Alive Inside

Mike Hixenbaugh’s story on efforts by a local hospital to restore patients with severe brain injuries won the AAAS Kavli award in 2018. Hixenbaugh is an investigative reporter focused on exposing fraud and abuse in health care. 

Danielle McNicoll wheeled her fiancé into his hospital room after physical therapy, then turned his power chair to face a mirror and ran her fingers through his hair. He never would have let it get this long, she thought.

“Are you ready for a trim, Nick?” Danielle said as she pulled out a set of electric clippers.

Nick Tullier stared back at his reflection, expressionless.

He still looked like the man she’d met four years earlier, when he was a regular at her salon in Baton Rouge, La. Nick, a sheriff’s deputy, would show up after his shift every other Friday, still in his uniform, and ask for Danielle by name. She started dressing up on days she knew he’d be there.

They flirted, dated, then fell in love. “I feel like there’s a big magnet between us,” she’d told him early on, “just drawing us together.”

Then, last summer, she thought she’d lost him. He and five others were gunned down by a former Marine and black separatist who had come from Missouri to Louisiana to kill cops. Nick was one of three who survived, but just barely. The doctors who saved his life told his family he would never regain consciousness. One suggested removing his feeding tube, to help speed the inevitable.

Now, nearly a year later, Danielle flicked on the clippers and moved them gently across Nick’s scalp, taking extra care as she trimmed the left side of his head, where a bullet had exploded through his skull.

“Nick is very particular about his hair,” she said a minute later, snipping a quarter-inch off the top with scissors.

She talks about him like that, in the present tense, but it’s impossible to know how Nick’s former thoughts and desires square with the man he is today. The Nick who survived.

When he arrived at this Houston rehabilitation hospital a few months after the shooting, a neuropsychologist quickly determined he wasn’t in a coma or a vegetative state, as previously thought, but was drifting in the netherworld between consciousness and brain death. He knew who he was and where he was but could do little to show it.

The revelation amazed Danielle and Nick’s parents, even if they weren’t sure what it meant. Doctors here, at TIRR Memorial Hermann, are among the best in the country at treating patients with so-called disorders of consciousness. But even they couldn’t say how much Nick, 41, would recover.

Would he ever talk again? Or walk?

He was fortunate to have made it this far. Thousands of people are discharged to nursing homes or acute care hospitals each year, assumed to be unconscious after suffering a severe brain injury. Experts now believe a staggering number of these patients — more than 40 percent, according to some estimates — are covertly aware, in what scientists have dubbed the “minimally conscious state.”

They are trapped inside themselves, mislabeled by physicians untrained in identifying subtle signs of consciousness and cut off from therapy by insurance companies unwilling to cover people seemingly damaged beyond repair. Some never even make it out of the intensive care unit, where doctors and nurses too often prod families to withdraw life support, apparently unaware of the brain’s ability to heal and rewire itself over the course of months and even years.

Dr. Joseph Fins, a medical ethicist who has spent decades working with severely brain-injured patients, calls their treatment “the civil rights issue you never heard of.” No one knows for sure how many people are mislabeled as vegetative, and therefore cut off from rehab, because no effort has ever been made in the U.S. to identify or count minimally conscious patients. One study pegs their number at as many as 280,000.

“Try to imagine it,” said Fins, a professor at Weill Cornell Medical College in New York. “Lying in bed, aware of your surroundings but unable to communicate, and nobody is talking to you. Nobody is working with you. It’s a horror story.”

With the right treatment, Danielle believes Nick will keep improving, little by little. That someday, she’ll hear his voice again and his playful laugh. She already feels like her best friend has returned to her, even if he can’t say so. Even if she’s doing all the talking, carrying on a perpetually one-sided conversation, determined to maintain their magnetic bond.

“He’s in there,” she says when people ask, refusing to acknowledge even the possibility of the alternative.

Danielle set the scissors aside and brushed clippings off his neck. She rubbed gel in her hands and slicked his hair into a spike — the way he likes it. As she backed away, Nick’s gaze suddenly locked on himself in the mirror, and for a moment, his mouth formed into a smirk.

It was subtle, not the wide grin he’d flashed the day they met, but for now, it was enough.

“See,” Danielle said, wrapping her arms around Nick’s broad shoulders, “we’re still cute together.”

By then, though, his smile had faded.

***

Ten months earlier. July 17, 2016.

Nick had told Danielle he didn’t want to go to work that morning. It was a Sunday, when they normally slept in and ate breakfast together. He was exhausted after days of responding to protests, part of the unrest that swept the country after a string of high-profile shootings of black men by police.

Danielle gave him a kiss as he headed out the door and told him to be safe, though, for once, she wasn’t worried. He was supposed to be patroling a sleepy section of town. A couple of hours later, she texted him: “I’m bored. Is it time for you to come home yet?”

By then, Nick was speeding toward a distress call: “Shots fired, officer down! Shots fired, officer down!”

He pulled into a parking lot near the scene of the violence and stepped out to inspect an empty Chevy Malibu. Then gunfire exploded from nearby woods.

The first bullet ripped through his stomach, shredding his intestines. As Nick toppled into his car, two more bullets hit him, one in the left shoulder, the other through his head, rattling his skull and filling his brain stem with shrapnel.

Another officer drove up as bullets whizzed by. He grabbed Nick, tossed him into his cruiser, then sped toward paramedics. Blood poured from Nick’s body as an ambulance raced him to Our Lady of the Lake Regional Medical Center.

On an operating table, his heart gave out. Doctors managed to revive him all four times he went into cardiac arrest, but in those critical minutes, his brain was starved of blood and oxygen, setting off a microscopic cascade.

At first, panicked cells in his brain would have released glucose reserves, providing energy to keep fragile neurons alive. After about a minute, those reserves would have been depleted, and brain cells responsible for regulating chemistry would begin to fail. When that happens, chemicals that normally facilitate brain function — potassium, sodium and calcium — are unleashed in toxic proportions.

As medics pressed on Nick’s chest that day, nerve fibers that carry electrical currents between regions of his brain — the pathways of consciousness — were collapsing in rapid succession.

By the time doctors stabilized his body, they believed, based on experience and training, that they had not done it fast enough to save his mind.

***

Danielle waited in a private room with Nick’s parents. At first, they knew only two things: Nick was alive, and at least a few other officers were not. The screams of their loved ones had echoed through the hospital.

Finally, after several hours, they were led into a recovery room. Nick’s head was wrapped in bandages, and his face was swollen. A ventilator pumped air in and out of his lungs. His eyes were closed.

The surgeons explained how they had stopped the bleeding from his abdomen and worked to ease the swelling in his brain. Despite their efforts, the doctors weren’t confident Nick would survive the night. “I’m sorry,” one of them said, before leaving them to cry and pray.

Nick was still alive the next morning, but that same doctor warned he probably wouldn’t live much longer.

After a week, when Nick had started breathing on his own, a neurosurgeon sat the family down and showed them scans of his damaged brain. Only a small number of people recover after a traumatic brain injury, such as a gunshot to the head, he told them. Even fewer get better after their brain has been starved of oxygen for more than a few minutes, what doctors call an anoxic brain injury, because that type of injury causes more widespread damage, affecting virtually every brain cell.

It was highly unlikely, the doctor said, Nick could overcome both.

Danielle and Nick’s family spent hours talking to him in the weeks that followed, checking his pupils, squeezing his hand, praying they would feel him squeeze back. Once, Nick seemed to move his arm. That’s just posturing, the doctors said. Later, Nick’s toes curled. A reflex of a damaged nervous system, they explained.

Danielle would sit at his bedside, quietly singing love songs, hoping for a flicker:

“So I’m gonna love you
Like I’m gonna lose you
I’m gonna hold you
Like I’m saying goodbye.”

One afternoon, Nick appeared to wiggle his toes in response to her voice. She asked him to do it again: “Nick, move your toes. If you can hear me, move your toes.”

He eventually did as she asked, or seemed to, at least. The doctors still weren’t convinced. Nick’s father, James, recalled that one, in particular, was especially pessimistic.

“I know your family needs to get together to discuss …” the doctor had said, after suggesting a life bound to a hospital bed and a feeding tube might not be one worth living.

James cut him off.

“Let me tell you something,” he said, raising his voice. “We don’t unplug.”

Danielle held Nick’s hand and shuddered: Had he heard that exchange?

***

A half century ago, there wouldn’t have been a plug to pull.

Dramatic improvements in intensive care in the 1960s led to a new class of patients: those whose bodies had been saved — kept alive with breathing machines and feeding tubes — but whose brains were believed damaged beyond repair.

Doctors discovered that an injured brain generally would shake off a coma — a totally unresponsive, eyes-closed state — within a month. Most patients then graduated into a state of “wakeful unresponsiveness” that neurologist Fred Plum, in 1972, named the “persistent vegetative state.” Those patients, Plum wrote, appear to be awake but are unaware of their surroundings.

The new classification forced people to begin contemplating questions without easy answers: What is a life worth living? And who gets to decide?

Three years later, a 21-year-old New Jersey woman downed too many gin and tonics — and maybe some Valium — at a friend’s birthday party. She passed out at her apartment, and by the time paramedics revived her, her brain had been starved of oxygen for at least 15 minutes.

After weeks of watching her stare blankly from a hospital bed, Karen Ann Quinlan’s parents made a gut-wrenching decision, one now repeated hundreds of times each day across the country: They asked to have her ventilator removed.

Hospital officials balked at the request, fearing repercussions from a county prosecutor who had threatened to bring homicide charges if they complied. The legal battle that followed went all the way to the New Jersey Supreme Court, which, in 1976, sided with the family. In its opinion, the court wrote that the state had no interest in forcing Quinlan to “endure the unendurable, only to vegetate a few measurable months with no realistic possibility of returning to any semblance of cognitive or sapient life.”

The case made national headlines, ushering in the rise of the right-to-die movement in the United States. It also cemented a view that has persisted for four decades: Severely brain-injured patients are, in many cases, better off dead. Consciousness became the legal and moral dividing line.

That outlook led physicians to rethink their longstanding philosophy of saving lives at any cost, and helped make palliative and hospice care mainstream in America, two movements that prioritize a patient’s comfort over medical intervention. It also caused clinicians and insurers to begin viewing many brain-injured people — patients such as Nick Tullier — as a class beyond hope.

“We assume they are not conscious, when often they are,” said Fins, the medical ethics professor. “We assume there’s no value in rehabbing them, even as there’s growing evidence to the contrary.”

Fins has given lectures to medical groups, testified before Congress and penned dozens of essays and a book calling for a radical change in how brain injuries are diagnosed and treated in America. The problems begin in the trauma center, he said, where well-meaning doctors are in a hurry to help families discern hope from hopelessness.

In a recent study of trauma-center outcomes in Washington state, researchers found that a third of patients who’d suffered an anoxic brain injury as a result of cardiac arrest had life-sustaining medical care withdrawn less than 72 hours after arriving at the hospital, long before anyone can accurately predict their likelihood of recovery.

Among those who died after having care prematurely withdrawn, the researchers estimated one in seven might have gone on to recover some level of functional independence. Nationally, the researchers concluded, as many as 2,300 cardiac arrest patients could be saved each year by waiting at least three days before removing life support. Thousands more could be saved by applying the same rule after someone suffers a stroke, or a traumatic brain injury.

“Without a doubt,” Fins said, “we are letting people die in the hospital who might otherwise recover.”

Among those who survive severe brain injuries, the majority are deemed vegetative and steered toward hospice, rather than rehab, said L. Syd Johnson, a neuroethicist at Michigan Technological University. The failure to correctly assess and diagnose such patients, she said, has led to “an acceptance that their right to die is their only remaining right.”

If consciousness defines who is and who isn’t a person, Johnson said, “then we have to acknowledge that we are wrong 40 percent of the time.”

Back in 1976, the hospital in New Jersey complied with the court’s order to turn off Quinlan’s breathing machine. But she didn’t die as the court had expected. Instead, she began breathing on her own. Her parents, devout Catholics, couldn’t bring themselves to remove her feeding tube after that.

They, like many who’ve followed, drew a distinction between withholding medical care and withholding food or water. Quinlan lived another decade, mostly tethered to a bed, before dying of pneumonia.

What might have been happening inside her brain all those years?

Scientists are only now beginning to understand.

***

Five weeks after the shooting.

Nick wasn’t showing meaningful signs of progress, at least not according to doctors in Baton Rouge. His family knew they needed to get him to a hospital more specialized in treating chronic brain injuries, but like most people in their situation, they had no idea where to turn.

On Aug. 23, 2016, President Barack Obama stopped in Baton Rouge to get a look at the city following historic floods there. James Tullier managed to arrange a meeting. His son’s story had become national news.

At the airport, James handed the president a note listing his family’s concerns and needs. Obama skimmed it, then called over his shoulder for his personal physician, Dr. Ronnie Jackson, a rear admiral in the U.S. Navy. Jackson, Obama told James, would make sure Nick got the care he needed.

By then, Danielle and Nick’s parents were convinced a miracle was unfolding. Nick had been moving his feet and toes more consistently. He’d squeezed their hands once or twice. He’d even blinked his right eye one time when they asked.

A couple of weeks later, the Tulliers had a decision to make. Jackson had recommended rehab facilities that specialize in treating patients like Nick. One was in Chicago, another in Houston.

They read everything they could about both hospitals and arranged calls with liaisons at each. They consulted again with Jackson, as well as Vice President Joe Biden’s personal doctor, before settling on TIRR Memorial Hermann, and a soft-spoken rehab physician named Dr. Sunil Kothari.

As they were finalizing arrangements to transfer Nick, James and his wife, Mary, pulled Danielle aside. For months, she’d barely left their son’s bedside. But she was only 23 years old. Not yet his wife.

“Danielle, Nick’s got a long road ahead of him,” James told her. “There ain’t nobody gonna be mad at you if you decide to stay in Baton Rouge.” A few days later, Nick was strapped into a small jet bound for Houston.

Danielle wasn’t far behind. She drove west along Interstate 10 toward Texas, unaware of the struggle ahead. 

You may read this story in its original format in the Houston Chronicle.