“Alive Inside”

Houston Chronicle  
December 04, 2017

Mike Hixenbaugh was new on the Houston Chronicle’s medical beat, learning his way around the Texas Medical Center, when he heard a rehab physician mention a statistic, in passing, that sounded too horrific to be true: Among the untold thousands of patients living in U.S. nursing homes and believed to be in a vegetative state following a severe brain injury, more than 40 percent are, in fact, minimally conscious — aware on some basic level but unable to easily show it. He decided to investigate further and learned the misdiagnosis rate had severe implications. It meant thousands of families each year were making end-of-life decisions based on bad information. And it meant that insurance companies were systematically denying rehab for tens of thousands of patients who had the potential to recover.

Plenty has been written about end-of-life decisions, especially after the Terri Schiavo controversy a decade ago, but Hixenbaugh had never seen or heard anything about the possibility that some seemingly unconscious patients might be aware, or that they could benefit from physical therapy. The national conversation around these issues had seemed to focus exclusively on the futility of life in a vegetative state, failing to consider the nuances of consciousness and the potential for recovery. The minimally conscious state became a formal medical status nearly two decades ago, yet, few have ever heard of it. Families in crisis don’t know to be skeptical of a vegetative diagnosis, because they don’t know there’s an alternative, and as a result, patients who have an outside chance to recover never get a shot at it.

Hixenbaugh spent hundreds of hours over the course of a year reporting the story. He read dozens of research studies, attended a national brain injury conference, interviewed several physicians and spent countless hours with patients with severe brain injuries and their families.

His biggest challenge was finding patients. The rehab hospital at the center of the narrative, TIRR Memorial Hermann in Houston, allowed access to Nick Tullier and his family but did not connect the Chronicle with other patients. Hixenbaugh scoured social media postings and news archives to find a dozen additional severe brain injury patients. Each story was unique, but they shared a common theme: Every family had been encouraged to remove life support before finally learning their loved one was conscious.

Focused on Tullier, a Baton Rouge sheriff’s deputy shot in the stomach, shoulder and head in July 2016, Hixenbaugh’s reporting became a startlingly vivid and emotionally wrenching four-part narrative series, “Alive Inside”:

Danielle McNicoll woke up around sunrise and checked the time on her phone. It glowed daily with Facebook notifications from strangers all over the country who had been keeping up with her finance’s recovery. How many of them had clicked “like” in February, when she posted a video of Nick Tullier taking his first steps since the shooting. He had needed help from three therapists, a walker and an overhead support line, but he had made it 42 feet that day, an inch or two at a time. How many had choked up, that same day, when she shared a photo of him standing with his arms draped over her? “I’ve longed for this hug more than I could ever explain,” Danielle had written.

In response to Hixenbaugh’s series, three experts in the field of severe brain injuries wrote op-eds, using Alive Inside as an opportunity to call for reforms in the way severe brain injuries are treated in America. A Houston Chronicle editorial called on Congress to study fixes to ensure more people who could benefit from rehab receive it. And one of the minimally conscious patients featured in the story, Mandy Coleman, was subsequently approved for additional home medical support after months of denials by insurance. For this ground-breaking journalism, we are proud to nominate Mike Hixenbaugh for the Headliners Showcase award.

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Submitted by Mizanur Rahman.