a game-changer and saved countless lives.

But after gratitude for a life that has been saved, the truly difficult part begins. Patients and families face a slow-paced and often fickle recovery. Tragically, this phase is often made more challenging by the burden of poorly designed insurance coverage.

Read the article.

Joseph Fins, MD, is an Academy Fellows Ambassador and The E. William Davis, Jr. MD Professor of Medical Ethics and Chief of the Division of Medical Ethics at Weill Cornell Medical College.