The doctor told her that her husband was just a vegetable now. “And he’s always just going to be a vegetable.” Did he really say it like that? Vegetable? And, just? Well, that’s how she remembers it. In his notes, the doctor wrote that his patient’s prognosis was “Poor/Grave.”
A few weeks earlier, on Oct. 4, 2024, while on a trip out of town, Aaron Williams said that his stomach hurt. Then he started vomiting and couldn’t stop, and then he started screaming. His wife, Tabitha, tried to drive him back home to Aiken, S.C. — and she was almost there, maybe 30 minutes away, when Aaron’s body stiffened and his limbs flung out and he went quiet.
At the hospital, Aaron, who was 30, was found to be in cardiac arrest. Doctors performed CPR, and when it did not work, they did it again and again; Aaron’s small, lithe body — just 5-foot-8, 135 pounds — heaved under the force of it, until after five rounds of compressions his heart started beating again. Doctors inserted a breathing tube and attached it to a ventilator next to Aaron’s bed. Sitting at her comatose husband’s side, Tabitha could hear its quiet mechanical hiss.
As it turned out, Aaron, who has Type 1 diabetes, had not been taking his insulin. Part of it, maybe, was hubris; he had been a diabetic since forever, and he thought he knew his body well enough to know when his glucose levels were really off-kilter. Also, he didn’t have a prescription; Aaron and Tabitha had recently moved, with five of their children, and he still hadn’t found a new family doctor who would take Medicaid.
Doctors did a CT scan, an electroencephalogram (EEG) and later an M.R.I., and they saw evidence of a global anoxic brain injury and “severe cortical dysfunction.” There was cerebral swelling too: so much that his brain pushed outward against his skull, partly flattening the folds and ridges that covered its surface. When he was examined, Aaron had no blink reflex, and he didn’t respond to sound.
Tabitha was told that his current state would be relatively short-lived. Real life wasn’t like a soap opera in which characters languished in comas for months on end; within a week or several, Aaron would either die or start to wake up. In the meantime, she should know that even if her husband were to recover, he might not recover in a “meaningful” way. Tabitha remembers a doctor explaining that the human brain is composed of distinct regions, and that in Aaron’s case, it was “the part of the brain that makes you you” that was damaged.
Eleven days after Aaron’s collapse, a palliative care doctor met with Tabitha and told her that she should have a “line in the sand,” some predetermined threshold beyond which she would not insist on aggressive treatment for her husband. It was up to her to decide where to draw it. She should think about what Aaron wanted — and if she didn’t know that, what she thought he would have wanted. And if she didn’t know that either, what she thought was best for him.
What he didn’t say aloud, exactly, was that Tabitha had what I.C.U. physicians sometimes refer to as “a window of opportunity” — a chance to let Aaron die quickly — and that it was about to close. Aaron was dependent on a ventilator to breathe, and this ventilation could easily be stopped. Many families chose to let go at this stage and, when they did, they felt as if they were just letting nature take its course.
But if Aaron were to keep living, he would require a feeding tube to be surgically inserted through his abdominal wall and into his stomach. Once that happened, letting him go would be harder. Then it would be a matter of stopping Aaron’s food and water and waiting for him to slowly die of dehydration and starvation. Theologians and bioethicists have long debated the difference between “withdrawing” ventilation and “withholding” food — how much moral distinction there is between them, if any at all — but clinicians know that families feel a difference. Withholding is harder. Once a feeding tube is placed, families tend to keep it there, and the patient keeps living in whatever state he’s in.
Tabitha wanted to give Aaron more time. It would be “murder,” she thought, to let him die if there was any hope at all — if not a single doctor could say, definitively, that there wasn’t. She told the doctor to order the feeding tube.
Toward the end of the month, Aaron opened his eyes. They moved around, pausing here and there. And then, Tabitha thought, they lingered on her face. He started making noises too. And he moved his head a little. Tabitha was euphoric until a doctor performed a bedside exam, meant to assess Aaron’s level of consciousness, and he scored poorly. Tabitha was told that he was not really awake, but instead in a “persistent vegetative state” (P.V.S.). Much of his brain was still terribly damaged, but his brainstem, which connects the brain to the spinal cord, had been spared, sustaining Aaron’s basic reflexes and his sleep-wake cycles.
The doctors said that Aaron was not aware and that he was not conscious. He could not think or feel anything, including pain. He could not see. And if he did seem to be squeezing his wife’s hand, this was only a grasp reflex. They told Tabitha that some patients in Aaron’s situation did improve and regain consciousness, but that many remained stuck in the vegetative state — or in a state of “minimal consciousness,” with fleeting periods of awareness and brief stretches of time in which they might stare with intention, or move a limb on command, or smile. It was impossible to know where Aaron would land. In the meantime, Tabitha should start looking into nursing homes.
Once Aaron’s eyes were open, Tabitha would not leave his side. “Wife was at the bedside,” “Wife asleep at the bedside,” doctors noted in Aaron’s file. “Wife asleep in chair at bedside.” Tabitha decided that she would spend this time reading as much about the vegetative state as she could. Almost right away, she came across news coverage of a study that had been published in The New England Journal of Medicine in August 2024, by Yelena Bodien and colleagues, less than two months before Aaron’s collapse. The paper described the results of a 17-year international, multisite study that examined 241 unresponsive patients with “disorders of consciousness,” each in a coma, vegetative state or minimally conscious state.
After reading the article, Tabitha felt disoriented. Although all the people described in the paper were “behaviorally unresponsive” during bedside exams, just as Aaron was — although they appeared oblivious and unreachable — a quarter of them were found, through advanced brain monitoring, to actually be conscious and able to follow high-level commands. They had “cognitive motor dissociation,” a disconnect between their conscious brains and their immobile bodies. They were what some researchers call “covertly conscious.” They were aware and they were listening. Tabitha imagined that Aaron might be listening, too. That he had been listening all along.
To Tabitha, the paper changed everything. She wondered why Aaron’s doctors had told her, unequivocally, that her husband could not think or feel. None of them had mentioned anything about the possibility that he could be listening.
The patients in the paper had all received advanced neural imaging, either a functional M.R.I. (fMRI) or an EEG, in which electrodes were placed on a patient’s scalp to detect tiny electrical signals beneath it, or sometimes both. Each person was then asked to do several cognitive tasks: to “imagine playing tennis,” to “imagine opening and closing your hand,” to “open and close your hand.”
Of the 241 patients, 60 appeared to do what they were told. When they were asked to imagine playing tennis, the brain area that controls motor planning lit up in the very same way that a healthy person’s brain would. When they were asked to imagine opening and closing their hands, it did the same. The patients were all severely brain-damaged — they had brains that, in some cases, looked too physically degraded to possibly sustain a conscious thought — but nevertheless, here they were: imagining themselves swinging a tennis racket.
Reading the paper, Tabitha learned that research into covert consciousness was not new — that the first time a patient diagnosed as being in a vegetative state was found to have hidden consciousness was back in 2006. But now a large-scale study showed how prevalent the condition really was: one in four.
By some estimates, around 50,000 Americans are in a chronic vegetative state, with another 200,000 to 400,000 in a minimally conscious state. If the paper’s findings were extrapolated, this meant that tens of thousands of them could, at that very moment, be covertly conscious but assumed to be unthinking. Just lying there, most likely in a nursing home that they would never leave. On the day of the paper’s publication, Nicholas Schiff, a professor of neurology and neuroscience at Weill Cornell Medical College and one of the study’s authors, told a New York Times reporter, “It’s not OK to know this and to do nothing.”
Exactly how conscious these people were was uncertain. Some researchers believed that even if the patients were conscious enough to imagine playing tennis, their way of being conscious was different, and diminished. Everyone seemed to agree that the patients were self-aware — that they could feel, that they had a grounding sense of being a someone who feels. But nobody knew exactly how much they retained of themselves: whether they knew themselves as a particular someone, or the someone they once were. It was impossible to know. In the view of these researchers, covertly conscious patients occupied a phenomenological gray space that was inaccessible to scientific probing and even to the human imagination.
But some researchers believed that at least some of the patients were largely intellectually intact. Of course, if this were true, it might also be true that those intact selves were suffering. Were some patients silently pleading to live, as doctors moved to withdraw their breathing tubes? Or longing fiercely for death, as feeding tubes were inserted?
Tabitha asked Aaron’s doctors if he, too, could have an fMRI scan and be asked to imagine playing tennis. But she was told that he could not. There were only a few places in the country that had the equipment and the software and the expertise to test for covert consciousness — and even in those places, the tests were almost exclusively done in the context of research trials. When Tabitha asked if Aaron could be enrolled in one of the trials, or transferred to a specialized facility that could do the testing, she was told that he could not do either. There was the science that she had read in that paper, but there was also the clinical reality, and the latter had not caught up to the former.
The more Tabitha read about the vegetative state, the less certain she felt about anything. “I’ve come to learn there’s a lot they don’t know,” she says. It wasn’t just that some seemingly vegetative patients were actually aware; it was also that the diagnosis itself was often wrongly applied. According to one widely cited statistic, about 40 percent of patients who were diagnosed as vegetative using standard bedside exams were actually minimally conscious. “Where else in medicine,” the bioethicist and physician Joseph Fins wrote, “would a diagnostic error rate of over 40 percent be tolerated?”
Patients could be misdiagnosed because they were sleeping, or delirious, or too heavily sedated at the time of their assessment, or because they couldn’t hear the doctors properly, or because they were injured or in pain. Or sometimes, because their bodies could not perform the specific task that a clinician had asked them to do — lift a finger, say — but could have responded had they been asked to do something else: to swallow or to wiggle a toe. At best, the clinical exams were rough measures. As a paper published in 2017 in the journal Neuroethics stated: Using these tools, even “competent physicians are currently unable to reliably distinguish between who is genuinely vegetative and who is in fact conscious.”
Other patients had probably started off in the vegetative state but then emerged into consciousness some weeks or months or years after their assessments — and without any doctor noticing. In her reading, Tabitha learned that even a terribly damaged brain can sometimes repair itself over time, regrowing the white matter fibers that connect nerve cells and allowing a disintegrated brain system to reintegrate.
This was more likely for patients whose brain injuries were traumatic in origin — car crashes, football tackles, bar fights — than it was for people like Aaron, whose damage was caused by oxygen deprivation. But even a brain like his could sometimes heal, at least part of the way. One meta-analysis showed that somewhere between 10 and 24 percent of patients diagnosed as vegetative eventually exhibited some degree of consciousness — and other studies showed that a small number recovered the ability to communicate reliably and intentionally, though this often meant something as simple as moving a finger for “yes,” and only in very rare cases involved complex speech.
There was, in fact, so much new evidence for delayed recovery that, in 2018, the American Academy of Neurology redesignated the “permanent” vegetative state as “chronic.” Use of the word “permanent,” the guidelines explained, “implies irreversibility, which is not supported by the current research.”
The vegetative state, as it turned out, was not fixed — though, practically, the label tended to stick. Tabitha learned that once a patient was diagnosed as “vegetative” and then admitted into a nursing home, it was almost impossible for family members to get a second opinion and a new diagnosis and then, maybe, though only maybe, a new insurance-company authorization and entry into a rehabilitation program.
Instead, when a family member, sitting at the bedside, reported the early flickerings of consciousness in a loved one, she was usually dismissed as seeing what she wished to see.
Tabitha never saw any of the doctors speak to Aaron. A few of the nurses did — they would wish him good morning, or explain that they were changing his hospital gown — but most didn’t. There was one nurse, she says, who exhaled loudly every time she entered Aaron’s room: a big, breathy, operatic sigh that perfectly communicated her impatience and contempt. Like: He’s still here?
It had been this way since he was given the vegetative-state diagnosis. Tabitha was told that, as a result of it, Aaron would not receive physical therapy or any other kind of rehab. For a while, she tried to give him therapy herself, or some approximation of it — moving his limbs around, one at a time — but eventually, she needed to go back to work, in the administration department of a local school. Now Tabitha worried about all the hours that her husband spent just lying there, his muscles atrophying from disuse, being treated by people who didn’t think he was really there at all.
In 2019, a local news outlet reported on the case of a 29-year-old Indigenous woman who lived at a nursing home in Phoenix. More than a decade earlier, the woman nearly drowned and had emerged into a vegetative state. But in December 2018, just after Christmas, staff members heard her moaning. It turned out that she was pregnant and in labor.
The moaning indicated that the woman was in pain, which meant that she was capable of feeling pain, which meant that she was not in a vegetative state at all — which possibly meant that she had been aware and in pain nine months earlier, when she was raped by a licensed practical nurse who worked in the building. Nobody noticed that the woman’s menstrual cycles had stopped or that her stomach had swelled enough to accommodate a healthy baby, much less that she was conscious, if perhaps sporadically.
A few weeks after Aaron first entered the hospital, he was discharged to a long-term acute care unit, where he was injured when a nurse misplaced his catheter and tore through his urethra. He was transferred to a nearby hospital, where he developed blisters across his chest and skin breakdown across his buttocks. At the end of February 2025, he was moved to a nursing home, where he stayed for just seven days before developing a pressure wound so deep, with so much dead tissue surrounding it, that he had to be transferred back to the hospital. Aaron’s feet had wounds on them, too; the inside of his left foot, near his long, yellowing toenail, was waxy and pink, like an uncooked chicken leg.
Tabitha worried that he could feel all of it — and that his doctors, presuming that he did not have the capacity for feeling, weren’t doing enough for him. Mostly, Aaron received acetaminophen and ibuprofen.
Still, Tabitha sometimes felt that her husband was improving. There were little things. His arms and legs seemed more pliable. He vocalized more. And he appeared to look sad when she left his room. It made her hate to leave. Once, Tabitha asked Aaron to open his mouth if he was in pain and to close it if he was OK, and he had opened it — though after a delay. Tabitha thought he might have progressed into a minimally conscious state.
When doctors refused to re-examine Aaron, Tabitha started making videos of their interactions. “Open your mouth one more time for me, Aaron,” she would coax. “Open your mouth, baby. Open your mouth. Aaron, open your mouth. There you go. There you go. Open it. Open it. There you go! There you go. So proud of you. So proud of you, baby. That’s what I’m talking about!” Once, Tabitha tried to show the videos to one of Aaron’s doctors, but she says he wouldn’t even look at them — that he literally turned his face away. “No further improvement noted,” doctors wrote in Aaron’s file.
A few months earlier, Tabitha had still believed that her husband was largely unaltered — that he was still “the guy I know,” just temporarily concealed by his injuries. But she had come around to the idea that if he were still in there, somewhere, he was changed. This made the question of what Aaron would have wanted — the question that Aaron’s doctor had asked Tabitha to consider — more elusive and maybe less relevant. What she really wished to know, now, was whether this new Aaron wanted to keep fighting.
After her trips to the hospital, Tabitha would sometimes write about what was happening, on a Facebook page for caregivers of people with anoxic brain injuries. One day, someone in the group told Tabitha that she should contact a man named Bobby Schindler, a patient advocate who helped people like Aaron.
Tabitha messaged Schindler through his website, and he called her the next day. He listened as if he really cared. Schindler told Tabitha that her hope for Aaron was right and just. That it was correct to resist the doctors’ appeals for “comfort care.” He offered to introduce Tabitha to a lawyer he knew, so that, in dealings with the hospital — for instance, if the hospital wanted to discharge Aaron to a nursing home before she felt he was ready — she could say, “My lawyer will handle this.” And Schindler seemed to understand everything that Tabitha was going through, because of what had happened to his sister, Terri Schiavo.
In the 20 years since he established the Terri Schiavo Life & Hope Network, Schindler has never advertised his services. “I think just the fact of Terri’s name is enough for people to find us,” he says. Most of the time, people wanted his advice. Or the name of a good lawyer. Or money. Almost everyone wanted more time. They called from the I.C.U. to say that doctors had started talking about comfort care, about organs.
Schindler would tell the callers what he had come to believe in the years since his sister died one of the most litigated deaths in U.S. history: that there might be hope for their loved ones. That they could fight hospital administrators. That the persistent vegetative state diagnosis was “subjective.”
Sometimes, a caller would tell Schindler that she had read articles online about how some brain-damaged people who seemed to be unconscious were really aware, and he would say that he had read the papers, too. For years, as his sister’s case dragged through the courts, Schindler and his family insisted that Schiavo was aware, even when so many people told them that they were deluded for thinking so. There was a strange alignment, Schindler thought, between the last 20 years of neuroscience and what he had always believed to be true about his sister.
Thirty-six years ago, in February 1990, Terri Schiavo collapsed in the hallway of her St. Petersburg, Fla., apartment. When paramedics arrived, the 26-year-old was in full cardiac arrest, but after seven attempts at defibrillation, they were able to restore a heartbeat. Weeks later, after Schiavo’s eyes opened, she was diagnosed as being in a persistent vegetative state.
It was modern medicine that made her and the thousands of other vegetative patients: the new machines and surgeries that saved the lives of severely brain-injured people, but only sort of. The 1950s and ’60s had brought the modern intensive care unit and, with it, mechanical ventilators. The ’70s brought neuroimaging techniques, like PET scans. Then, in the 1980s and ’90s, neurologists developed new surgical techniques to manage intracranial pressure. Once, many people with severe brain injuries simply hemorrhaged and died, but with these techniques, surgeons could use shunts to drain excess fluid from their brain. Or remove a piece of skull, allowing a swollen brain to temporarily expand. Back then, the physicians who pioneered these methods were sometimes accused, by colleagues, of creating outcomes worse than death — but then again, some patients were discharged from the I.C.U. and came back to thank the doctors who had saved them.
Around the time that Schiavo collapsed, young doctors were sometimes taught that the brains of vegetative patients were nothing more than “gelatinous gels.” The “persistent vegetative state” was formally defined only in the 1970s. And surgeons sometimes still performed medical procedures on those patients without anesthesia, on the assumption that they couldn’t feel. It was also common for philosophers to opine on the question of a vegetative patient’s personhood — and to come down on the side of the patient’s being a nonperson, and thus lacking the moral status held by everyone else. To be a person, they argued, required more than a beating heart. It required certain capacities and characteristics, though nobody could agree on exactly what the requisite ones were: the capacity to feel; to be self-aware; to reason; to remember; to have interests; to value life.
In the beginning, everyone in Schiavo’s family was united in their belief that she would get better. But then, famously, the family split. After years of failed treatment, Schiavo’s husband, Michael, wanted his wife’s feeding tube removed. He believed that keeping her body alive was a harm and an indignity, even if it was one that she could no longer feel. On numerous occasions, he said, his wife had told him that she didn’t want to be kept alive on machines.
Her parents, Robert and Mary Schindler, disagreed. The Schindlers were Catholics who believed that if God had wanted Terri to die, he would have taken her — and also that she would have wanted to live, however it was that she lived.
Later, Bobby Schindler would argue that the media had misconstrued this hope: that in an effort to portray the Schindler family as religious zealots — because that made the story more dramatic and also more legible, in an American sort of way, a quintessential 20th-century battle between medicine and faith — the Schindlers were described as not believing in science. Yes, at first, they hoped for a full recovery, but over time their expectations became tempered. They hoped that Schiavo might improve a little.
And anyway, the Schindlers didn’t believe that Schiavo was in there, somewhere, but rather that there she was, however disabled, lying in front of them. Alive and thus in possession of a life worth living. Nobody, the Schindlers argued, would say that a person with an intellectual disability should be euthanized because of it — and wasn’t the vegetative state just a further point on the same spectrum? If it wasn’t, then where exactly did their critics propose to draw the line? As time went on, Bobby came to see the “persistent vegetative state” as politicized and unreliable and also a euphemism — a phrase that doctors could use to give themselves moral cover for killing disabled people.
The Schiavo affair became a national news story and then a ubiquitous news story. At the end of it, five court-appointed physicians assessed Schiavo. Three found her to be in a vegetative state. The other two, selected by the Schindler family, did not. One, William Hammesfahr, testified that Schiavo “was in an alert state” and that she could follow commands, and that she might yet improve. The Schindlers filmed Hammesfahr’s assessment and later made it public, along with other family videos, in an effort to dispute the vegetative state diagnosis — though medical experts would later say that Terri’s movements were reflexive instead of purposeful, and the clips had been culled from hours of footage that seemed to show Terri doing something other than what she was asked to do. “Terri? Open your eyes up,” Hammesfahr urges in the clip. “Open your eyes. Terri open your eyes. There you go. Good. Good. Good job. Good job, young lady. Good job!”
The courts sided with Michael Schiavo again and again. After having a feeding tube inserted, then withdrawn, then inserted, then withdrawn, then inserted again (on the orders of Jeb Bush, Florida’s governor), it was removed for the last time on March 17, 2005. Thirteen days later, despite an effort led by President George W. Bush to have the tube reinserted, Terri Schiavo died of dehydration at age 42.
Schiavo’s autopsy report revealed that her brain weighed just 1.36 pounds: about half that of a normal brain. Her occipital lobes were severely atrophied, which indicated that she was blind. “This damage was irreversible,” the medical examiner emphasized in a news conference, and “consistent” with persistent vegetative state. But even the neuropathologist who examined Schiavo’s brain acknowledged that the autopsy could offer few absolutes. No post-mortem examination of Schiavo’s brain, or anyone else’s, could definitively “prove or disprove a diagnosis of persistent vegetative state.”
A year after Schiavo’s death, her brother read a paper called “Detecting Awareness in the Vegetative State,” published in Science in September 2006, by the Cambridge University neuroscientist Adrian Owen and five colleagues. The paper described a 20-something woman who was diagnosed as vegetative but had nonetheless been found, in an fMRI scanner, to have the capacity to imagine playing tennis. The New York Times quoted Schiff, the neurologist, describing it as “knock-down, drag-out” evidence that the woman was aware. Schindler wondered what might have happened if it had been published just a year earlier.
In the years after, the story that Schindler told about his sister’s death became a larger story about disability in America. About how Schiavo was a disabled woman who had been called “a vegetable,” and how her doctors had been “indoctrinated” into viewing her killing as an act of compassion.
All along, some disability rights groups had claimed Schiavo as one of their own — though others argued that she was something else entirely. “We were kind of told that Terri existed outside of disability,” Schindler says. “Being in the P.V.S. somehow took her out of being disabled, into a new category.” He had come to reject the exclusion, to see the vegetative state diagnosis as a distraction.
Schindler started advocating for those he called “the medically vulnerable.” He gave speeches about the vegetative state and about the perils of modern medicine. He spoke at right-to-life conferences and right-to-life marches and hosted annual “Terri’s Day” events across the country.
This was after the passage of the Americans with Disabilities Act, and Schindler had come to learn of the “disability paradox.” The concept, popularized in the ’90s, described the tendency, among nondisabled people, to underestimate the quality of life of people with disabilities: to assume that it was much worse than it was, filled with suffering and devoid of happiness, and so maybe not worth living. While Schiavo was alive, some commentators argued that she had no capacity for quality of life at all — but also, at the same time, that her quality of life must be dreadful. There was a kind of illogic to the argument, Schindler thought, but also an arrogance. How could anyone presume to know her inner world?
In 2011, a famous study in the journal BMJ Open examined people with locked-in syndrome, all of them cognitively healthy and able to communicate using eye movement. The paper found that most of the locked-in patients were happy — and that, surprisingly, the ones who were locked in for longer were more likely to be so. Only 7 percent of the respondents wished for euthanasia. The study was imperfect, but the thrust of it was clear: Even a life locked-in wasn’t so bad, in the end. Maybe just because it wasn’t, or maybe because a person was able to acclimate to things.
Schindler initially believed that all the new research on disorders of consciousness would help his cause, which was in part to invalidate the vegetative state as a diagnostic category, to reveal it as something too unstable to serve as the warrant for a decision to terminate care. He read the research showing that bedside exams were inexact; that some patients were misdiagnosed; that some patients were covertly aware; that some patients improved years later.
But he found that scientists who studied covert consciousness were quick to distance their research from Terri Schiavo. They insisted that she had really and truly been vegetative — and not the kind of vegetative that is prone to clinical error and to change. Still, he noticed that some of the leading neurologists had never weighed in on his sister. At some point, he wrote to a few of them, including Owen, the inventor of the “imagine playing tennis” task. But nobody wrote him back.
It is hard for Adrian Owen to keep track of all the people who write to him, because people write all the time: usually to plead for a brain scan. Sometimes, a doctor writes on their behalf. I’ve got a family, she will explain. They’ve read your book. They want a scan before we pull the plug. Once, the relatives of a man in British Columbia tried to get a court order, forbidding the man’s wife from disconnecting his feeding tube until he could be flown to London, Ontario — where Owen’s lab is based, at Western University — for functional neuroimaging. In the end, though, the judge sided with the man’s wife and the feeding tube was withdrawn without the testing. “It was a very Schiavo-like situation,” Owen says.
People write to him because, 20 years after Owen found his first covertly conscious patient, the testing is “not standard of care in any place in the world.” In 2018, the American Academy of Neurology acknowledged that functional imaging could be useful when a diagnosis was “ambiguous,” but it did not define exactly when a situation was ambiguous, and in practice the testing almost never happens, and there is no infrastructure that will allow it to.
If a person is writing from abroad, Owen will explain that, unfortunately, he can’t help them — that it is not practical to bring a foreign patient into the labyrinthine Canadian medical system. A lot of people write from the Middle East, because the withdrawal of life-sustaining care is uncommon there and so there are more vegetative patients.
If a person writes from somewhere in Canada, Owen is sometimes able to offer a scan, but only if he can find a research objective for the testing — if he can make the case that he will learn something new, for example, because of the particularities of a person’s brain injury. “I don’t think I could justify spending a lot of money paying to bring a patient to see me just to get them to imagine playing tennis,” he says. Hundreds of patients, in dozens of studies, had already been asked to imagine playing tennis or some equivalent task — and always, about a quarter of them could. The number who were covertly conscious was probably even higher, because the tests were prone to false negatives.
It bothers Owen how little has changed for his research subjects over that time. Some of his colleagues have spent years on the development of brain-computer interfaces: implanted devices that, they hope, can restore communication in patients — to liberate them from their uncooperative bodies. But nobody has seemed to get very far with disorders of consciousness. And treatment for chronic patients has barely advanced. A majority of patients never get any rehabilitation at all. And those who do are given different medications and therapies, in different combinations, many of them untested or not studied over time.
“These are not sexy patients,” Steven Laureys, a neurologist at the CERVO Brain Research Center at Laval University, in Quebec, told me. “They are neglected.” For years, a small group of American rehabilitation specialists has tried to get the Centers for Medicare and Medicaid Services to change its eligibility rules, to let more disorders-of-consciousness patients access inpatient rehab. The idea is that even a patient who can’t actively participate in rehab would benefit from medical attention and from passive therapies meant to prevent muscle atrophy and, at least in theory, provide the right conditions to allow the recovery of consciousness. But this has not amounted to anything — and under the Trump administration, the conversations have slowed.
Even those uncommon patients who are identified as covertly conscious are rarely helped. Certainly, Owen hadn’t helped them. And over the years, he has felt uneasy about this. When he first began his research, if Owen found that a person could imagine playing tennis, he would not even share this result with the subject’s family. The brain-injured patient was simply sent back to where she came from.
This was true of that first covertly conscious patient from the 2006 Science paper: “Carol,” a 23-year-old who was hit by two cars while crossing the street. She was sent back home without her parents ever being told what researchers had learned about her, and from her. Owen had thought of telling them, but in the end decided that it wasn’t his place; he wasn’t Carol’s doctor, and her doctor decided not to tell. Still, he thought about it.
He thought too of “John,” an Eastern European man who had been part of a landmark 2010 experiment: the first to use fMRI to establish a channel of communication with a covertly conscious patient — with imagining playing tennis for “yes,” for instance, and imagining walking through the rooms of your house for “no.” In the scanner, John had been able to confirm that “no,” he did not have sisters and “no,” his father’s name was not Thomas and “yes,” his father’s name was Alexander.
Near the end of John’s testing, the researchers decided, almost on a lark, to ask him one more question: Did he want to die? They waited for an answer, but the results were unclear, and so they ended the test. They did not try again. Owen wondered, later, about what John may have been thinking after the question was posed. Maybe, “Well, it depends on what the alternative is!” Or, “What are the chances that you will find a way to get me out of this situation within another five years?”
But maybe it was worse than Owen imagined. Maybe John had done his best to communicate a response — that yes (tennis!) he wished to die — but the researchers hadn’t been able to decipher it. And then John, not knowing that his response was indecipherable, waited for a death that never came. Or maybe he was indecisive in the moment and then came to an answer later (tennis! tennis!), and then waited for researchers to scan him again, only to discover that he would never be scanned again and that he would instead be sent back to Eastern Europe, where researchers would lose touch with him after his family’s phone line was disconnected. Perhaps he ended up in a nursing home, where nobody even thought to turn on the television, or change the channel if the television was on, or play some music.
At the time, Owen didn’t have the approval of an ethics committee to disclose the results to anyone. More broadly, it was common among researchers not to disclose any results at all. In the training of a scientist, research was research and medicine was medicine, and they weren’t the same. They had different obligations.
And anyway, there was no protocol for what to do next, after a person was found to be covertly aware. A positive result on a brain scan could thus, as some researchers argue, create “profound ethical dilemmas” without solutions.
But a growing body of bioethical work argues in favor of testing and disclosure, some of it drawing on the language of civil rights. Joseph Fins, the bioethicist, described severely brain-injured patients as a “disenfranchised” minority whose rights must be restored. According to this view, patients with covert consciousness have a right to be diagnosed, to be known as conscious. To be recognized — borrowing from the philosopher Martin Buber, as some neuroethicists do — not as the “it” of an empty body but as the “you” of an inhabited one. Just the diagnosis, on its own, could be emancipatory.
In 2022, Brian Edlow, a critical care neurologist at Massachusetts General Hospital, started the Emerging Consciousness Program: very likely the only clinical program in the United States that routinely tests I.C.U. patients for covert awareness. Edlow started by testing his own patients, using fMRI, but was soon getting calls from physicians around the state who wanted their patients tested too.
In the early 2000s, nobody was testing acute patients for covert consciousness. In 2019, a team of researchers, led by Jan Claasen, the head of critical care and hospitalist neurology at Columbia University, tested more than 100 people in the I.C.U. In a paper published in The New England Journal of Medicine, the team found that 15 percent of acute patients had brain activation when asked to “keep opening and closing your right hand” and “keep opening and closing your left hand” — and that those who did were about three times as likely to recover at least partial independence.
It meant something different to find consciousness in the I.C.U. because there was still time, maybe, for something to be done with the information — because in those early days and weeks, family members were still deciding what to do with their loved ones, and many were deciding to let go. According to widely cited research from Canada, about 70 percent of traumatic brain injury patients who die in the hospital do not die from their injuries but from the withdrawal of life support. “So that’s a big chunk of people that are dying because we are not pursuing aggressive care,” says Joseph Giacino, the director of rehabilitation neuropsychology at Spaulding Rehabilitation Hospital.
At Massachusetts General, Edlow wondered if families would be more likely to continue care if they knew that their brain-injured loved ones could hear and understand. This might be justified, in some cases. But it was also possible that the findings could lead some families to insist on futile treatment when otherwise they would have just let go, or else to treat patients past the point they would have wanted — into lives they could hardly bear. There were some researchers who worried that this kind of testing could itself create a scourge of false hope in the I.C.U. And that, carried out at scale, it could undermine entire diagnostic categories, like “vegetative state”: making them seem suspect or slippery, when really, as far as anyone knew, a majority of these patients were just as they seemed, and their prognoses were just as dire as they appeared.
Edlow found that a family member’s reaction could go different ways. Sometimes, he would tell a person that her loved one was covertly conscious and then study her face as she worked to comprehend it. “Within a matter of 30 seconds to a minute, a family member will say to us: ‘Wow, this is amazing. You’re saying my son, my daughter, my husband, my wife is conscious. This is incredible!’ And then you’ll see this switch, like a flipping of their brain, and they will tear up and say: ‘Oh, God. You’re saying they’re conscious, and they know what’s going on, and they’ve been conscious this whole time? This is horrible.’ And then they’re like: ‘Well, wait a minute. What does this mean? What do we do?’”
As it is, the detection of covert consciousness doesn’t change anything, legally, for the patient or the people deciding for him. There are no special protections that a person accrues just because he can imagine playing tennis in an fMRI scanner. There has never been a case in which the results of a brain scan led to some kind of dispute that ended up in court and then set a legal precedent — though some researchers believe that this is where everything is headed. “We will have a next Terri Schiavo case,” says Steven Laureys, the Laval University neurologist, and it will involve “computer interfaces and fMRI and other technologies.”
Still, it raises an ethical question, if not yet a legal one. It is widely accepted, in medicine, that if a patient is in a vegetative state, it is morally permissible for family members to withdraw his life-sustaining treatment. But does that permission extend to patients with covert consciousness?
And maybe covert consciousness undermines the whole discussion anyway, because a surrogate decision-maker’s authority is meant to be invoked only when a patient loses the ability to decide for himself, and maybe a person with covert consciousness could, with the right setup, choose. Researchers have never used an fMRI scanner to ask a patient if he wanted his ventilator withdrawn, but from a practical standing, it is feasible — with, say, the imagination of tennis for “yes” and the imagination of walking through a house for “no.”
“I’m going to give you all my darkest secrets now,” Owen told me when we first spoke. “I do think we’re really close. Because technologically, we’re there, right? We can do it. it’s just the ethical and legal sort of things that we need to sort out.”
At Western University, Owen found a clinical collaborator, a neurologist named Derek Debicki, and in 2021, began scanning patients across three I.C.U.s. Their team used a newer technology, functional near-infrared spectroscopy (fNIRS), which had the precision of fMRI but was inexpensive and portable, in the form of a thin silicone cap covered with tiny light sources and detectors. Matthew Kolisnyk, Owen’s graduate student, had developed software that could decode the device’s data in just a few minutes: quickly enough to allow a kind of fluid conversation. The team found, in a paper published in December 2025, that a quarter of their scanned patients could imagine playing tennis.
The plan is that the next time a patient is able to imagine playing tennis, the whole research team will be called to the hospital and there, at the patient’s bedside, they will start a yes/no question protocol. The first tier of questions will be basic autobiographical ones and questions designed to rule out disorientation and delirium — something like, “Does a stone sink in water?” Then will come more ambiguous questions about a person’s current state: “Are you in pain?” “Do you feel safe?” And then, Owen says, “the third level is our questions about what they want their future to look like. And we haven’t got there yet.”
Owen expects that of the patients who can imagine playing tennis, only a fraction will be able to answer even the first tier of queries. But he is certain that he will find someone who can go all the way and that he can persuade the ethics committee to let him try. “Up until even a couple of months ago I sort of thought, Well, are we really going to get to ask a patient if they want to live or die? And now I’m sure we will.”
But almost everyone else in the field seems to think that he will not, or at least that he should not. “I don’t think we’re close at all,” Giacino told me. These researchers argue that answers obtained through the device would never rise to the level of informed consent, because it would be impossible to know, from a yes-or-no answer, whether a patient really understood his situation and what he was asking for. The patient would not be able to ask questions about his injury. If he had a thought that did not align with one of the researcher’s questions, it would go unexpressed.
Maybe a patient, asked if he wanted to die, would answer “yes” because he was confused about his prognosis. Or because he was tired, and for some reason found it easier to imagine playing tennis than to imagine walking through his home. Or because he was depressed or dissociated or psychotic. The patient’s doctor would have no way of knowing if he was hesitant or uncertain or would change his mind. Couldn’t someone want to die in the morning but then wish fervently to live by lunchtime?
Even in the best of circumstances, a “yes” or “no” from an fNIRS test is not an answer per se, but an inference of one: an interpretation of recorded neural activity filtered through a particular research team’s algorithm.
Owen once shared these concerns, but he has come to believe that he was overthinking things. He learned that I.C.U. physicians test for decision-making capacity and informed consent all the time, but the process isn’t always as rigorous as he had assumed it would be. A person with liver failure, for instance, is given his options — and once he makes a choice, he generally gets what he asks for. His doctors might ask a few follow-up questions, but they would not spend hours assessing his medical knowledge and analytic abilities and mental health. “There is an argument,” Owen says, “that this is no different.”
At some point, Owen says, these ethical issues will only be resolved once he actually finds a patient and starts asking questions — “regardless of how much hand-wringing we do about it beforehand.” He has decided that he will try. “There’s a reasonable argument,” he says, “that it would be unethical not to.”
In January 2026, someone at the nursing home where Aaron was living found him lying in bed without a pulse. He was rushed to the hospital where, per Tabitha’s orders, he was resuscitated and admitted, and then later transferred back to the nursing home. Tabitha was told that, given her husband’s condition, he remained unstable, his immobile body prone to skin breakdown and infection and sepsis. Even Superman — the actor Christopher Reeve, who was paralyzed — had died of complications from a bedsore.
Tabitha barely saw doctors anymore. They tended to visit Aaron in the early mornings, while she was still at work. Sometimes, though, she used ChatGPT to write professional-sounding emails to hospital administrators — emails that seemed as if they might have been written with a lawyer’s help — and then, sometimes, a patient representative would make herself available. In general, Tabitha says, people at the hospital treated her “like an idiot.” It made her want to fight them even more.
When Aaron’s new doctors started talking about comfort care, Tabitha called Bobby Schindler. They had stayed in touch over the previous year; he called, sometimes, just to see how Aaron was. Schindler told Tabitha that the brain takes time to heal: years, sometimes — decades, even. “He gave me the confidence,” she says, “not to fold.”
More than a year after Aaron’s collapse, a year of hospitals and nursing homes, Tabitha still believed that her husband was probably aware and improving, though not a single clinician had raised the possibility that he might be. It made her wonder how doctors could know about a thing, covert consciousness, for 20 years, but still go about their work as if they didn’t. And not explain any of it to patients and their families. “I think they don’t want to give you false hope,” she says. So they try to make sure that you don’t hope at all.
But she does, sometimes. In all the uncertainty and in all the space that exist between science and ordinary medicine — between what is knowable about a human brain, and what doctors know about Aaron’s — Tabitha sees a reason to keep trying. Or, at least, to keep waiting.
In the meantime, she thinks that maybe, at some point, somehow, she can find a way for Aaron to be transferred out of the nursing home in South Carolina and into some other place where he can be put in a scanner and asked to imagine playing tennis. That way, everyone else will finally see her husband as what she knows him to be. Tabitha will write to some scientists. She will plead for a brain scan.
Early on, after Aaron’s injury — when she had first started reading about the vegetative state — Tabitha said that one of Aaron’s doctors asked her why she wanted the test so badly. After all, it would not change anything, practically, for Aaron. “They were like, ‘Why do you want that?’ And I’m like, ‘Because I need it.’”
If Aaron was conscious, Tabitha says, she needed to know, because then she would push harder to get him treatment. And if he wasn’t, she needed to know that too, because then she might decide to let him go. “Because I know he wouldn’t want to be there if he wasn’t there,” she says. “What’s the point?”
Katie Engelhart is a contributing writer for the magazine focused on medicine and ethics.
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