A LIFE WORTH LIVING
Nick Tullier’s case highlights moral questions surrounding care of brain-damaged patients
Therapists and nurses draped Hawaiian leis around their necks as they entered. A pineapple-shaped piñata dangled from a string in the corner of the sixth-floor rehab room. Sitting on a table at the center: a cake decorated to look like a beach. It was Nick Tullier’s 42nd birthday. “Nick, why aren’t you wearing it?” his speech therapist, Carissa Ngo, said as she lifted a coconut bra off the table.
“He said no,” his fiancée, Danielle McNicoll, responded, feigning disappointment.
Through a series of head gestures earlier that week in May, Nick had consented to a luau-themed birthday party. He had agreed to invite TIRR Memorial Hermann staffers who’d spent months helping him recover. He’d even agreed to wear a Hawaiian shirt and a lei.
But he wasn’t going to put on the bra.
“Fine, Nick,” Ngo said, wrapping a paper-grass skirt around her waist. “I’ll be the hula girl.”
“Smile,” Danielle said, snapping a picture of them. After six months together, the staff had begun to seem like family.
Nick yawned. Then someone said, “Are you ready to do the piñata?”
A year earlier, on Nick’s 41st birthday, he and Danielle had been on a cruise through the Caribbean. It was a chance to get away, just the two of them. To leave the stresses of work behind and to talk about their future. They had decided they would get married the following summer, once Nick’s youngest son graduated from high school.
She had considered him her fiancé after that, but in truth, Nick never officially proposed. After the shooting, Danielle had found a picture of an engagement ring on his phone, along with messages to a friend revealing his plans to surprise her at Christmas. At that moment, she’d silently said yes to a question she hadn’t yet been asked, and now she was living out vows before she’d had a chance to take them.
In sickness and in health.
“All right, Nick, grip it tight,” said Kelly Betts, a physical therapist, as she helped Nick wrap his fingers around a plastic stick.
Ngo dangled the papier-mâché pineapple in front of him.
“Push it down, Nick,” Betts said. “Hit the piñata.”
At TIRR, therapists never miss a chance to work in extra therapy. Nick moved the stick, swinging it slowly with one hand, until it made gentle contact with the pineapple.
“Good job,” Danielle said, as he prepared to do it again.
After a few more whacks, it was time to sing and cut the cake.
For the first time since being shot in the head, shoulder and stomach in July 2016, nearly a year earlier, the birthday boy was going to get a small taste of frosting.
A few weeks earlier, Nick’s rehab physician, Dr. Sunil Kothari, delivered opening remarks at a brain-injury conference in Galveston. The nation’s leading experts in the field had gathered to discuss the legal, ethical and moral challenges of treating patients teetering on the edge of consciousness.
Kothari began with a statement he hears frequently at TIRR: “My husband wouldn’t have wanted to live like this.”
That phrase grew in popularity in 2005, after Terri Schiavo — a severely brain-damaged Florida woman — became a national symbol for how not to die. A decade after she’d collapsed and gone into cardiac arrest, starving her brain of blood and oxygen, her husband wanted to remove her feeding tube. Her parents, and then later the government, fought to keep it in. In the end, a federal court ordered the hospital to remove it, but not before public sentiment swung sharply in favor of those advocating “death with dignity.”
Thousands signed advance directives or living wills that year, legal documents that stipulate when physicians should stop medical intervention after a serious injury. People had seen the images of Schiavo, who was believed to be in an irreversible vegetative state, and decided that was no way to live.
But what if she had been minimally conscious, instead?
“That’s the question we have to grapple with,” Kothari told the scientists gathered at the Moody Gardens Hotel.
Families are almost always thrilled when they arrive at TIRR and learn loved ones are still aware, even if that means only being able to track objects with their eyes. But as months
or even years roll by, when patients don’t get better, relatives begin to wrestle with existential questions:
Is that a life worth living? And who decides?
Is it right to remove a feeding tube or a ventilator from someone who might, on some basic level, be aware of what’s happening?
The question has breathed new life into an old debate. Right-to-die groups argue that prolonging the life of someone found to be minimally conscious is even worse than keeping a vegetative patient alive because he or she may be suffering but unable to communicate it. Disability rights advocates, on the other hand, argue that withdrawing life support from people with severe brain injuries is akin to pulling the plug when someone is born with a cognitive delay.
Diane Coleman, president of the Chicago-based disability rights group Not Dead Yet, said the question becomes where to draw the line. “There’s been this rush to judgment and to embrace a message that says, ‘You’re better off dead than disabled.’ ”
The debate almost certainly will reach into courtrooms and state legislatures in coming years, but until it does, Kothari said, “we are operating in an area of legal ambiguity.”
“We can’t wait for the law to catch up to these situations,” he said. “We can’t wait for ethicists to agree. We can’t wait for the health care system to be reformed. We have to help families make these decisions now.”
Kothari has sought to reframe the conversation when he counsels families. Instead of dwelling on someone’s quality of life — a metric that seems to focus on physical ability — he asks them to consider whether a minimally conscious loved one might find meaning in life.
As an example, he cites the experiences of paraplegics. The vast majority say they are happy to be alive. That holds true even among those who’d previously said they would rather die than be paralyzed.
“We’ve learned that we can’t rely entirely on statements patients made before the injury,” Kothari said. “Because nobody can truly say how they’d react to a situation until they’re in it.”
Some of his patients take pleasure in simple things, he says: feeling the sun on their skin. Listening to music. Watching television. Being around to see children grow up.
The question families have to ask themselves: Is that enough?
By summer, Danielle was growing desperate to hear Nick’s voice.
She had spent months coaxing him to speak. A few hours each week, a music therapist, Amy Marroquin, would come by the room with a guitar and strum songs Nick was sure to know while Danielle and a speech therapist tried to get him to sing along.
Do you remember when, we used to sing …
“Sha,la…la…la…la…la…la … la … la,” Danielle would sing in a slow, patient voice, coaching Nick to extend his tongue with each L sound.
You say goodbye, I say …
“Helloooooooooo,” she would prompt, using her hands to help Nick form a circle with his mouth.
They tried to make me go to rehab, I said …
“Noooo … noooo ... noooo.”
Nick’s dad, James, bought Danielle a ukulele so she could learn to strum a few songs and sing to him during the countless hours they spent alone. Some days, Nick appeared to be on the verge of saying something. He’d open his mouth and move his tongue or form a circle with his lips, like he was going to complete the Beatles lyric. Then, on June 5, he did. “Hello, hello,” Danielle sang in a short video she recorded that afternoon.
Nick opened his mouth, but no sound came out.
“Hello, hello.”
Seconds passed.
“Hello, hello.”
Nick opened his mouth again, and this time managed a faint “hello.”
Later, when Danielle posted the clip on Facebook, she captioned it, “Our miracle today!”
A month later, around the anniversary of the shooting, Nick was hurting.
The exit wound in his abdomen had never fully healed. Nurses cleaned it daily, but the infection kept returning. Nick had already endured 14 surgeries to repair his mangled midsection, most of them before he arrived at TIRR. Now he was about to undergo one more.
Medical setbacks are common among people with severe head injuries. As their brains heal, other problems flare up, stunting an already fragile recovery. Limbs become too spastic to move. Saliva, trickling freely through an open windpipe, triggers repeat bouts of pneumonia. Abnormal bone growth, a common brain-injury side effect, causes elbows, knees and hips to lock up in pain.
When surgeons at Houston Methodist hospital opened Nick’s abdomen on July 12, they cleared a blockage in his intestines that had probably been the source of his frequent digestive pains, and they repaired two seeping holes in his digestive tract that had likely prevented the exit wound from closing.
Doctors thought the operation would finally rid Nick of the lingering pain.
A few hours afterward, he suffered a seizure. His temperature and blood pressure spiked. What should have been days of recovery stretched into weeks. Nick seemed uncomfortable and disoriented, even after he’d returned to the familiarity of his room at TIRR.
Night after night in July and August, Danielle stayed awake at his side, comforting him as he moaned in his sleep. She’d lay down for a few hours during the day while Nick’s parents guided him through his therapy sessions.
He wasn’t able to do as much in the weeks that followed. There were no new breakthroughs. He had stopped playing thumb wars with Danielle, stopped smiling so much when she was in the room, was no longer able to finish the lyric when she sang: You say goodbye, I say …
Not all of Kothari’s patients get a miracle.
By the time Adam Lenz arrived here two years ago, it had been 16 months since his pickup slipped off the jack at his home in St. Louis, crushing his chest and cutting off blood flow to his brain.
His pregnant wife, Britain, had rejected a doctor’s subtle suggestion to remove him from life support, and three months later, she carried a 3-day-old newborn into the hospital to meet his unresponsive daddy, hoping to inspire a flicker of awareness. It didn’t, but she didn’t give up. She found out about TIRR’s disorders-of-consciousness program, but their insurance company refused to pay for treatment hundreds of miles away.
When Britain finally managed to check Adam in to the program in the fall of 2015 — a significant medical expense funded entirely through charity — his muscles had locked up so tight from lack of movement that therapists struggled to pry his arms from his chest.
It took Katherine O’Brien, the neuropsychologist, about a month to figure out the
36-year-old carpenter was conscious. If a therapist held his left arm steady to take weight off it, Adam was able to move his hand on command, turning it in for “yes” and out for “no” to answer basic questions. Yes, he was a man. Yes, he had children. No, he wasn’t from Illinois.
Britain was amazed but also horrified.
Adam had spent most of the previous year on his back in a nursing home, taking meals through a tube. Had he been in pain? Had he noticed when more than a few days passed between her visits with the kids? She thought of what he had told her, just months before the accident, when she’d asked what he would want if something ever happened to him.
“If I knew I wasn’t going to get better,” he had said, “I wouldn’t prolong it.”
Adam did get marginally better during his three months at TIRR. But he still wasn’t himself, not even close. When he got back to St. Louis, there wouldn’t be any rehab facilities with the expertise to help someone in his condition. Before she finalized arrangements to return him to a nursing home with hospice care, Kothari urged Britain to ask her husband what he wanted. Adam might feel differently now, he told her.
She agreed. O’Brien did the asking:
“Adam, do you want to live like this?”
After a few prompts, he seemed to move his hand in, for yes.
“Do you want to die?” No response. “Are you happy you’re alive?” He answered “yes.” And then “no.”
They asked the question a dozen different ways over the course of several days, but half the time, Adam didn’t respond, and when he did, his answers were inconsistent.
Maybe he wanted someone else to decide. Maybe his brain couldn’t process something so serious.
At least they’d tried, Britain thought.
Soon after returning to St. Louis, Adam began to regress. His muscles tightened. His arms twisted against his chest. He stopped tracking people as they moved through the room. Every time Britain visited, the figure in the bed seemed less like her Adam.
Then, six months later, while she was visiting family in Tennessee around the second anniversary of the accident, Britain got a call from one of his nurses. Adam’s feeding tube had come out. They’d tried to reinsert it, but it wasn’t working. He would have to be transferred to a hospital.
Britain hung up and prayed. She thought about the outgoing, adventurous Adam she’d fallen in love with. The man who’d turned out to be such a good dad, so full of energy, always on his feet, always moving.
He’s already gone, she thought to herself.
After a few minutes, she called the nursing home back and told them not to transfer him. Then she called Adam’s family and asked them to go be with him. That afternoon, Britain sat in the backyard where they had gotten married, and cried.
She felt a sense of peace, she said, a confidence that she doesn’t believe she would have felt if she hadn’t gotten Adam to TIRR.
She knew she had done everything she could.
In those initial days after the shooting last year, when the shock was still fresh, Danielle had sat in the intensive care unit in Baton Rogue, La., reading through old text messages from Nick.
She felt a chill when she found one he’d written earlier that summer, after a sniper shot a dozen police officers in Dallas, killing five. He’d told her he was angry that cops had been targeted, but he refused to go to work fearing for his life.
“I promise that if and when that time should come, I won’t die easy,” Nick had written. “Until God pulls my spirit up, I won’t die easy.”
Danielle thought about that text often, now more than a year later, as Nick recovered from his latest surgery. She reminded herself of it as he groaned in pain and struggled to respond to prompts. I won’t die easy.
The changes were subtle at first, beginning about a month after the operation. Nick’s blood pressure and white-blood-cell count finally stabilized. His muscles seemed to relax, too, as tension drained from his shoulders. His exit wound appeared to be closing. The pain was fading.
After that, Kothari said, “It was as if a light clicked on.”
By late August, Nick was communicating easily again. His smile was back. He regained command of his left arm. By September, he learned to kick his leg when a therapist rolled a ball toward him. He started eating puréed food off a spoon. He finally sipped a frappuccino.
One night, out of nowhere, he laughed at something silly Danielle said. A deep, belly laugh, that made his shoulders quiver and her heart flutter.
On one of the first cooler days of fall, a hospital team escorted the couple to the Houston Zoo, Nick’s first nonmedical outing since the shooting. “Our hot date,” Danielle had called it. Nick smiled in nearly every picture.
Now, he was smiling again, one afternoon in early October, as he practiced walking around the track in TIRR’s rehab gym. An overhead support line held him upright. Two therapists crouched next to him, gently supporting each leg as he kicked his feet forward, not inches at a time but whole strides.
“Good, Nick,” Danielle said as he took a step.
She stood facing him, holding each of his hands, coaching him to come toward her.
“Come on, Nick. Kick that leg.”
Step.
“That’s it, Nick. All the way.”
Step.
“As big as you can, Nick.”
Step.
There’s still no telling how much Nick will recover. Nobody can say whether he’ll ever be able to speak more than a word or two at a time, or ever get to dance with his bride at their wedding. Even if he does those things, how much of his personality will remain intact? Will his memory and intellect be sharp? Will he still be Nick?
For now, at least, he was moving in the right direction.
Danielle lifted the brim of his baseball cap and drew closer to him on the rehab track, until her face was inches from his.
“Come on, Nick,” she whispered. Step. “Come toward me.”
Step.
“Don’t stop.”
Step.
The workout session at times had the feel of a celebration. In a few days, Nick was going to be discharged and moving to the coast. He’d been accepted into the Transitional Learning Center in Galveston, or TLC, a residential rehab facility for brain-injured patients who aren’t ready to return home but who no longer require around-the-clock hospital care.
After 11 months, his time at TIRR was coming to an end. Danielle kept reminding him.
“We’ve got to get you ready to walk on the beach, Nick.” Step. “Wheelchairs don’t do well in the sand.” Step. After one lap, his therapists led him to a bench and helped him sit. Time for a short rest, one of them said. Danielle sat next to him and leaned her head against his shoulder. This wasn’t the life she’d imagined, but in the countless hours she’d spent quietly caring for a man incapable of thanking her, something unexpected had happened: Their bond had grown even stronger.
Danielle leaned over to kiss him on the cheek. Then Nick turned to look at her and smiled. It wasn’t the wide grin he’d flashed the day they met.
To her, it meant so much more.
EPILOGUE
Two weeks after he was transferred to Galveston — just as Danielle was learning her way around the residential rehab facility and Nick’s therapists were getting to know him — the company that manages his insurance plan sent notice that it was cutting him off.
Hines & Associates, the Illinois-based health care management firm that makes benefits decisions for members of the East Baton Rouge Sheriff ’s Office health plan, determined Nick no longer needed inpatient rehab or around-the-clock nursing care. The decision was made by clinical experts based on “the latest evidence-based guidelines,” as required by federal law, a company representative said.
Danielle doesn’t know anything about those guidelines; she knew only that Nick had been making progress, and now because of some bureaucrat hundreds of miles away, that progress might stop.
“It shouldn’t be this hard,” she vented in an online post.
Nick was being downgraded to 10 hours of rehab a week at an outpatient clinic back home in Baton Rouge, and she and Nick’s parents would have just two weeks to find a place for him to live.
Nick was still fighting, Nick’s father, James, said afterward, so they were going to fight, too.
They appealed the decision, protested in social media and contacted journalists for help. Following the public outcry, insurance officials agreed to let Nick receive his 10 hours at TIRR’s outpatient clinic in Houston — far fewer than he’d been receiving as an inpatient but better than nothing — and they agreed to give them more time to figure out a plan before cutting off payments to Galveston.
Then the family put out another plea for help.
A Houston police officer who also had been shot in the line of duty and his wife offered to let Nick and Danielle live for free in their rental home, a short drive from TIRR. A Louisiana-based contractor volunteered to make the home handicapped-accessible. Hundreds of strangers donated thousands of dollars to help pay for the renovations and eventually purchase a van to transport Nick.
On Thanksgiving, Danielle dined on cafeteria food and worked on plans for their eventual move back to Houston, still unsure how soon they would have to go. In the morning, she posted a video on Facebook of Nick giving a thumbs-up — a sign of his continuing progress — and later that day, a photo of the two of them together.
In the picture, Nick’s head leaned toward hers, and he was smiling.
Above it, she wrote: “What else could I possibly ask for?”