Terri + 10

ELKINS PARK and NARBERTH, Pa.—At Moss Rehabilitation Research Institute on Feb. 24, a physical therapist stretched out the legs and arms of a military veteran who lay motionless on a hospital bed. Seven months earlier the 30-year-old had crashed his motorcycle and suffered a traumatic brain injury. He returned home for several months, but now rigid muscle contractions exhaust him.

In and out, up and down, side to side the therapist worked his fingers, arms, and legs under the watchful eye of the man’s mother, who quit her retail job to care for her son. “I used to hate going to work, but now I get to get up every day and take care of him,” she told me with a Bible and a book titled Examining Scripture Daily sitting on the table beside her. She called the last few months “an emotional roller coaster,” but, “He’s not depressed, so I can’t be either.”

MossRehab sits about five miles from the Huntingdon Valley, Pa., community where Terri (Schindler) Schiavo grew up. Following a 1990 heart attack that left her severely brain damaged, doctors diagnosed Schiavo as being in a persistent vegetative state. Her family fought the diagnosis and Schiavo’s husband, Michael, who sought to withdraw care upon receiving a large settlement intended for rehabilitation. The disagreement sparked an international controversy and political activism, but a Florida court eventually ordered Schiavo’s feeding tube removed on March 18, 2005. She died 13 days later.

Schiavo’s condition was not medically unusual, nor did the legal fight set new precedents, but the case’s visibility raised awareness about disorders of consciousness and the potentially heartbreaking consequences for families. Now 10 years later, researchers and advocates are touting the increasingly positive outlook for such patients. Specialists are discovering new ways to identify consciousness and developing advanced treatment options that offer hope to a generation of patients and their families who would have previously had little.

MOSSREHAB OPERATES one of less than 10 programs in the country that specialize in disorders of consciousness. Dr. John Whyte, the unit’s mild-mannered, 62-year-old director, has always liked tough cases, and he gets a steady stream of them. The MossRehab Responsiveness Program treats patients who are either in a vegetative state or a minimally conscious state—often after motorcycle wrecks, auto-pedestrian collisions, and an increasing number of heroin-related medical events.

Although experts and specialists have made significant advancements over the last decade, Whyte said most people who suffer a serious brain injury never see an expert. Once stabilized, many quickly transition to a nonspecialized nursing home, where a family practitioner or general internist will likely oversee their care. That leads to a high rate of misdiagnosis: “The fact that many patients, maybe a majority, get discharged directly from an acute care hospital to families or nursing homes—without passing through the hands of a specialist—is a problem,” Whyte said, pointing to two studies conducted years apart that found some 40 percent of all patients diagnosed as vegetative are minimally conscious.

‘It seems we spend tons of money, no questions asked, at the beginning, but then we give up when someone doesn’t make immediate progress.’ —Dr. John Whyte

The difference between a vegetative and a minimally conscious state is crucial: In all 50 states it’s legal to withhold food and hydration from persons doctors believe are permanently unconscious—but not if they’re minimally conscious. Most insurance companies don’t consider someone a candidate for rehab unless the person regains consciousness. It may take only occasionally wiggling a finger on command to establish minimal consciousness, but it can open a world of opportunities.

Coexisting impairment causes many misdiagnoses—meaning a patient has, for example, both a language comprehension problem and vision loss. If someone fails to point to a cup when directed, it could be because he doesn’t understand the question, or it could be because he can’t visually find the cup. Much of the rehab work entails isolating problems and mining for the ultimate prize: a way to communicate.

The work is tedious. During my visit to MossRehab I watched an occupational therapist help a wheelchair-bound, minimally conscious man choose yes or no on an iPad. He repeated the exercise again and again, marking on a sheet each response. The patient kept dozing off—attentiveness is a common problem.

Across the room, another occupational therapist guided one dedicated mother through the process of transitioning her son from his wheelchair to a rehab mat. Her face betrayed the exhaustion of a mother whose son was hit by a motorcycle last year. She bumped his tracheotomy as she positioned to lift, causing him to throw up. Then he was exhausted, too.

ELSEWHERE I OBSERVED a test called a CRS-R (coma recovery scale-revised). It won’t document things like laughing or crying—which may or may not be considered reflexive—but it will gauge baseline skills and how they change over time.

“Point to the hairbrush,” a female physical therapist said to a middle-aged man who fell through a roof last summer. She held up a hairbrush and a handheld mirror. He didn’t move. After a few tries she placed the brush in his hand and asked him what to do with it. He slowly raised it to his ear. “I think I’ll count that,” she said, glancing at a colleague in the small room and noting he has trouble raising his arm any higher.

After marking an evaluation sheet, she moved on to another exercise: “Take the toothbrush,” she instructed, leaning down to put her face in his line of vision. “Take the toothbrush.” The man paused, then gingerly wrapped his beefy fingers around the toothbrush without shifting his gaze. She took the toothbrush back and asked him to grab it again. He did. Then he did it a third time. And a fourth.

“Way to go!” she cheered, beaming with excitement as she scribbled on the evaluation sheet. It was significant progress: The day before she hadn’t been able to get him to open his eyes.

A DOZEN MILES SOUTHWEST of MossRehab sits Narberth, Pa., a small, Mayberry-like community outside Philadelphia, where the Terri Schiavo Life and Hope Network operates out of a wood-shingled house converted into office space. Inside, the 700-square-foot office barely has enough room to display the mementos Schiavo’s family has collected over the past two decades: letters, awards, handmade quilts, photos with Pope Benedict, even a Purple Heart.

The Schindler family will never know what intense rehabilitation could have done for Terri, but they’re working to ensure other families get the chance to find out with their loved ones. Last year the organization was involved in almost 150 cases, providing support and information for families in difficult situations. “We do everything we can to protect those who are vulnerable,” Bobby Schindler, Terri’s brother, told me, noting that many times no one is helping patients improve.

Most often the Life and Hope Network’s assistance comes in the form of legal referrals—in its own network first, then to Alliance Defending Freedom (ADF) and the Life Legal Defense Foundation. Although sometimes cases involve intrafamily disagreements, usually families are battling hospitals and ethics committees to continue care.

ADF attorney Catherine Glenn Foster told me such conflicts are on the rise: “We used to get a couple of calls a month, now we get a couple of calls a week.” Foster said legal precedent allows some families to withdraw care, usually with a court order, but that’s different from an outside party deciding it’s time to give up. Sometimes more time is all they need.

In January National Public Radio profiled Martin Pistorius, a South African man who contracted an unknown illness, became locked in a fetal position, and spent a dozen years in what doctors thought was an unconscious state. But for the last decade Pistorius was completely aware of his surroundings. He remembers the relentless care of his parents, and also their frustration: “I hope you die,” his mother said one day, looking straight into his face. She had no idea he understood every word.

Eventually, a massage therapist named Virna became convinced Pistorius could improve, and she convinced his parents to take him to another facility for an evaluation. Even after they knew he was awake, doctors insisted he had the intelligence of a 3-month-old. They didn’t realize he had learned to tell time by watching the shadows and was exceedingly bright.

Today Pistorius is married, runs a web design company, communicates via speech computer, and is learning to drive. His story, which he recounted in a 2013 book, Ghost Boy, isn’t new, but its recent retelling sparked renewed interest—and some re-evaluations. “I now wonder how many patients with this kind of locked-in syndrome were allowed to die over the years,” Rivka Livni wrote in response to the NPR story, identifying herself as a nurse of 28 years who often saw staff encourage families to make a loved one “DNR” (do not resuscitate). “It will haunt me now.”

Whyte hopes his work will cause more people to reconsider their preconceived notions about disorders of consciousness. He and his staff don’t make moral judgments about what families should do, but they insist everyone should have proper information before making long-term choices.

He said that takes time: “The tremendous dilemma we have right now is those critical decisions happen early, but our ability to reliably predict long-term prognosis does not happen early. We cannot predict three days into an injury what the long-term prognosis would be.”

Research has shown traumatic brain injury cases have a better prognosis than those who experience a medical event, such as a stroke or heart attack. Whyte said that’s why treatment progress is slanted toward traumatic injuries, but there is reason for optimism among all serious brain injuries. Starting with a random discovery in 1999, patients with disorders of consciousness have been known to awaken with, of all things, the sleep-inducing drug Ambien, even many years into their illnesses.

From 2008 to 2011, Whyte led a four-year, 84-patient national study—the largest of its kind to date—to determine how patients may be able to benefit from zolpidem (the active ingredient in Ambien). He found more than 5 percent respond to the drug, but research hasn’t revealed the biological reasons why. Some patients also developed tolerance to the drug, if taken frequently. Whyte said the study left him less optimistic that zolpidem could be a super treatment, even for 5 percent, but the key takeaway is that some patients possess a reversible mechanism in their brain circuitry.

While it’s relatively cheap and easy to try a drug like Ambien, expert-administered rehab remains elusive for the vast majority of the roughly 200,000 to 300,000 Americans (there is no national registry) living with a disorder of consciousness. MossRehab’s responsiveness program handles about 25 patients a year. There are only a handful of other facilities that will take the most difficult cases, and convincing insurance companies to pay for it is almost always a challenge.

“It seems we spend tons of money, no questions asked, at the beginning, but then we give up when someone doesn’t make immediate progress,” said Whyte, citing a study that found as many as 20 percent of traumatic brain injury patients who receive early, aggressive rehabilitation may eventually live on their own. “The notion that there’s no potential for recovery, or if it doesn’t happen in the first few years we can close the door on it ever happening—those things are exaggerations.”

STAFF MEMBERS AT MOSSREHAB gather for 15-minute, afternoon meetings to discuss patient progress. On this day, some 10 health professionals provide updates and plan care for each patient: Whyte, an attending physician, a resident physician, an occupational therapist, a physical therapist, a speech therapist, a nurse, a neuropsychologist, one or two social workers, and a research assistant. Several staff members rotate in and out of the room as the conversation shifts to a new patient.

Some of the reports are grim. One patient isn’t making progress. Another has regressed. “How much more can we do for him?” someone asks. “How long will it take to train his mother?” says another.

The mood lifts for the final patient, who was hit by a car last November. He’s making notable progress: “Two times over the weekend he said, ‘Good morning,’” a physical therapist said, reading an email from a colleague who couldn’t make the meeting. Today he counted to four and answered a yes/no question. Excited murmurs of “wow” and “that’s huge” fill the room. The young man’s family may be able to take him home within two weeks.