Blurring The Line Between Life And Death
TERRY GROSS, HOST:
This is FRESH AIR. I'm Terry Gross. My guest, Dick Teresi, is the author of a new book about how medicine is blurring the line between life and death. For example, if you have opted to be an organ donor, if you are declared brain-dead after that declaration, you may be placed back on a ventilator to keep your lungs working and heart beating until after the organ removal process.
Last week in a Wall Street Journal article adapted from his book, Teresi said that when we choose to be organ donors, we are not really giving our informed consent, and he laid out some facts about organ donation that you may not know.
But doctors and others who work with organ donation programs say that Teresi is unnecessarily frightening people and could discourage people from becoming organ donors. We're going to hear from Teresi and then from transplant surgeon Dr. Richard Freeman, chair of the Department of Surgery at Dartmouth Medical School.
Dick Teresi's new book is called "The Undead." He's also co-author of "The God Particle" and the author of "Lost Discoveries: The Ancient Roots of Modern Science." He's a former editor-in-chief of Science Digest, Longevity and Omni.
Dick Teresi, welcome to FRESH AIR. One of the blurring lines between life and death is something that you write about when a pregnant woman is declared brain-dead. She can be kept on life support for the sake of the child that she's carrying, depending on how advanced the pregnancy is. And, you know, there have been instances where the woman has been kept on life support until the baby can be delivered. How often does that happen?
DICK TERESI: Since about 1981, it's happened 22 times. There have been 22 women kept on life support after they're declared brain-dead and who gave birth.
GROSS: And how does that blur the line between life and death?
TERESI: Well, I would just think that gestating a baby and giving birth is a sign of life.
GROSS: Let's start with a story that you tell at the beginning of the book, the story of a patient in an ICU unit. She's declared brain-dead. Then what happens?
TERESI: Well, the interesting thing about being declared brain-dead is that the expression "pull the plug" is not really applicable. They do pull the plug in the final stage of the exam for brain-death, which is to say they disconnect the ventilator to see if the patient can breathe on her own, and in this case she couldn't. And because she could not breathe on her own - she didn't gasp for air - that means she's officially brain-dead.
What happens then is that the ventilator is reconnected. It has to be reconnected if this person's organs are going to be harvested because the whole point of brain-death is to select people for organ donation who are mostly dead. They're still a little bit alive, meaning that you turn the ventilator back on, the lungs will continue to work, she'll continue to breathe, her heart will then restart, continue to pump blood, keeping the organs fresh for transplant.
The hearts are still beating in brain-dead people who are being quote-unquote kept alive, and they can get heart attacks, so that you'll see a crash unit going to a - responding to a code blue, and it'll be a dead person, and they'll quote-unquote resuscitate them with the defibrillator paddles.
GROSS: So what does that say about what the new meaning of dead is?
TERESI: Well, the new meaning of dead is, for most people, is pretty much the old meaning, which is your heart stops, you stop breathing, and they can't restart you. That's very important, the inability to restart you because death is supposed to be irreversible.
The new meaning, this - which applies to maybe one percent of the population of brain death - is what one doctor called pretty dead. You're dead enough so they can legally take your organs but not so dead that those organs aren't any good.
GROSS: One of the things you write about is a test to determine death that a Harvard committee of doctors wrote up, and this was - when did they do this?
GROSS: And tell us what this test is for determining death.
TERESI: Well, these were 13 men, Harvard Medical School, and they came up with a simple test for telling when a person was dead. And there was - it simply meant that you didn't have responses, you weren't moving, you were unresponsive. They didn't have many details of how to determine this. And then what's called the apnea test, where the ventilator is stopped, and the doctor tries - sees if you can gasp on your own, if you can breathe on your own.
So when you - it's proved that you cannot breathe on your own, and there's no movement, no reaction, then you're brain-dead. They had a fourth criterion, which was an EEG, which they said was a confirmatory test.
GROSS: So does a test like this always have to be administered, or are there certain conditions in which it's more ambiguous if you're alive or you're dead and you need a test like this?
TERESI: It would not be administered if your heart had stopped. Your heart - when your heart stops beating, and you stop breathing, that's usually good enough for death. The problem is at that point, you are not a very good organ donor. So if you have someone who is - say, has head trauma from an accident or has had an aneurism, those are the most common instances of brain death, but whose heart is still going and who's still breathing on a ventilator, then you might declare the - use the brain-death test.
GROSS: And if a person is declared brain-dead, what are the legalities of either taking them off or leaving them on life support, and who determines that? Is it the doctor or the family or the papers that the person has left behind sharing their wishes?
TERESI: At this point, as George Annis, who is a lawyer who studied this, he says, you're in or you're out. You're either alive or you're dead. And if you're proclaimed brain-dead, then you have lost all your constitutional rights, and they can turn the ventilator off forever, or they can keep it going, and there's no time limit.
There's this problem, is that you're dead. You're legally dead. It doesn't matter that you're still breathing with a ventilator, that you're still getting bedsores, that you get diabetes. All these things happen to you after you've been declared brain-dead.
GROSS: Now, your writing and your lectures on this subject of how bodies are kept going on ventilators until organs are harvested, and this is, as you say, only in, like, less than one percent of people who die - I mean it's not like everybody goes through this. But anyways, your writing and speaking about this is making a lot of people really angry because organ donation is very important, and some people are afraid that what you're saying will discourage people from signing up for organ donation, and I think that's a legitimate concern, that what you're saying might scare some people.
TERESI: Well, it's a topic I got into not knowing what I was going to find. I went off to write a book about death, per se. What is it from a scientific point of view? And I started with a very basic question: How do we tell when a person's dead? And that ended up being the entire book because I thought it was a very simple question, and it turns out not to be a simple question at all.
And my role is that of a journalist, and you don't change the facts to assuage people's feelings.
GROSS: Dick Teresi is the author of the new book "The Undead," about how medical technology is blurring the line between life and death. Many transplant surgeons, including my next guest, object to how Dick Teresi describes the organ donor process and fear that he's unnecessarily scaring people.
My guest, Dr. Richard Freeman, is chair of the Department of Surgery at Dartmouth Medical School. He's a board member of the Organ Procurement Treatment and Transplantation Network and serves on the board of trustees at the New England Organ Bank. He's been a transplant surgeon for 25 years.
Dr. Freeman, welcome to FRESH AIR. I want - I don't usually talk about myself on the show, but I want to start by saying I've always checked the organ donor box on my driver's license and I intend to keep doing that. But in interviewing Dick Teresi, I started thinking about what I don't know about what it means to be an organ donor, and that's why we all so much wanted to hear from you.
What I found most surprising in talking to Dick Teresi was that if you've been declared brain-dead, after you've been taken off the ventilator, you're put back on it so that your body can continue to support the organs that you wanted to donate.
It seems at that point you're neither fully dead nor fully alive. What state do you call that?
RICHARD FREEMAN: Well, you're absolutely dead. The removal from the ventilator for the temporary period of time that he describes is actually not - it doesn't have anything to do - it's a test that we use to confirm brain death. So...
GROSS: Describe the test.
FREEMAN: It's called an apnea test, and essentially for a short period of time the potential donor's removed from the mechanical ventilation to see if they breathe, and if they don't breathe, they're brain-dead. Their heart may be still beating, is still beating in that situation, but if they don't breathe, they're brain-dead.
GROSS: And you can determine that because it's the brain, it's a certain part of the brain that controls the respiratory system, and if they're not - if you're not breathing, it means that part of the brain isn't functioning.
FREEMAN: It's one of the most primitive parts of the brain, and so if that most primitive part of the brain is not functioning, the brain, any other higher function of the brain, is also not functioning. And that is, you know, the sine qua non for determining brain death.
GROSS: So if you've determined brain death, the person's been taken off the ventilator, they can't breathe.
GROSS: So therefore they are legally dead.
GROSS: But if they want to be an organ donor, then they're put back on the ventilator to keep the organs fresh until they're ready to be removed.
FREEMAN: Yeah, fresh is probably not the right word.
GROSS: Thank you. You know, the language for this is so baffling to me. I really don't know enough to know what words to use. We were talking before this interview, words really matter in a situation like this.
FREEMAN: Words always matter in all situations, but in this situation in particular, the first most important thing that all of us in the field want to keep in mind is respect for the donor, for the donor's body, the donor family, and that's why words really matter in this situation.
And so the organs, the oxygenation that is required to maintain good organ function, is why the person is put back on the ventilator after the apnea test.
GROSS: So what state is that body in? You've said the body is dead, it's just clearly dead.
FREEMAN: The person is dead.
GROSS: The person is dead...
GROSS: ...but the body is still ticking, so to speak. The heart is working, the lungs are working, because they're being made artificially to work through the ventilator. So the body still has vital signs. But you're saying the person is dead. So it's a state I'm not used to thinking about, this kind of pulsing body that's legally dead.
FREEMAN: That's essentially the situation, but the person - it's not even legal. It's physiologically this person is dead. So before there was ventilators, there was never this issue because once your brain stopped functioning to make you breathe, the oxygen stopped being delivered to the organs, and your heart stopped.
But now that we have ventilators, it becomes important to understand other ways that the person dies, and you can maintain oxygen to the organs through the ventilator after they're dead, and that's precisely what happens in this situation.
GROSS: So that's what the organs need, is the oxygen?
FREEMAN: Which is delivered by the blood, yes.
GROSS: Right, OK, so it needs the blood to get the oxygen.
GROSS: So for how long, typically, is a body of a person who is dead kept on a ventilator before the surgical procedure to remove the organs?
FREEMAN: It's a variable amount of time. It depends on getting the surgical teams organized. Sometimes they travel from long distances away. You have to get into the operating room to do the procedure. So it's - it can be a few hours to sometimes more than that. Occasionally too we want to make sure that all of the family that needs to be around for this process or wants to be around for this process is available, and sometimes the donation procedure in the operating room is delayed until other family members arrive.
GROSS: Now, I know a lot of people will be thinking: If the heart is beating, and the lungs are working - and I imagine the body is kept on the ventilator during the surgical procedure to remove the organs?
FREEMAN: Right up to the point that they're removed, yes.
GROSS: Is it conceivable that this body, although legally dead, would experience anything that we would think of as pain?
FREEMAN: No. The sensation of pain requires upper-level brain function, and as we said, the apnea test proves that there is no upper-level brain function. And so it is not possible if somebody has been declared brain-dead by the apnea test or other tests that we use for there to be pain to be experienced.
GROSS: There's an anesthesiologist at the surgical procedure?
FREEMAN: Usually at the beginning of the surgical procedure, that's right.
GROSS: For what function?
FREEMAN: To - well, again, these people frequently are traumatic brain injuries, and they are there to be sure that the oxygen and the blood flow are as good as they can be in this situation, to maintain the organs in this person who is already dead. They do often administer medications to limit the muscle spasms that occur in these situations as reflexes.
So even though the upper brain and the primitive brain is not functioning, the spinal cord, in many cases, still functions. So reflexes, again, a reflex, the word means you don't need your brain to interfere in that process. A reflex happens without your brain being alive, essentially. But they still happen in this situation, and so the anesthesiologist administers medications to limit those reflexes not because the person's alive but because those reflexes interfere with our ability to remove the organs.
GROSS: My guest is organ transplant surgeon Dr. Richard Freeman, chair of the Department of Surgery at Dartmouth Medical School. We'll talk more after a break. This is FRESH AIR.
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GROSS: My guest is Dr. Richard Freeman, who has been an organ transplant surgeon for 25 years. He's chair of the Department of Surgery at Dartmouth Medical School.
Now, is it only people who have been declared legally brain-dead who are candidates for organ donation?
FREEMAN: So yes, there's another way that we procure organs from people who have died, and that is in a situation where the brain is still functioning on some basic level, so the person does not meet the criteria for brain death, but they have a devastating brain injury, and the family and the people delivering the care to this person have all reached the conclusion that it really doesn't make any sense to continue to provide maximal treatment and that the plan, with the family's wishes, is to withdraw the care.
And in most cases that will mean turning the ventilator off or removing the ventilator. Many people, fortunately, feel very strongly that they want to be organ donors and that in a situation where the brain injury is completely irreversible and there's nothing left to be done, they still want to be organ donors, and in that situation we then go through a procedure that is called donation after circulatory death.
And that means that in this case the donor is declared dead because the heart has stopped. Their brain is still functioning at some level, but there's no hope of recovery. The ventilator is turned off, and if the heart stops in a period of time that results in not too long a period of time without oxygen to the organs, then they can qualify to be an organ donor in that situation as well. So that's donation after cardiac death.
GROSS: In a situation like that, where part of the brain had still been functioning, does the issue of pain arise during the surgical procedure to remove the organs?
FREEMAN: No, because the brain - again, it's the final pathway - the final common pathway is no brain function. In the donation after cardiac death situation, the brain has some function, but once the heart stops and the blood stops getting delivered to the brain, the brain then stops functioning too. And just like in the brain-death scenario, once the brain stops functioning, there's no pain sensation. You don't have any sensation of pain.
GROSS: So you're dead long enough before being put on the ventilator to ensure that the brain has ceased to function.
FREEMAN: Well, in the donation after cardiac death, there's no putting back on the ventilator.
GROSS: Oh, I see.
FREEMAN: So you turn the ventilator off, and you wait until you're sure that the heart has stopped beating and is not going to restart again, and generally that's 30 minutes to an hour, sometimes two hours, is an acceptable period of time, and if that occurs, then you proceed to remove the organs. There's no ventilator put back on in that situation.
GROSS: So in a situation like that, the organs have to be removed immediately.
FREEMAN: Yes, well, immediately after the person is declared dead.
GROSS: Exactly, exactly, exactly.
A lot of people have DNRs, do not resuscitate orders, so that they don't want to be kept alive on life support if there's no chance that they will ever recover in a way that they can function on any level, that their brain could really function, that their body could really function.
So if you have a DNR, what does that mean about whether you would be put on a ventilator for the purposes of organ donation?
FREEMAN: Absolutely not. So if you have a do not resuscitate order, that means do not restart the heart if it stops, and in most cases that means do not start the ventilator in the first place. There are some hospitals some places where they separate the do not resuscitate from the do not intubate - intubate means put the breathing tube in your throat and put you on the ventilator.
And if you have those orders in place, those should never happen, in which case you never get to the point of being on the ventilator.
GROSS: Dr. Richard Freeman will be back in the second half of the show. He's a transplant surgeon and chair of the Department of Surgery at Dartmouth Medical School. I'm Terry Gross, and this is FRESH AIR.
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GROSS: This is FRESH AIR. I'm Terry Gross.
We're talking about the process of organ donation. Earlier, we heard from Dick Teresi, author of the new book "The Undead," about how medical technology is blurring the line between life and death.
Perhaps his most provocative example has to do with organ donation. If you have opted to be an organ donor and are declared brain dead, you may be placed back on a ventilator to keep oxygen circulating through your body to support your organs until they are removed.
After speaking with Teresi, we called on Dr. Richard Freeman, who thinks that Teresi may be unnecessarily scaring people and wants to explain how organ donation works and the reasons behind certain procedures. Dr. Freeman has been a transplant surgeon for 25 years and is chair of the Dartmouth Medical School's Department of Surgery.
One of Dick Teresi's points in his book about the blurring line between life and death is that a lot of people who give their consent to be organ donors aren't giving informed consent, because they don't really understand what the process is going to be. They don't understand that they may be declared brain-dead and then maintained on a ventilator until their organs are ready to be removed and transplanted.
Do you think that that should be a game changer for anybody?
FREEMAN: No. And I think it should be the reverse. I think if people understand how compassionate and how thoughtful and how caring the organ donation process is, and how it is an essential part of the end-of-life decision-making that needs to go on for anybody who is in this situation, actually, I think more people would donate.
GROSS: You know, but his - Teresi's attitude is they're intentionally - the organ donation people are intentionally keeping this information away from us because they're concerned that if we knew all this, we wouldn't want to be organ donors.
FREEMAN: I'll say he's flat-out wrong.
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FREEMAN: One, the organ donation community is not intentionally keeping anything from anyone. We want everybody to be as informed as possible about the process and how it happens. And when it does happen, the families who are there, if you're brain dead, you can't feel it. You can't hear it. You can't see it. There's nothing you can do. The process is completely explained repeatedly, and there're personnel spend hours with these families going over what the process is going to be, how is it going to play out, what the sequence that we just discussed is going to be, and precisely get them to understand that. And if the family doesn't wish to proceed, they don't.
GROSS: They have that right to...
FREEMAN: Always. It gets to be interesting when the person who is now brain-dead has signed a donor card and has explicitly said they wish to be an organ donor. And then there's either no family or there's a family member who wishes to go against that person's own wishes - wishes to go against first-person consent.
And usually, when it becomes known that the person's desires to be an organ donor were explicit - that's why we have registries now, and why on these registries there, again, is lots and lots of information about organ donation, what the process is, what happens to the person, the body, what happens after the procedure, what happens during the procedure. All of that is out there on the Web. And I think almost every state in the Union now has a donor registry where somebody can go and register to be an organ donor. And in that process, there's lots of information there.
Mr. Teresi is absolutely incorrect about the fact that people and families are not informed.
GROSS: Once the person is declared brain dead and is legally dead, who has legal rights in that situation - you know, in determining what should happen after the death? Or are you assuming everybody already knows and the decision's made, and that's all done?
FREEMAN: The right of the individual to say - to declare that they want to be an organ donor, those are the legal rights that get executed. I'm not a lawyer, so I do want to go too far, here, but it is their right to declare that they want to be an organ donor or not. And if they declare they want to be an organ donor, then the organ procurement organization's role is to be sure that those wishes are carried out.
GROSS: So the idea of your body being on what we call life support so that your lungs can take in oxygen and your heart can pump blood to circulate oxygen to the organs that are to be donated, this idea of the body still being on quote, "life support," even after the person's been declared dead, it does seem to, like, blur the line between what do we mean when we say life and death.
And it goes to the heart of, like, a very essential question, which is: What is the difference between the body and the animating spirit, or the body and the soul or the body and personhood, like whatever words you want to use? And it also kind of raises the question: Does the body want to be at rest after the animating force, whatever you want to call it, has departed? Or is it an affront to the body to be kept in that kind of limbo state? Does it matter at all? And I wonder if you ask yourself this kind of question a lot.
FREEMAN: The answer is all the time, and not just in the terms of organ donation. That's one of the things that I find so fascinating and intriguing and wonderful about transplantation. I'm a surgeon, so I do the technical things about it. But this is really the heart of the matter, really is the heart of the matter. So, do you believe in life after death? Transplantation is life after death, if you think about it. It is the - you know, the basis of almost every religion is do unto others as you would have done to you. And when people agree to be organ donors, it is one of the most life-sustaining, altruistic, wonderful things people can do.
GROSS: I understand what you're saying, but it's a different...
FREEMAN: And I'm...
GROSS: ...question than the one I'm asking.
FREEMAN: I understand. I understand. But - so, again, we're misusing terms here. So when somebody's declared brain dead, it's actually - I know that common usage. But when somebody is declared brain dead, it's not really correct to say that they are on life support anymore, because they're dead. They're not alive. It's not life support. It's physiologic support for the organs, but they're not - it's not life. It's not human life.
And so they are, their organs are supported by the ventilator, by the anesthesiologist administering fluids and giving drugs to be sure the blood pressure and the blood flow is maintained, but it's not life support anymore. It's organ support. And so it's really a misnomer to say, well, you're back on life support. You're not. You're dead. You're on organ support after you've been declared dead. And so that's really - again, it's much clearer than this book and this debate has made it to be, and I hope I'm trying to make it clearer.
GROSS: But I guess I'm wondering if you ever ask yourself: Does the body want to be at rest when - after the person has died?
FREEMAN: Well, I think the person wants to - just as you have when you've signed your donor card - wants to do a good thing for other people. And if there's any part - and none of us will ever know if the body wants to be at rest after it's been dead. Whatever that desire is, if that exists - and we don't know - is, many times, overcome by people's desire to do good for others, and that means being an organ donor, save other people's lives.
So if you just look at the organs, you're talking about seven people, seven other individuals whose lives can be dramatically improved by the organ transplant process. On average, it's three, but it can be as many as seven. And if you add into the fact of tissue donation for people that agree to be tissue donors, then you're talking about hundreds and hundreds of lives. And so every one of us can potentially save seven other people's lives by - through organ donation. And so I think that motivation, that altruistic desire and drive absolutely overrides any kind of hypothetical concern for the body wanting to be at rest.
GROSS: Doctor, do you do the surgical procedure on both ends? Do you both remove the organ from the deceased and transplant the organ to the person who will be given new life from those organs?
FREEMAN: Yes. Yes.
GROSS: That must be just a remarkable feeling to see one organ being taken from the dead and then giving life to a person who might die without it.
FREEMAN: There's a lot more to it than the cutting and sewing, I have to tell you. It is remarkable. Again, I'm biased. I've been doing this all my life, but I'm passionate about it. It is a remarkable thing. It's unique in human existence, I would go so far to say.
GROSS: You're like touching the essence of life, in a lot of ways, you know what I mean? And transplanting it. Do you talk with the families on both sides?
GROSS: And do you have to protect yourself from any end of it? Are there things that you really can't think about, that it's...
FREEMAN: One of the things that should be made completely clear, as well, is when I do the donor operation...
FREEMAN: ...I am not - have had no discussions - and this is true everywhere, in the world, pretty much - I have had no involvement with the decision-making regarding whether that person wanted to be a donor, whatever's led up to all of that person actually becoming the donor, and so on and so forth.
Now in other scenarios, I've talked to families about being organ donors, but then I'm not the one involved doing the surgery on either end in those situations. And again, in the transplant world, there is a very powerful effort to keep the surgical procedure separated from the donation decision-making.
GROSS: And what's the reason for that? So it doesn't seem like you're pressuring somebody because you want the organ to transplant into somebody else?
FREEMAN: So - well, I don't think any transplant surgeon would really do that. But we don't want to have that ever be a concern of anyone's.
GROSS: Because it might look, for instance, like what we in journalism would call a conflict of interest.
FREEMAN: Yes. Yes, that's right. That's right. So - and I've also talked to the families of recipients numerous times. There are - as I tell my local reporters all the time, every time we do a transplant, it is probably one of the most profound human interest stories you could ever imagine, because every one of them has amazing aspects to it. And when you get into the discussion about living donors, as well, it's even more profound. So - and it's emotional, you know? It's emotional when we succeed, and it's emotional when we fail on both sides. And we don't always succeed.
GROSS: So let me ask you: You know, a lot of people who are organ donors, what they've done is they've checked the box on their license and it looks like, you know, done.
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GROSS: But is it done if you've just checked that box on your license? Like, what else should you be thinking about? What else should you be doing? What should you tell your family if you truly want to be an organ donor and you want it to go as smoothly as possible, legally and medically?
FREEMAN: Oh, I think that's a great point. First of all, I hope people are not checking that box lightly and not thinking about it at all. If they are, then, I mean, it is a life-changing decision that you're making. And hopefully, the whole idea of checking the donor box and these donor registries is that you have spent time thinking about it, and more importantly, talked to your family at length about your desires and wishes, and that you have sought out the information that you need to make an informed choice about whether you want to be an organ donor or not.
GROSS: My impression is that, actually, very few of us will get to be organ donors because the criteria for organs that are transplantable is - they're pretty strict criteria.
FREEMAN: That's true. That's true. I think over - if you look at the entire number of deaths in the U.S., only about one or two percent of those deaths are actually potential organ donors. And that's because many people die with bad infections or from cancer or of old age. And all of those things are relative contraindications to organ donation.
GROSS: Dr. Richard Freeman is a transplant surgeon and chair of the Department of Surgery at Dartmouth Medical School.
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