Bioethicist explores controversies and definitions about death

Host Amber Smith: Upstate Medical University in Syracuse, New York invites you to be "The Informed Patient," with the podcast that features experts from Central New York's only academic medical center. I'm your host, Amber Smith. We'll explore some of the controversies surrounding brain death with Upstate bioethicist L. Syd Johnson, who has written a 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 "The Informed Patient," 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 secession 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 brainstem. 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 brainstem 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 brainstem.

The interesting thing here is that the diagnostic criteria that we use for the brainstem 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 non-functioning. So we use surrogate tests, and those are basically the same tests that we use to determine brainstem death -- the loss of consciousness, the loss of the ability to breathe, and the loss of brainstem 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 "The Informed Patient" podcast. I'm 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 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 non-functioning. 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." "The Informed Patient" is a podcast covering health, science and medicine, brought to you by Upstate Medical University in Syracuse, New York, and produced by Jim Howe with sound engineering by Bill Broeckel and graphic design by Dan Cameron. Find our archive of previous episodes at upstate.edu/informed. If you enjoyed this episode, please invite a friend to listen. You can also rate and review "The Informed Patient" podcast on Spotify, Apple podcasts, YouTube, or wherever you tune in. This is your host, Amber Smith, thanking you for listening.