The Mystery of Consciousness
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In March of 2013, Jennifer Tompkins' parents got devastating news. Their daughter had hit a tree while driving home after her car skidded on ice. Jennifer had suffered severe brain injuries. When her dad, Jack, arrived at the hospital, it wasn't clear that she was going to survive. And if she did... She would most likely be vegetative for the rest of her life. They were telling us there was a good chance she would never talk.

After brain surgery, Jennifer did regain consciousness, but when she woke up, it was all a blur. I didn't wake up, like, I was half dead, you know, I'm...

I start like, I don't know, I don't know, I don't know. I don't remember, I don't remember. Like, I can't think the words out. She couldn't speak at first or move. Eventually, Jennifer transferred into a rehab program for people with severe brain injuries. Three months after her accident, she started to talk again. Jennifer's speech therapist called her parents into the session. And we went down and Jen told us she loved us.

It still chokes me up. Sorry. Jack also remembers a day when a physical therapist was working with Jennifer on standing up. Jennifer got frustrated and tired. She wanted to quit. But Jack told her she had to try harder. And one of the things that I told some of the therapists joking around when I was there, I was like, you know what? I'm going to know my daughter's coming back and being herself when she flips me the finger. Yeah.

So we were sitting there and I'm telling her to get off the bench and look out the window and start working on this. And her response was to give me the finger. So it kind of showed me that the kid was coming, you know, slow steps. And you might not appreciate what I'm saying. And I'm sorry about that. But small gestures sometimes make big things. And that told me that my kid was still deep down inside there.

And she was fighting to come out. Regardless of what was going on on external, she was still in there. Is my loved one still in there? That question became easier for Jack to answer as his daughter started to show signs of recovery, signs of her personality re-emerging.

But that same question is terrifying and really hard to answer when somebody is in a coma or minimally conscious, being kept alive through machines and feeding tubes. They can't speak, they can't swallow or move.

We use a lot of different terms in these situations, like sentience. Is this person sentient? Can they still feel pain, joy, and experience the world around them? Are they conscious, which is hard to pin down even for doctors? There is no consensus, I would say, on what the definition of consciousness should be. That's neurologist David Fisher. For our purposes medically,

We often simplify it as consisting of two parts. There's wakefulness, which is essentially a patient's ability to open their eyes and be awake. And then there's awareness, which is the ability to experience yourself and the world around you.

And so the reason we distinguish between those two parts is because there are some patients that have one but not the other. You know, we have a lot of patients who are awake and their eyes are open, but nobody's home, so to speak. They're not demonstrating any behaviors that are purposeful. But for families looking at a loved one lying seemingly unconscious on a hospital bed for weeks...

Demonstrating behaviors that are purposeful often seems too limited, too narrow to decide if that person is still in there. It does make you reevaluate everything and the way that we assign meaning to everything and decide.

That's Anne Louise Weaver. Her daughter was in a coma for weeks. She says seeing her daughter so helpless and vulnerable made her rethink what it even means to be conscious. And so that realm of consciousness and what that actually means, it becomes a lot more spacious because it's not, there is no...

flip of a switch. There's no click of a finger. It's a very gray, mysterious...

On this episode, understanding the mystery of consciousness, when somebody's brain has suffered a lot of damage, but it's still functioning to some degree. What are these patients aware of? Can they recover? And if so, how much? We'll explore the case that influenced a lot of our thinking on this issue and hear about new ways researchers are defining recovery after severe brain damage. ♪

Twenty years ago, the entire country was gripped by the story of a young woman whose life was hanging in the balance, Terri Schiavo. She had been unconscious for years and years in a care facility in Florida, and the feeding tube keeping her alive was about to be removed.

Terry had suffered cardiac arrest and subsequently severe brain damage from oxygen loss at just 26 years old. She didn't have a living will, naming a health care surrogate, so that fell to her husband, Michael Schiavo.

At first, Michael and Terry's parents worked together, caring for Terry. But as the years went by and there was no sign that Terry would recover, they started to vehemently disagree over what should happen next. Michael argued that Terry would have never wanted to live like this, completely dependent, unable to move, speak, eat, or even swallow. In 1998, he filed a petition to end her life.

to remove Terry's feeding tubes. I'm going to do what it takes for Terry. Terry's parents, Mary and Robert Schindler, fought to keep caring for her all the way to the Florida Supreme Court. Terry is responsive.

She reacts to her mother, she reacts to her siblings, her brother and her sister, and to myself. And she's a live human being. She has emotions and she expresses her emotions. And all we want to do is get her better. The case sparked fierce debates across the political spectrum. It attracted attention from people all over the world and politicians at all levels of government.

Florida Governor Jeb Bush intervened to keep Terry alive, as did President George W. Bush. The essence of civilization is that the strong have a duty to protect the weak. In cases where there are serious doubts and questions, the presumption should be in the favor of life. The attention was so intense that at some point, the facility where Terry was living wanted her to leave because of safety concerns.

The courts provided security for her room and for Pinellas County Judge George Greer, one of the 19 judges to touch the case. Here's Greer recounting this time during a Q&A at St. Petersburg College. We had details of undercover deputy sheriffs at our home 24-7. They took us wherever we went. I wore a

Bulletproof vest when I wasn't in the courthouse and wasn't at home. When I walked the dog, I wore a bulletproof vest. Fifteen years after Terry had collapsed, Judge Greer ruled in support of Michael Schiavo's decision to have Terry's feeding tube removed. Her parents had exhausted their options. The decision stood. Terry died on March 31, 2005.

The case continues to shape our understanding of sentience and consciousness to this day. Reporter Emily Prevady tracked down some of the people closest to the case to understand its long-term impact.

In 2003, it was a dramatic time for those close to the Terry Schiavo case. Michael Schiavo had finally won the battle against his wife's family in court. And so Terry's feeding and hydration tube was removed. But then Florida Governor Jeb Bush intervened, and the tube was immediately reinserted. Shortly thereafter, Jay Wolfson got a call from the governor's office.

asking me if I would serve as a guardian ad litem, which is a special legal term of art. Jay would serve as a proxy for Terry to help determine what should happen next, what was in her best interest, the right thing to do. I have no idea to this day how or why I was selected.

Jay certainly has the credentials for the job. He's a professor of public health and medicine at the University of South Florida. He's researched and written about health and ethics for decades. But this job felt daunting. And I was suddenly thrown into this extraordinarily public, yet at the same time amazingly private issue of death and dying in a family that I didn't know.

but who I came to know over the course of a period of time. Jay immersed himself in Terry's story. I was reading thousands of pages of clinical information, sorting things out. What do we know about her actual condition? What do we know about her capacity to swallow? What do we know about her consciousness? What do we know about her ability to respond and react?

There were tests that were performed and clinicians had studied her. There's a lot of literature in the field about the condition that she was diagnosed as being in, which is a permanent vegetative state.

Being in a vegetative state meant that the feeding tube could be removed under Florida law. But Terry's parents were trying to prove she wasn't in a vegetative state, that instead she was minimally conscious. That would prevent the removal under the same law. And to the extent that I tried getting to know Terry, I was at her bedside every day, sometimes for four or five hours. And I'd say, please help me help you.

give me something just something because their parents mary was going to demonstrate to me how terry responded in a very specific way and she wasn't responding what i learned is that hope is an extraordinarily powerful elixir that can can blind us sometimes

Terry's brother, Bobby Schindler, felt the intense pressure of the situation. My sister had this death sentence. You know, we didn't have a specific date yet, but Terry had a ruling, a legal ruling that said that she was going to have her feeding tube removed. Bobby says his sister was still in there. I would look at her and I knew, she knew what I was saying. She knew what I was saying to her. I could just tell by the way she was looking at me. And, you know, my mom would walk in the room

Almost every single time she would walk into the room, Terry would respond as soon as she heard her voice. So there was just things about her that were just unmistakable, that we knew that at some level, Terry was understanding or hearing what we were saying. And there was even times where she was responding to commands. The legal arguments about Terry being in a vegetative state versus minimally conscious sounded cruel to Bobby.

His sister was alive, vulnerable, and she needed protection. What reason would that be to deliberately end a person's life because of a physical disability, because of a brain injury?

So it was just a terrible injustice. It was immoral. It was against our faith. It was an attack on a person's human dignity and their value. Everything that's wrong, I think, as we stand for as human beings was being violated. And that was the protection of a person's life.

Bobby says the situation took a massive toll on the people closest to him, especially his father. You know, duty as a father is to protect their kids. And it was killing him that he wasn't able to do that. That he was having people that didn't even know his daughter were making decisions. And it was just, it was having a tremendous impact on him. After Terry died,

Bobby's father told him he'd never be able to forgive himself for failing to protect his child. And not only the killing of his daughter, but the starvation and dehydration. Imagine a parent walking into a room for 14 days and watching his child die this way. I can't even think or imagine something that would be more painful for a parent to have to watch. And my dad was powerless.

Attorney John Eisenberg found himself on the other side of this fierce argument. He joined the legal team for Terry's husband, Michael Schiavo, relatively late, offering his insight from handling a comparable case in California just a few years before.

They only met in person once during the case, briefly at court in 2004. But they've been in touch ever since, such as when reporters are looking for Michael. He won't talk to the media about the Shavell case anymore. He's done with it. John says Michael showed a lot of strength and resolve as the legal battles played out. At the time, he was absolutely unfazed by the personal attacks on him.

He was not intimidated by a governor, a president, a high-level senator, or a high-level member of Congress, of the House of Representatives, attacking him personally. He was angry and not cowed. He was angry at being attacked. He was angry at politicians exploiting a tragedy for their own political ends. He was angry at the misinformation that was being circulated. He was angry at being attacked

Called a murderer, wouldn't you be? But he didn't shy from any of it. He didn't back down. And to this day, that's how he is. One question is raised repeatedly about this case. Why didn't Michael walk away and leave Terry's family to care for her? What he said was, I know what she wanted. She told me. And it's my duty, my responsibility to make sure she gets it.

John has handled about a dozen similar cases during his career. He even published a study years after the Shibo case, analyzing how state laws treat sentience and other end-of-life issues. They're all over the map on how to define or whether they even attempt to define sentience. Some define it behaviorally. Are you capable of interacting behaviorally with your environment? Do you have brain functions that are consistent with the notion of awareness?

So in some states, the definition of sentience hinges on whether patients respond to speech and commands, if they follow movement with their eyes, and so on. In other states, it's about what kind of activity might be detected by a brain scan. John also found that there have been few, if any, changes to the state law's governing consciousness since the Shivo case. State legislators realized that

we should just stay out of this, other than to stick with the laws that we have that generally defer to family members, the patient themselves if they have an advanced directive, to a surrogate in how to make these very difficult decisions. So nobody touched it. It still hasn't come back up. I'm still waiting. I don't think it will happen.

John's study found the case did have an impact in driving public awareness and conversations about end-of-life planning. It also encouraged the practice of hospitals requiring patients to fill out forms ahead of major surgery that address some of these issues, like identifying a surrogate. And that paperwork is now ubiquitous.

For some healthcare providers, Terri Schiavo's story was pivotal. I think that I was a fourth-year medical student when the news frenzy around the Terri Schiavo case came to be. I was just starting out in the intensive care unit, and so it was really an important part of my medical experience in these issues with ethics and persistent vegetative states. Lauren Van Scoy is now a pulmonary critical care doctor and researcher.

She focuses on end-of-life communication at Penn State Hershey College of Medicine in central Pennsylvania. The focus of my research is really around figuring out ways to get people to talk with each other about the types of medical decisions that they would want if they were very sick or near the end of life. Most of my clinical time I spend in the intensive care unit taking care of patients who often have family members having to make these really tough decisions and they've never really

had conversations about what the patient would want and the patient is too sick to answer. Lauren says she's noticed some changes in rates of people specifying and documenting their end-of-life preferences.

Since the Terry Schiavo case, people are more aware. And I think that the rate of advanced directives has actually increased, particularly in older populations, Caucasian populations, but across other populations, Black, Hispanic, underrepresented communities. There's a lot of stigma around creating advanced directives and a lot of distrust around making legal documents that specify your wishes while people living in nursing homes or

Older populations, white populations, the rates have gone up since the 90s and early 2000s when the Terri Schiavo case came to be. A study from the University of Pennsylvania found about a third of participants had a living will or named a surrogate, with marginally higher rates among people with chronic illnesses. For people over the age of 65, it's much higher, just under half.

Bobby Schindler has spent the last 20 years advocating for medically vulnerable people as president of the Terry Schiavo Life and Hope Network. It's his way of keeping his sister's legacy alive and trying to come to terms with what happened. I had a very difficult time visiting my sister. It had nothing to do with love or caring about her. It was because I was having a very difficult time seeing her in that condition. And, um...

It was fear. It was just, and I regret it to this day, Emily. I have a tough time, and I think that's part of what drives me. That story was reported by Emily Previty. Coming up, doctors are learning more about recovery from serious brain injuries. But the road back is long and challenging.

Her mouth was starting to move and it seemed like she was trying to say things and she would start following people with her eyes. It was like watching her all over again as a little baby, discovering her hands, discovering movement. We'll meet patients who've come out of an extended coma, their families and physicians. That's next on The Pulse.

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This is The Pulse. I'm Maiken Scott. We're talking about the mysteries of consciousness. When somebody is in a coma after a serious brain injury, the main thing their family members want to know is when will they wake up? And what will they be like if and when they do? And these questions are really hard to answer, even with the latest brain scan technology that shows which parts of the brain are damaged and how extensive the damage is.

This is an area of medicine where the more researchers are learning, the more questions they have. Alan Yu reports. Two years ago, Cassie Wolfe had graduated from college. She was 23 and working full-time on a farm and a trucking business.

One night, she went out dancing with her sister at a restaurant in Pennsylvania. Suddenly, Cassie collapsed in the bathroom. An ambulance took her to a local hospital. Her mother, Anne Louise Weaver, rushed over.

Doctors took Anne Louise and the other family members into a small private room and told them that Cassie's heart had stopped. She suffered a stroke at the same time because she went without oxygen for quite a while and that she was fighting for her life and most likely would not make it through the night. Anne Louise and Cassie's younger sister Hallie stayed at the hospital anxiously waiting for news, while machines and medications kept her alive.

doctors found out Cassie had an undetected genetic heart condition. Two days later, doctors told Anne Louise they thought Cassie would survive.

And that's when a new reality dawned on Anne Louise. When I had talked to the doctor, the surgeon who did her second life-saving procedure, I asked him when would be the soonest that I would be able to talk to her if this worked and she survived. And he said it would be at least three weeks till I could have a conversation with her. Cassie would need specialized care.

When she was stable, a medical helicopter took her to a hospital in Philadelphia. Anne Louise rented an Airbnb to stay close to her daughter. Just basically camped out beside her from, you know, morning till bedtime. I would try to go home and sleep at the Airbnb to get... Because the staff was very adamant that as the parent, you get sleep. Cassie was unconscious for weeks.

During this time, doctors met with Anne-Louise to talk about what Cassie's future might look like. They had told us initially when she was still in a coma, she will come out of it, but it could be anywhere from a vegetative state to I'm going to need some help on my forms. While Cassie remained unconscious, her doctors asked Anne-Louise to think about what Cassie might want, given the situation. They were asking me, you know,

on behalf of your daughter, what do you feel she would need? What would be considered a meaningful recovery? What would be considered a manageable life for her? You know, those are really hard, hard questions to answer for a child and also as the family. Anne Louise says she thought about her daughter's disposition. Cassie is strong, fierce, a fighter.

One time, Cassie broke her nose when a cow kicked her in the face. And she set the broken bone by herself because she did not want to go to a hospital. I felt she would at least need to be able to get around on her own. It wouldn't feel like a meaningful life to her if we had to lift her and she had to be in a wheelchair and completely dependent. When I finally actually woke up, I was like, oh, well...

This sucks. This is Cassie. After about two months, she was conscious and slowly became able to communicate. Anne-Louise says it happened very gradually. Her mouth was starting to move and it seemed like she was trying to say things and she would start following people with her eyes. So we had these tiny little signs that she was starting to come back. But it took days and weeks and months.

It was like watching her all over again as a little baby, discovering her hands, discovering movement, listening to sound. And so it was really endearing and beautiful, but also really scary to realize we're starting over and not knowing what that was going to be like and what that was going to require from her and from us. And when you wait for your child to wake up for so many weeks and weeks and weeks and

When they start to show any sign of communication and being there, it's such a joyous experience. Like, there they are. But a lot of Cassie's memory was gone. One day I walked into her hospital room and she looked at me just kind of with this sort of glazed look and she said, you look like my mom. And I was like, what?

Another time when her sisters came to see her, they were asking if she knew their name and she couldn't. I'm not sure. And you could tell there was recognition there, but her sister ran into the bathroom and just burst into tears. And she was 16 at the time and was just devastated that Cassie had woken up but didn't know her name. There's nothing like it, going through that process with a loved one, waiting for them to come back. But then when they do...

They're not who left you so quickly. And one of the best analogies that a doctor gave to me to help me understand this was like he said, when there's a medical crisis, it's like you fall into a canyon. You fall over a cliff into a canyon. And because it happens so fast, you think you can climb back up and out. But what actually happens is you

Your journey out is like circling the canyon around and around and around at this slow grade until you finally can come up and out. At first, Cassie could not sit in a wheelchair on her own. She had to be strapped in with a neck strap. Cassie had to learn how to walk, how to write, how to brush her teeth by herself.

I was like, I have to relearn to walk. I was like, that can't be possible. That stuff had to be relearned. And yeah, it's a lot. And I thought I could do all that and then couldn't even sit up straight. Anne-Louise says rehab was a difficult time for Cassie and for her. You know, when you're a very, very independent 23-year-old, like fiercely independent, and then all of a sudden you can't

move your fork to your mouth. I mean, there's really no way to describe the anguish and the fear that surrounds that. And no one can tell you if and when these things will ever happen.

Cassie finally left the hospital after three months. She's living at home with Anne Louise now and continues to recover. She's now able to do her hair and makeup, go outside, cook and write. She still has therapy and is working towards living by herself.

And Louise says life is very different now. It does very much feel like the world has passed us by and we're in this strange, slow-moving time warp all of our own. But when you're in it and life has been compacted into this small existence, everything that is new that we're adding, it's like you keep the perspective intact.

The life Cassie has now is very different from what she had imagined two years ago. But every small gain redefines what a meaningful recovery could look like for her. And she says her doctors are optimistic.

They really do think that I can go back to work eventually, like half time. And I mean, I don't see that, but I don't know what my heart and my brain will do together in the next few years. So the doctors are smarter than most people. So they think I'll drive and I think I won't, but I want to. It's just all up in the air. But I would love to try all that stuff again.

Neurologist David Fisher is one of the doctors at Penn Medicine in Philadelphia who helps care for Cassie. He created a program dedicated to helping patients like her recover consciousness. In the past, David says, doctors have looked at recovery in a simplistic way.

whether a patient could live independently or not. And I think that's in part because as physicians or really as people, we tend to not like gray areas. We tend to not like ambiguity and it's easier when things are black and white and we can say that a prognosis is good or bad.

You know, the challenge is that functional independence is not the end-all be-all for every family when they're trying to figure out what outcomes would be meaningful, particularly if the alternative is death. He says now doctors try to get a sense of what would be important to an individual patient and their families. They have more tools like brain scans, advanced imaging techniques to study a patient's brain and body in ways that were not possible before.

Broadly speaking, there are two kinds of tests he and the doctors can do now.

Tests to check how much the brain has been damaged and where. And tests to see how well the brain is working. All of these tests have certain drawbacks or limitations. And so the hope is that by collecting multiple tests, we can help correct for that and try to make the most accurate prediction we can about a patient's capacity to recover. However, he says the more doctors and researchers learn about this, the more humble they become about how much they still do not understand.

Our ability to predict neurologic recovery is in general relatively poor. And so I think there's diminishing nihilism about patients' capacities to recover and an increasing humility about predicting those recoveries.

David says there have been studies where researchers send data about a theoretical brain injury case to doctors around the country and ask for predictions. What those studies have typically shown is that physicians are all over the place. There are some that are predicting good outcomes, some that are predicting bad outcomes, and

And we see that variability translate into practice. There are other studies that have shown that physicians are highly variable in how we prognosticate for our actual patients. The rates at which we withdraw life support are highly variable. So two physicians looking at the same patient, the same brain scan data, could come to different conclusions about whether or not they predict that patient will make a recovery. And I

He says there are some cases most doctors can agree on, but it gets very complicated when it comes to patients with mild to moderately severe brain injuries.

And these patients often cannot get a second opinion. These are patients who are in an intensive care unit at whichever hospital happens to have been closest to where their brain injury unexpectedly occurred. And families do not typically have the luxury to seek out second opinions.

So whichever doctor you happen to have been stuck with is the one who may be deciding whether they live or die. In these difficult situations, patient families and loved ones want clear answers. What's going to happen? But doctors are often not sure, says clinical neuroscientist Yelena Bodin. She used to work with rehab patients in Boston and is now a researcher at Vanderbilt University in Nashville.

She says predicting recovery is hard, even with advanced brain scans. You can actually look at a scan, a brain image, CT or MRI, and see global devastation. Multiple parts of the brain are injured. There's bleeding everywhere. And yet that person recovers. And you can see another scan where you don't see clearly that much damage and that person doesn't recover.

And so our tools that we're using, and humans anyway, are just not sophisticated enough yet to see at a very granular level what exactly is happening enough to be able to correlate it or associate it with outcome. She and other researchers say every brain injury is different.

But her work has shown that people who are seemingly unconscious could actually be aware to some degree of what's happening, more so than doctors might have thought. For instance, a paper she worked on last year looked at almost 300 people in the US and Europe who could not respond to simple commands.

But when they did brain scans, they found that some patients' brains were responding, even if their limbs were not. So you can't see them wiggling their toes, but they can think about wiggling their toes, or they can think about opening and closing their hand, even though they don't actually do it at the bedside.

they found that one in four patients showed this covert form of consciousness and followed commands. And that number is really staggering and I think has shown the world, really, not just our research world, but the world at large, how prevalent this phenomenon is.

and has changed the conversation in many ways from, you know, this is something that might happen once in a while to this is probably something that is occurring in many patients who are not conscious or appear to be not conscious or not following commands at the bedside.

How physicians view a patient's potential for recovery can depend on what kinds of patients they see, says Jennifer Russo. She's a brain injury physiatrist at the Kessler Institute for Rehabilitation in New Jersey. Jennifer says rehab specialists treat patients who survive. They see what is possible.

whereas her colleagues in the ICU have to work with patient families to make these life and death decisions. But they do not get the same picture. They don't get the joy of getting to see people recover, and they don't always get to see the potential that some of these patients can have. That happens a lot, particularly for patients who've suffered anoxic brain injuries. It's sort of been thought that someone who's

had a cardiac arrest or anything that's prevented blood flow and oxygen to get to their brain, that that universally guarantees a bad outcome. And the counseling that the families will get in that acute state is that they'll never walk again, never talk again, never eat again, won't live independently. And it's not universally true. I have had multiple patients who are walking, talking, no feeding tube, no breathing tube, and are back to their lives. But I get to see that. I get that privilege. ♪

For the patients who do make it, the journey back can be slow. Leona Giordano's son Dom was seriously injured in a motorcycle accident almost two years ago. He went from only moving his eyes in rehab to coming home to live with her. Now he's able to pick up his arm and point to yes/no. He can move his left arm and scratch his head.

Rub his nose, reach for things. We play Connect Four now.

Jen Tompkins suffered a serious brain injury in a car accident more than 10 years ago. She is a little further along her recovery. She can walk around and even was able to do office work a few hours a week at a time. I don't drive a car because my left side is like a stroke. She wears braces on her left hand and foot to hold them in place. I'm better, but I'm

Determined so. Susan Arnhold is more or less back to who she was before an accident where a car hit her when she was on her bike more than four years ago. She can do most things other than biking. And I think that's one thing I miss is that I miss being on a ride in the sunshine on a real bike down the street.

Michael Marino is a brain injury rehab specialist at Jefferson Moss McGee Rehabilitation outside Philadelphia. He treated Susan, Jen, and Dom.

He says despite all the work he does with patients, it is still very hard to predict who is going to make progress. We've had many, many success stories and you've spoken to patients who I certainly consider success stories and have really carved out improvements in their level of consciousness and in some cases really, really good quality of life. But I'd be lying to you if I said we didn't have patients that didn't do as well, patients that

never regained consciousness that never showed minimally conscious state. And so the challenge remains how to tell which patients can make a recovery, what kind of recovery, and what kind of future life awaits them. That story was reported by Alan Yu. You're listening to The Pulse. I'm Mike and Scott. You can find us wherever you get your podcasts. Coming up...

Consciousness is very hard to pin down in a medical sense. We'll talk to a philosopher about why he says we should always assume people are having experiences as opposed to assuming they're not. We need to recognize, to some extent, our uncertainty here. We need to realize that we don't know exactly how much the brain has to be injured before consciousness and sentience go. That's next on The Pulse. ♪

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If somebody is in a coma, doctors try to figure out how much brain function they have left and what their chances of recovery are. And this leaves family members and medical providers facing very hard questions. What should happen next? How much medical intervention would the person want for themselves?

Philosopher Jonathan Birch has studied this topic extensively. He's written a book called The Edge of Sentience, Risk and Precaution in Humans, Other Animals and AI. Jonathan says sentience is one part of consciousness. Consciousness is a thing with several layers, at least consciousness.

Three layers in our case, called sentience, sapience, and selfhood. The first layer, sentience, is our capacity to feel, to experience pain and emotions like anxiety, fear, joy, or excitement. It's about the immediate raw feeling, the raw sensation of the present moment. And then in our own case, this has overlays on top of it.

We're also sapient beings as well as sentient beings, which is to say we can reflect on our experiences. And from those reflections, we can abstract a sense of self as well and become aware of ourselves as beings in time with a past and a future.

When not all three are present, we tend to act like none of them are. In the book, Jonathan describes a case where doctors assumed a British patient named Kate Bainbridge was completely unaware of anything going on around her. But later, she recovered, and she talked about how scared and terrified she was about specific procedures, like inserting a feeding tube.

Well, it is an extraordinary example in multiple ways. Obviously, following serious brain injury, sometimes people are unresponsive. And historically, these patients have often been described as vegetative.

And it's just been assumed by their doctors that they're feeling nothing. And in fact, we now know that sometimes this is a false assumption, that they can't respond outwardly, but they are still having conscious experiences. And the case you mentioned was a case of this, where the patient later recovered to a level where they could communicate what had happened to them. And of course, the testimony was quite disturbing because they were reporting, you know, having been treated as if they felt nothing,

When in fact, they're having experiences the whole time, many of them very painful and unpleasant and uncomfortable. And to me, this is sending us a clear message about the need to err on the side of caution. And to me as well, the need to stop using terms like vegetative.

Terms that very starkly imply these patients with brain injuries are not having experiences when actually we're not in a position to be sure about that at all. Yeah, that is a little disconcerting how hard it is to determine what is going on with a patient. Well, there's a real need for humility, I think. And what we've tragically seen in many cases is overconfidence, overconfidence about the absence of sentience.

When in fact, we need to recognize to some extent our uncertainty here. We need to realize that we don't know exactly how much the brain has to be injured before consciousness and sentience go. And in fact, it's entirely possible for the brain to be injured in a way that prevents any outward responding, but still leave some experience there. And we always need to be aware of that risk. And we need to treat these patients as potentially having continuing experiences.

In situations where it seems like a patient will not come out of their coma, where recovery or a life without machines is not possible, Jonathan says we need to have really hard conversations. I'm a critic of what happens currently, because often, a lot of the time, what happens currently is that if everyone agrees it's in the patient's best interests to not go on living,

in this state, and indeed on reflection many of us would think we would not want to spend years in such a state, the only permitted way of ending their life is through the withdrawal of hydration and nutrition. And to me that is a real tragedy because that is not a quick way to end life. It's extremely prolonged and the potential for suffering there has to be acknowledged and it makes the process

really, really agonizing for the patient's family who have to watch this unfold sometimes over a period of weeks. And so I really want to urge a discussion here around, are there more humane ways in which we could treat these patients, potentially including revisiting that issue of assisted dying and saying, well, if we're going to allow it to happen at all, we really need to make sure it's happening humanely. What keeps us away from those discussions?

Of course, they're extremely difficult discussions to have and extremely difficult discussions to have sensitively. I think it's a process we're going through at the moment in the UK. There was an assisted dying bill that was recently passed, and I do support the principle of that bill. It led to some quite heartening discussions, I think, where the issues were taken very seriously. But that bill is all about people who are of full mental capacity making an independent, autonomous decision.

to end their lives. And so to me, it's really tragic that these patients with severe brain injuries and disorders of consciousness, they often get completely forgotten in that discussion, even though as I see it, they should really be at the center of it.

Jonathan says some of the new brain research that could help patients with disorders of consciousness is being done on brain-like structures grown in a petri dish from stem cells. That offers an amazing way to be able to study the brain, but it comes with its own challenges because at some point we have to wonder if that brain structure is now sentient.

It's another huge question. And again, the message for me is one of managing our uncertainty and erring on the side of caution. Because these organoids, as they're called, these brain organoids, the vision is to make miniature models of regions of the human brain out of stem cells. It's a wonderful idea, I think. But at the same time, intuitively, there must be some ethical limit here. There's some point where the miniature brains get too large, too complex, right?

for it to be appropriate to be experimenting on them. And at the moment, there's no agreement about where that line is or whether the researchers already crossed it. You see these examples of organoids developing precursors to eyes. You see other cases where they're able to interact with a computer and learn to play the video game Pong.

Absolutely extraordinary results that shows these models of the human brain are doing very brain-like things. And that debate is one I think we need to be having right now about how do we regulate this emerging area of research? At the moment, no one really knows.

Yeah, I guess the research is happening so quickly that it's hard to keep up with it from an ethical and legislative perspective. That's right. The technology has been moving so fast, it is outpacing attempts to regulate it. And regulators need to catch up.

Jonathan Birch is a professor of philosophy at the London School of Economics. He's the author of The Edge of Sentience, Risk and Precaution in Humans, Other Animals, and AI.

That's our show for this week. The Pulse is a production of WHYY in Philadelphia, made possible with support from our founding sponsor, the Sutherland family, and the Commonwealth Fund. You can follow us wherever you get your podcasts. Our health and science reporters are Alan Yu and Liz Tong. Our intern is Christina Brown. Charlie Kyer is our engineer. Our producers are Nicole Curry and Lindsay Lazarski.

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