COVID and mental disorders; talking pill bottles; brain death: Upstate Medical university's HealthLink on Air for Sunday. March 23, 2025

Host Amber Smith: Coming up next on Upstate's "HealthLink on Air," a researcher discusses the mental disorders in children that may be tied to COVID infections.

Yanli Zhang-James, MD: ... Some of the leading experts did suggest that infections such as this could lead to more neurodevelopmental disorders in years and decades following a pandemic such as this. ...

Host Amber Smith: We'll hear the new talking prescription bottles.

ScriptTalk: ... Instructions: Take one tablet by mouth once a day. Warning: May cause dizziness. ...

Host Amber Smith: And a bioethicist shares her book about brain death.

L. Syd Johnson, PhD: ... Death in many belief systems occurs when the soul leaves the body. This is, of course, not something we can measure medically speaking. But almost universally among human cultures, there is agreement that death occurs when breathing stops and when the heart stops. ...

Host Amber Smith: All that, plus The Healing Muse. But first, the news.

This is Upstate Medical University's "HealthLink on Air," your chance to explore health, science and medicine with the experts from Central New York's only academic medical center. I'm your host, Amber Smith.

On this week's show, talking prescription bottles will help non-English speakers and those with visual impairment. Then we'll explore the controversies about brain death. But first, the mental disorders arising in children that may be tied to COVID infections.

From Upstate Medical University in Syracuse, New York, I'm Amber Smith. This is "HealthLink on Air."

The COVID years were rough for so many people, including children. A study from researchers at Upstate looks closely at the impact COVID had on mental disorders, with some interesting findings. Here to tell us about them is Dr. Yanli Zhang-James. She's an associate professor of psychiatry and behavioral sciences at Upstate.

Welcome back to "HealthLink on Air," Dr. Zhang-James.

Yanli Zhang-James, MD: Thank you for having me, Amber. I'm really excited to share with you our research on the impact of COVID-19 and youth mental health.

Host Amber Smith: Well, what made you and your team want to look at the impact COVID had on children and adolescents in terms of mental disorders?

Yanli Zhang-James, MD: I'm a neuroscientist by training, and my research has been primarily focused on ADHD (attention-deficit/hyperactivity disorder). So I've long been interested in mental health issues in children and adolescents. But I've also considered myself a health informatician and an avid AI (artificial intelligence) machine learning practitioner. So this line of work has intersected with COVID-19 studies at the start of the pandemic.

In 2020 I was working with colleagues in our computational psychiatry and public health divisions to develop AI machine learning models to predict COVID cases in our county. While I was working on the COVID forecast, I started to explore more about the interactions, relationship between ADHD and COVID and came across many interesting readings. For example, the historical studies on the 1918 flu pandemic some have reported that increased emergence of minimal brain dysfunction in children in the decades after that pandemic. That was the name for ADHD.

So we started working on the interaction of ADHD and COVID with the hypothesis of it's a bidirectional relationship, that kids who have ADHD may more likely put themselves at risk of contracting COVID and also the other direction of the relationship, that having COVID potentially can lead to more ADHD diagnoses.

So we started to leverage a large medical record database that we had access to in examining these relationships. By the time we published the first part of the paper that ADHD is a risk factor for COVID, it became clear that the impact of COVID extended far beyond ADHD. There were many reports on more diagnoses of anxiety, depression, issues with brain fog, cognitive problems and sleep problems. But the problem with the, at the time, the (scientific) literature heavily focused on the pandemic, not specifically on the COVID infection itself. And most of the literature was on adults, so there was less learned about the impact on children. And that's why we started the second study.

Host Amber Smith: Now were you and your colleagues at Upstate seeing more diagnoses of mental disorders in youth?

Yanli Zhang-James, MD: Yes, we did. Our research on this large medical record analysis found four to six times of increase of risk acquiring new diagnosis of any mental disorders in youth. And in a separate study we also look at Upstate ER (emergency room) visits that we saw during early COVID. Despite there was significant drop of ER visits, but the number of psychiatric visits to ER remained stable, and that resulted in the increase of proportion of psychiatric ER visits in children.

Host Amber Smith: Now, when we talk about COVID infection, are we talking about just having been infected and become sick with COVID, or are we talking about the "long COVID" that we've heard about, where you have some symptoms that linger for months or years?

Yanli Zhang-James, MD: Right. So the COVID we examined in this particular study was defined as acute infections. But what we measured is the long lasting impact, in terms of new diagnosis of mental disorders in the two years following that initial infection. So you could consider that's part of the long COVID.

Host Amber Smith: I see. Well, let's talk about how you structured your study. How many children were involved, and up to what age did you look at?

Yanli Zhang-James, MD: Our study is considered a retrospective cohort study. So that means we are comparing two cohorts. We identified a cohort of kids who had COVID infections, either by positive laboratory tests, or had an ICD (International Classification of Diseases) diagnostic codes for COVID in their medical records.

Then we find another cohort of kids who never had the infections during the same study period, but they had encounters to the health care system, so they had visited doctor for other reasons. Now we compare them during the two-year follow-up to see which group had more diagnoses of mental health problems.

Host Amber Smith: The database you're working with, is it national, or is it geographic? Are you looking at certain areas of the country, or the entire country?

Yanli Zhang-James, MD: We are looking at the entire database from the TriNetX (Research Network), which is representing about over a hundred million patients, total patients. There were, a small proportion were from outside of the U.S., but vast majority, like 99% of data, were from U.S. We do not have the geographic location distinctions.

Host Amber Smith: This is Upstate's "HealthLink on Air" with your host, Amber Smith. I'm talking with Dr. Yanli Zhang-James, an associate professor of psychiatry and behavioral sciences at Upstate.

So let's talk about your results. Were kids who had COVID more likely to acquire a new psychiatric diagnosis?

Yanli Zhang-James, MD: Yes. That's exactly what we saw.

We found a remarkable increase of increased risk of acquiring new diagnosis of mental disorders in both children and adolescents. For example, for children, the increase of risk was from 2.6% to 15%. And for the adolescents, compared to the non-infected adolescents, the risk increased from 5% to 19%.

Host Amber Smith: Why do you think it was higher for the younger children?

Yanli Zhang-James, MD: That's an interesting question. Certainly the children's brains are less mature. They're more vulnerable for potentially dysregulated immune functions, those insult into their developing brains. I think other explanation could also potentially involve, for example, less coping skills to deal with social isolation, the stress in the family. I think it's a combination of the unique risk period and environmental factors.

Host Amber Smith: Did you see variations based on gender?

Yanli Zhang-James, MD: We did. We found significant gender-based differences in the mental health outcomes. Primarily we saw highest risk in female adolescents, followed by male children, and then male adolescents, then female children.

So it seems like the female, girls, had a higher risk during adolescence, but the boys had a higher risk in childhood. While this may suggest that boys are more vulnerable in childhood, girls are more vulnerable in adolescence, but this could potentially just reflect on the diagnostic practice in these two age periods.

We know that neurodevelopmental disorders like ADHD and conduct disorder were more likely to be diagnosed in childhood, and in boys, while mood disorder and anxiety are more likely to be diagnosed in girls during adolescence. I think, certainly more research needs to be done to better understand this biological impact on the gender disparity.

Host Amber Smith: Did you look at differences between how severe of an infection the person had?

Yanli Zhang-James, MD: We did. We observed an interesting dose response relationship where more severe COVID cases were linked to higher risk of mental disorder diagnosis. So for example, we compared between inpatient and outpatient COVID cases. We also compared those who simply tested positive compared to those who also had confirmed diagnostic codes. So these are potentially different severities.

Host Amber Smith: Now, your study didn't get into the reasons why the risk for psychiatric diagnoses increase. But do you have theories about that, why this goes up and if it's biologic? Is it caused by the virus, or is it caused by, a lot of us were in lockdown for quite a while, and there was a huge impact on our lives. Did that play into this more?

Yanli Zhang-James, MD: You are absolutely right. It's a combination of both. The leading hypothesis, I think, is about centered around neuroinflammation. When you have a severe infection certainly there's a host of immune responses in our body, and during the infections are for example, the barrier between brain and blood could potentially be weakened and more permeable. So these molecules can potentially impact brain function. But besides these biological reasons, psychosocial stress certainly plays a significant role that could potentially change our brain functions.

Host Amber Smith: And you said historically there's evidence, other serious respiratory infections this has been seen in. You mentioned the 1918 flu pandemic.

Yanli Zhang-James, MD: Yeah, that's very interesting to me. Initially, the increase of minimal brain dysfunction, for example, in the decades following that pandemic. And now we know that's a terminology for ADHD. In 1950s and sixties, some of the leading experts did suggest that infections such as this could lead to more neurodevelopmental disorders in years and decades following a pandemic such as this.

Dr. James Swanson -- he's a leading ADHD expert -- and Dr. Nora Volkow, the director of National Institute on Drug Abuse, wrote a letter and the title was "Lessons from 1918 Flu Pandemic, A Novel Ideological Subtype of ADHD," highlighting that the hypothesis that we may be seeing more ADHD diagnosed in coming years and decades.

But our research clearly showed that we're going to see a lot more diagnosis of a wide range of mental disorders.

Host Amber Smith: What is the takeaway message from your study, in terms of what do parents of children who had COVID need to be aware of?

Yanli Zhang-James, MD: Our study is a clinical epidemiology study. It looks at the association or correlation. It's not a causation. So we're not saying that, for sure, cOVID is causing mental disorders, but the association is strong and clear, whether it's through neuroinflammation, immune dysregulation or psychosocial effect of having the infection itself, or the compounding effect of pandemic isolation, the psychosocial stress associated with all that.

COVID-19, it definitely has a significant and long-lasting impact on the youth mental health, and early screening and monitoring for these mental health concerns in youth, particularly among those who are already at risk, is important. I think interventions and improved support for at-risk youth should be a public health priority.

So communicating with the public about these concerns and is certainly a main interest of me and our colleagues. For parents, I think this research highlighted that we -- myself included; I'm a parent -- we should be fully aware that there could be mental health challenges emerging after an infection. It could be months or years later. We need to watch out for symptoms, a wide range of symptoms. For example: persistent sadness, excessive worry, social withdrawal, irritability, aggression, problems at school, problems with sleep. If there's something off, reach out to pediatrician, to mental health professionals to seek help.

There should be also implications for pediatricians. Incorporating mental health screening is important for even routine pediatric visits, particularly for those kids who had COVID previously. And I think pediatricians should play a critical role in educating public, their patients and their family, their parents, about research findings such as ours. I think informing their patients and their family about the potential long-term impact is important, and encouraging them to seek help, if needed.

Host Amber Smith: Thank you so much for making time for this interview, Dr. Zhang-James.

Yanli Zhang-James, MD: Thank you.

Host Amber Smith: My guest has been Dr. Yanli Zhang-James. She's an associate professor of psychiatry and behavioral sciences at Upstate. I'm Amber Smith for Upstate's "Health Link on Air."

How talking prescription bottles work -- next on Upstate's "HealthLink on Air."

From Upstate Medical University in Syracuse, New York, I'm Amber Smith. This is "HealthLink on Air."

The Upstate Outpatient Pharmacy offers talking prescription bottles for non-English-speaking patients or patients who are visually impaired. To learn more about this program, I'm talking with Christina Hyde, the associate director of pharmacy utilization and development at Upstate.

Welcome back to "HealthLink on Air," Dr. Hyde.

Christina Hyde, ND: Thank you so much. It's wonderful to be here.

Host Amber Smith: Before we talk about this new program, let me ask you to explain your credentials. You have the initials ND after your name. What is that?

Christina Hyde, ND: ND stands for Naturopathic Doctor. A naturopathic doctor is a physician that practices integrative primary care. We use a combination of both Western, or allopathic, medicine and evidence-based complementary and alternative modalities to diagnose and treat disease.

Host Amber Smith: I see. All right, so tell us about these talking prescription bottles. What's the name of this program?

Christina Hyde, ND: The name of the program is called ScriptTalk. And we are just so excited to be able to introduce it to the Upstate community and to Syracuse.

Host Amber Smith: So tell us how it works.

Christina Hyde, ND: The program is set up to use an RFID sticker that we print in the pharmacy. Those stickers are applied to the prescription bottle, a bottle of eyedrops, for example. And then that RFID interacts with either a reader or an application on a patient's phone to give them information and directions about the prescription.

Host Amber Smith: So RFID, is it like a scan code or something?

Christina Hyde, ND: Yeah. So an RFID is essentially a scannable barcode. And it allows the device to interact and capture the information that's been preloaded by the program that we use on our computers.

Host Amber Smith: How many languages is it available in?

Christina Hyde, ND: It's available in 15 languages that can be read by the device and both the iOS and Android platforms. And then there are five additional languages that can be read by one or more of those devices.

Host Amber Smith: Can you share with us what it sounds like?

Christina Hyde, ND: So I'm just going to turn the device on.

ScriptTalk: ScriptTalk Station ready.

Patient: Rose Test - Flower (a fictitious patient).

Medication: Amlodipine besylate, 5 milligram tablet.

Instructions: Take one tablet by mouth once a day.

Warning: May cause, dizziness.

Warning: This drug may impair the ability to operate a vehicle, vessel, for example, boat or machinery. Use care until you become familiar with its effects.

Warning: It's very important that you take or use this exactly as directed. Do not skip doses or discontinue unless directed by your doctor.

Quantity: 30.

Prescription date: January 29, 2025.

Expiration date: January 29, 2026.

Refills remaining: One, refillable until January 29, 2026.

Prescriber: Test, Upstate Outpatient Pharmacy at Nappi.

To reorder this prescription, dial 315-464-9194.

Prescription number: 36060697. For more info, dial 315-464-4380. Enter code 9010.

Christina Hyde, ND: You can see it's extremely comprehensive. It will read on the device the entire prescription label. So if somebody is interested in all of that information, they can get that with the device. They can also get it off of the apps. One of the benefits of the apps, which are both iOS and Android, are that there's a short feature. So somebody can just place the bottle on and hear what medication it is, essentially, and what dose they're supposed to take. So if it's a regular medication, and they don't need all of that information every single time, they can just place the bottle on their phone when they have the app downloaded, and it will say, "amlodipine, take this much, this many times a day."

Host Amber Smith: So I'm thinking of a medicine cabinet that has a bunch of bottles in it. And if you're visually impaired in some way, it's difficult to tell one bottle from the other. So you would pull them out, and it would be read to you, so you would take the right thing.

Christina Hyde, ND: We are really hoping. Everything we do is to try to increase patient access, ease of use for medications. And we hope that this really solves a problem for both visually impaired and non-English-speaking patients. It is very difficult, and we know from reports that patients who are visually impaired will employ devices like putting their medications in different areas of their homes to try to remember which they should take when. And so this really does answer a need.

We're especially excited to work with the Vision Clinic around things like eye drops, which can be very complicated, where there are several different eye drops, and people take them at different times in the day. So there really is a lot of opportunity here to support patients who are currently struggling.

Host Amber Smith: This is Upstate's "HealthLink on Air," with your host Amber Smith. I'm talking with Christina Hyde, the associate director of pharmacy utilization and development at Upstate.

So who is eligible for ScriptTalk?

Christina Hyde, ND: Anybody whose provider feels like they would benefit from the program is eligible.

Host Amber Smith: What does it cost?

Christina Hyde, ND: It's free to the patient. All that would need to happen is that the provider send to our pharmacy the prescription with a note, "ScriptTalk," and we would fill in vials that have the RFID check on them. And then within 24 to 48 hours, the company actually outreaches the patient and teaches them how to use the technology.

So not only do they have interaction with our pharmacy and an introduction to what they're getting and what that's going to look like, but the company outreaches them and goes through a full onboarding.

Host Amber Smith: If they are not going to use the app on their phone, how do they get that device, and how big is it? How much space does it take up?

Christina Hyde, ND: The device is about the size, it's smaller than a fire detector, is how I describe it. It's quite reasonably sized. It does not, I'm holding it up, which doesn't help anybody who's listening, but it's essentially the size of a small fire detector.

Host Amber Smith: I'd like to ask you about another feature that's available for prescriptions at the Upstate Outpatient Pharmacy. How do the locking bottles for narcotics work? I've heard about those, but how do they work?

Christina Hyde, ND: Our Save RX vials. Oh, we're extremely proud of this program. So the locking prescription vials are exactly what the name implies. They are vials that have a combination set on them, and the goal of that, and the reason we use them, is we dispense narcotic medication in them.

We know from data and investigation that the real entry point for abuse of substances such as opioids is pilfering, so people taking medications that are in the home, or patients sharing, not really thinking, probably no ill intent, but a family member pulls their back and they say, "Oh, I have this medication."

So the locking prescription vials really serve two purposes. They secure the medication so that the patient is the only one that has access. We set a code. We teach the patient how to use it. We have a pretty extensive teach that we do with the patient on the importance of safe medication storage. And then we talk to them about the locking mechanism and the fact that they have to go through this process serving as a reminder that this is a very serious thing. This is a controlled substance. This is not something to be sharing with people to whom it was not prescribed.

So we have had that in place for a couple of years now. We are actually conducting a survey with patients to whom we dispense medications in these vials to gauge their feedback on how useful it is, how engaged it has them in understanding the dangers of sharing opioids, the importance of safe medication storage, and to really just see how that experience is for them.

Host Amber Smith: Now, will those locking bottles work with the ScriptTalk program?

Christina Hyde, ND: Currently it's not applicable. The locking prescription vials are used for discharge narcotic medications. So when a patient is discharged from the hospital, they are provided the medications in the safe RX locking prescription vials.

The ScriptTalk bottles are prescriptions that a patient will be taking regularly, and they'll be refilled, so they're a little "apple to oranges."

Host Amber Smith: Gotcha. Well, as we wrap up, let's give listeners a phone number or a website for more information about the ScriptTalk, if they're interested in that.

Christina Hyde, ND: So ScriptTalk is currently dispensed out of our Nappi (Wellness Institute) pharmacy. Where the prescriptions are filled, where we have the computer and the sticker printer is at Nappi. We can obviously courier and ship anywhere. So to reach the Nappi pharmacy directly, patients would call (315-464-4380, or they can visit us at upstate.edu/outpatientpharmacy. Or simply search "Upstate Outpatient Pharmacy services" to be taken directly to our website.

Host Amber Smith: Well, I appreciate you making time for this interview, Dr. Hyde.

Christina Hyde, ND: Thank you so much. It's been wonderful to speak with you.

Host Amber Smith: My guest has been Upstate's associate director of pharmacy utilization and development, Christina Hyde. I'm Amber Smith for Upstate's "HealthLink on Air."

Next on Upstate's "Health Link on Air" -- Does the heart, lungs, or brain determine when someone dies?

From Upstate Medical University in Syracuse, New York, I'm Amber Smith.

This is "HealthLink On Air." We'll explore some of the controversies surrounding brain death with Upstate bioethicist L. Syd Johnson, who has written a new book called "Philosophical, Medical, and Legal Controversies About Brain Death." Dr. Johnson is an associate professor of bioethics and humanities at Upstate.

Welcome back to "HealthLink on Air," Dr. Johnson.

L. Syd Johnson, PhD: Thank you, Amber. I'm happy to be here.

Host Amber Smith: Is it the heart, the lungs or the brain that determine if a person has died?

L. Syd Johnson, PhD: This is a surprisingly complicated question, given that death is a universal part of life. At the most basic, we can say that an entity is dead when the biological processes that maintain life cease. For humans and for other animals, that would usually be respiration and circulation. And traditionally, it was understood that an animal or human died when they stopped breathing. But there is some variation about beliefs about death as a social and a spiritual and a cultural phenomenon.

And death in many belief systems occurs when the soul leaves the body. This is, of course, not something we can measure, medically speaking. But almost universally among human cultures, there is agreement that death occurs when breathing stops and when the heart stops. This also indicates in some belief systems that the soul has departed, and that it's appropriate for us to begin our death behaviors, the traditions and the rituals that we perform when someone has died.

So the loss of circulation and respiration is also considered death in medicine. The primary difference there is that in medicine today, we actually have the ability to reverse the cessation of respiration and circulation by resuscitating patients, at least some of the time. But the concept of brain death emerged alongside developments in critical care medicine, including the invention of respirators and ventilators that could support lung functions and resuscitation, cardiac bypass for the heart -- so things that occurred around the middle of the 20th century.

And it didn't take very long before doctors began to question the value of maintaining life in patients who had severe brain injuries. They could be kept alive with medical technology, but there wasn't much that we could do to treat their brain injuries. So there was this possibility of patients being kept alive long-term in an untreatable and irreversible coma, and that's where the concept of brain death first emerged. The death of the brain, but not the body.

Host Amber Smith: So, brain death: How do we determine when the brain has stopped? Because the brain needs the blood circulation and the oxygen. If we withdraw that, does that mean that the brain dies?

L. Syd Johnson, PhD: The brain will not survive for very long in the absence of circulation and the absence of oxygen, right? So the brain is very sensitive to being deprived of those two things. Currently, there are basically two main sets of criteria for determining brain death, and one is called whole brain death, and the other is called brainstem death.

And whole brain death is the legal standard that we use in the United States. Our state laws define the criteria for determining death, and whole brain death is the irreversible cessation of all functions of the entire brain, including the brain stem. And then we also have criteria for circulatory respiratory death, which is irreversible cessation of all circulation and respiratory functions.

In some countries, including the United Kingdom for example, they use a brain-stem death standard. And that standard defines death as the irreversible loss of consciousness and the irreversible loss of the capacity to breathe. And those are two functions that are regulated by the reticular activating system, which is part of the brain stem.

The interesting thing here is that the diagnostic criteria that we use for the brain-stem death and for whole brain death are basically the same. And the reason for this is that it isn't really possible to diagnose whole brain death or the loss of all functions of the entire brain. Today we know that some patients who are diagnosed as brain dead might still have some electrical activity in their brains. They might also continue to have some functioning in some isolated parts of the brain.

We don't have tests that can determine that every single part of the brain is nonfunctioning. So we use surrogate tests, and those are basically the same tests that we use to determine brain-stem death -- the loss of consciousness, the loss of the ability to breathe, and the loss of brain-stem reflexes. So this is basically the same diagnostic battery used to determine brain death in both cases. We also have some additional tests that might look at images of brain perfusion, so we could see if there is actually blood circulation happening in the brain.

Host Amber Smith: So if someone is hooked up to a machine for their heart and lungs, to keep those pumping and working, and that will keep the brain alive, will the brain eventually die? Or can you keep it alive indefinitely with machines?

L. Syd Johnson, PhD: One thing that frequently causes brain death is that there's an injury to the brain that makes the brain swell. This is called cerebral edema. And of course our brains are encased in a skull, a little hard shell to protect them. So there's not a lot of room for that brain to expand when something like that happens. And that swelling of the brain can be really catastrophic, and it can result in additional injury to the brain, above and beyond whatever it was that caused the initial injury that happened.

And when that swelling occurs, that can actually cut off the blood supply to the brain. And that, in theory, is going to result in brain injury to the entire brain and to the death of the entire brain. It doesn't always happen. There isn't always that kind of global loss of brain function, and so as I said, sometimes we might see isolated of areas of the brain continue to function.

There are cases where there's been long-term survival of the body in brain death. The brain sometimes continues to deteriorate during that process. There have been instances of pregnant patients who have been kept on life support, so they could continue to gestate the fetus until they're able to give birth. There have been a few cases of children who have undergone puberty and proportional growth while diagnosed as brain dead. Your hair can grow. Your body can continue to perform at sort of basic functions like excreting and absorbing nutrition and things like that. So the bodies can remain alive. The brain may end up in a sort of stasis where it stays in its initial injured state, or it may further deteriorate.

Host Amber Smith: This is Upstate's "HealthLink on Air," with your host, Amber Smith. I'm talking with associate professor of bioethics and humanities, Dr. L. Syd Johnson, about brain death.

What is a medical/legal definition of death?

L. Syd Johnson, PhD: So brain death first emerged in the U.S. In the late 1960s. There was a report from a committee at Harvard that determined what the criteria would be for what they were calling irreversible coma, which is sort of our first standard for brain death.

And that eventually becomes the legal standard after states amended their laws to include brain death. And so this is generally accepted both in law and in medicine, and that would be what I would call that medicolegal definition, right? The loss of certain critical functions within the brain counts as death. It counts both as legal death and as medical death.

Host Amber Smith: And that is in the United States, or is that accepted globally?

L. Syd Johnson, PhD: Brain death is something that can only occur in a context where you have intensive care medical treatment available. So someone who stops breathing -- and an individual who is going to be diagnosed as brain dead will not be able to breathe on their own -- someone who stops breathing in a place where we don't have critical care medicine will simply die within a few minutes, right? There's just no question about that.

So in a context like the United States, countries in Europe, many other places in the world where we have sophisticated medical technology available, brain death is possible. It's possible that we can keep that body alive but have a brain that is severely injured, severely damaged.

Now, there is variation across cultures and religions about what counts as death and about when death occurs. So even in countries that have, for example, sophisticated medical technology, there may not be agreement that there is something like brain death or that brain death counts as what we might think of as true death.

We have nearly universal agreement that when there's no heartbeat and no breathing, that that individual has died. And of course this is also one way that we determine death in the United States and many other countries. It's the traditional way. It's still valid. And some cultures and spiritual traditions only accept that circulatory/respiratory way of being dead and do not accept brain death in which the heart continues to beat as being true death.

Host Amber Smith: What are the medical and legal controversies that are out there about brain death?

L. Syd Johnson, PhD: For medicine there are some serious epistemic challenges, and those are challenges about how we know that something has happened. And doctors, of course, have to communicate with families about patients. They are the ones who have to determine that death has occurred and declare that death has occurred.

Not all doctors agree that brain death is what we say it is, that it is truly death. Not all agree that the clinical guidelines that currently exist are adequate for determining what we think of as brain death.

In the United States, the clinical guidelines are established by organizations like the American Academy of Neurology. And they've actually changed over time as medical technology has changed and as our knowledge has changed, so that they're no longer actually exactly in alignment with the law on brain death, right? The law says irreversible cessation of all functions of the entire brain. But we actually can't determine that in the vast majority of cases.

We can't diagnose the loss of all functions of the entire brain. So a knowledgeable neurologist has to contend with that as well, with this understanding that when they tell a family that their loved one is brain dead, that they're not perhaps conforming exactly to the legal standard but what is the best approximation, the closest that we can get.

In the U.S. there are also, frequently, court cases where a family objects to the brain death determination or objects to the brain death examination. And really, courts are not the best place to decide these kinds of situations, right? We're talking about really, really important and fundamental cultural and spiritual and personal beliefs and world views here. And I think it's really important that we remember that the belief that death only occurs when the heart stops and when breathing stops is actually a valid, medically accepted, medically diagnosable death. It's not controversial, really, for anyone. But there does remain some controversy about brain death.

Host Amber Smith: What about metaphysical controversies?

L. Syd Johnson, PhD: The metaphysical controversies are controversies about what is or what exists. And in the context of brain death, it concerns whether brain death is actually death, or whether it is the same thing as biological death, or what is meant by biological death.

Death is not really a unitary phenomenon. It's not a single phenomenon for us anymore, and it's also this complex social and cultural and spiritual phenomenon. It involves our legal rights. It marks the difference between being a person with rights and being a former person, a former member of the moral community and of human society. It marks the point where we can bury you and cremate you or distribute your property according to your will. It's the point when your spouse becomes a widow or a widower.

So one view of brain death is that it isn't actually what we often think of as death, right? This state in which you cease to be a person, cease to matter morally. But it's rather a kind of legal fiction, a kind of close-enough state, in which it's appropriate for us to act as if you are actually dead. Your organs can be donated if that's what you wanted. You no longer have a right to medical treatment, and you're no longer someone we have to treat as if you are a living person.

Host Amber Smith: Are there philosophical controversies about brain death?

L. Syd Johnson, PhD: Well, I'll focus on ethical controversies. Brain death imposes and enforces a particular moral and metaphysical worldview in a way that can be really onerous when it is brought to bear, specifically, on people who deny it, who don't believe it.

It doesn't do that in a way that extends rights or protects the affected individual from serious harm. I mentioned the status of being a legal fiction. One example of a legal fiction is that we decide the point at which you become a legal adult when you turn 18 years old. Now, the difference between you at 17 and 364 days, and the difference between you at 18 years is minuscule, right? There's virtually no difference in who you are in that time, but we've decided this is the appropriate point when we can start treating you as an adult. So that's a kind of legal fiction that actually extends rights to you, gives you rights to do certain things that you weren't able to do before then, for example, vote, right?

Brain death as a legal fiction doesn't do that. It actually takes rights away from the individual, right? You lose your right to medical treatment to being treated as a living human being. So it abolishes certain rights of those who are judged to be brain dead. Now, those who deny that brain death is really death are in the minority. I think for most people, brain death is close enough, right? They don't want to continue when they're in a state where their brain is almost all but nonfunctioning. They don't want to spend the rest of their life in a hospital bed. But those who don't accept that are likely to be subjected to involuntary withdrawal of life-sustaining treatment. In some cases, organs have been procured from individuals against the wishes of their family. It's not unreasonable to say that death requires that the heart stops and that breathing ceases, right? This is the traditional way of understanding death. It's also a scientifically, medically accepted way.

So I think we should accept that when people offer that as the alternative, that will be acceptable to them. But the burdens for people who only accept that traditional understanding of death can be pretty significant. And they're not benign. They're not equally distributed, right? Only those who reject brain death can be subject to that involuntary withdrawal or organ procurement.

They're going to see their loved ones stripped of their rights and lose their own rights to make decisions about what happens to their family members because laws have coercive force, right? And we can compel this definition of personhood that may not be compatible with an individual's own moral and philosophical and cultural and spiritual beliefs in a way that could easily be oppressive, or as might be viewed as medically sanctioned neglect.

Host Amber Smith: Why did you decide to write a book on this topic?

L. Syd Johnson, PhD: I first became interested in brain death through a case in 2013 involving a 12-year-old girl named Jahi McMath. This happened in California. She was declared brain dead after postoperative bleeding that caused her heart to stop for a prolonged period of time. Her mother rejected brain death on religious grounds and said that she would not consider her daughter dead until her heart stopped beating. This was a highly publicized case, and what really got my attention about it was the way that this child's family was being treated, which I thought was really appalling.

They were publicly criticized by doctors but also by other bioethicists who call them delusional, for example. The more I started looking at brain death, the more I realized that it has in fact been controversial all along, since the 1960s when we first see the idea promulgated.

Now it turned out Jahi survived for four years with life support after she was diagnosed as brain dead. There's some evidence that she may even have recovered some brain function, which would make her an extremely unusual case. But my main interest, both then and continuing today, has been in defending the rights of people who oppose this medicolegal dogma about brain death and ensuring that they are also treated justly and equally by our medical and legal systems.

Host Amber Smith: Well, Dr. Johnson, I appreciate you making time for this interview. Thank you for telling us about your new book.

L. Syd Johnson, PhD: Thanks very much.

Host Amber Smith: My guest has been Dr. L. Syd Johnson, an associate professor of bioethics and humanities at Upstate, and author of the new book, "Philosophical, Medical, and Legal Controversies About Brain Death."

I'm Amber Smith for Upstate's "HealthLink on Air."

And now, Deirdre Neilen, editor of Upstate Medical University's literary and visual arts journal, The Healing Muse, with this week's selection.

Deirdre Neilen, PhD: Almost daily, newspaper articles, podcasts, TV shows urge us to seek connections, to maintain ties to each other and thereby help ourselves to better health. Poet Wally Swist shows us such a moment in a locked room, in a ward where one friend seeks to push back the isolation threatening the other. Here is his poem "Interconnectedness."

"Is this connected to everything else?"

you ask, venerable explorer

of supreme consciousness, cloud-

watcher and observer of what

wind does to leafy branches

in the tree break. Although now

you look only at objects

in your room on a locked ward,

the titles of books I've turned

so they display their identities,

when you ask the metaphysical

question regarding connectivity.

Whitman saw what you're seeing,

the cosmos in a leaf of green grass.

You no longer loaf and invite

your soul, but you do see the one

in the all, Basho's frog leaping

before the pond's splash,

Buddha's guidance about

the finger pointing at the moon,

whereas the finger guides us

as teaching, and the moon

radiates pure mind. Whenever

you ask, your finger pointing,

often from a page of a book

I'm reading to you, whether

the French toast I'm feeding you

for breakfast, to the tulips

behind the glass in the photograph

on the wall, and whether they're

connected, I pause, thoughtfully,

and look at you with as much

kindness as I can muster, and

announce, since I am convinced

by now, "Yes, I believe they are."

Host Amber Smith: This has been Upstate's "HealthLink on Air," brought to you each week by Upstate Medical University in Syracuse, New York.

If you missed any of today's show, or for more information on a variety of health, science and medical topics, visit our website at healthlinkonair.org.

Upstate's "Health Link on Air" is produced by Jim Howe, with sound engineering by Bill Broeckel and graphic design by Dan Cameron.

This is your host, Amber Smith, thanking you for listening.