This is a point of inquiry from Monday, January 13th, 2014.
Hello and welcome to Point of Inquiry. I’m your host, Lindsay Beyerstein, and my guest today is ethicist Dr. Art Caplan, head of the Division of Bioethics at New York University’s Langone Medical Center and the author of 32 books in over 600 papers on bioethics. He’s a fellow for the American Association for the Advancement of Science. Today, we’re going to talk about an issue that should be of great concern to skeptical and secular people everywhere. Brain death. The brain is what makes us conscious minds and self regulating organisms. When the whole brain dies, the person is gone. That has been the medical and legal consensus for decades. Yet there is an effort afoot by some sectors of the religious right to rollback brain dead as the standard for death. In recent weeks, two high profile cases have forced us to confront our feelings about brain death. As a society, Jahi McMath, a 13 year old Oakland girl, was declared brain dead after she hemorrhaged following a December nine tonsillectomy. Despite the fact that she was dead. Oakland Children’s Hospital kept her on a ventilator for nearly a month at her parent’s insistence and later at the insistence of operatives from the pro-life Terri Schiavo Life and Hope Foundation, a legal battle ensued and the hospital finally released Jaheim body on a ventilator to an undisclosed location. Marlise Munoz, a Texas paramedic and the mother of a toddler, was 14 weeks pregnant when she was killed by a suspected pulmonary embolism. Her body is currently being maintained on a ventilator, even though her family insists she wouldn’t have wanted to be treated this way, according to the John Peter Smith Hospital’s interpretation of Texas law. If a woman is pregnant, she must be kept on life support until her pregnancy comes to term, regardless of her wishes. I can’t think of a more qualified person to put this controversy in perspective than Art Caplan. Art, welcome to the show.
Sure. Thanks for having me, Lindsay. The science of the brain death has been around since the nineteen seventies. Doctors began to realize that the traditional definition of death when your heart and lungs stopped functioning, couldn’t be applied to people who were being maintained on new machines. The new machines at that time were a ventilator, which assists breathing kidney dialysis, which gets the toxins out of your body when kidneys fail. And actually the heart lung machine made its first appearance so you could keep a heartbeat going in someone just oxygenating the body. The heart, if it wasn’t, the image would continue to beat, on the other hand. They knew that the brain oftentimes was irreversibly and completely destroyed by injury or sometimes by lack of oxygen. And they also knew that people wouldn’t come back to life from that state.
So committees met one at Harvard, one at the University of Minnesota. They agreed on the definition of brain death. Total irreversible loss of all brain function. That means nothing going on in your brain. And it’s not coming back. Meetings within the with the American Bar Association, the American Medical Association. A draft statute was formulated 45 states around 1981 to 1985 passed laws recognizing brain death.
And actually the rest of the states, the other five have had judicial opinions recognizing it. So all states at this point in time recognized brain death as death.
And this is very different than, say, a coma, minimally conscious state, right?
Yeah. In both cases you describe there’s been a lot of confusion, unfortunately, about what the brain death versus what’s at coma versus permanent vegetative state. The Terri Shogo Foundation, when they got involved in the open takes, began to talk as if Jaheim McMath could wake up, which she won’t. They were, I think, deliberately confusing permanent vegetative state brain death. In other situations, the media has misdescribed these states. They’re pretty simple to understand. Coma means brain injury. It’s something that leaves you unconscious. But you have brain activity throughout your brain. Permanent vegetative state means the cortex, the part of your brain, actually, that part of your brain. You would see a picture of the brain. The outer part has been destroyed. But the inner report, the brain stem, the cerebellum still work. That’s the thermostat of the brain in coma and in permanent vegetative state, which is what Terri Schiavo had. What Ariel Sharon was in the brain is still somewhat working. And you’re not dead. Brain death. Permanent, irreversible loss. Both of the cortical functions in the inner brains of the whole brain is gone.
If this is such a widely accepted and controversial concept, why is there suddenly so much opposition to something that’s been so standard for so long?
Yeah, that’s a great question. I think it’s complex. Partly it’s because doctors miscommunicate.
They sometimes come out and say your loved one is brain dead. And what some people hear is poll, well, the brain has died, but the rest of the body is alive. Maybe the brain will come back. I think they should be saying your loved one is dead, sadly. And if the family says, well, how do you know? Then you say, oh, well, we’ve determined brain death, but you don’t lead with a description. Doctors often say. Broad brain dead people, we have to discuss the removal of life support. I think that’s confusing. Life support sounds like you’re still alive. It makes people think that brain death isn’t death. And you don’t have to discuss the removal of life support with a patient in all states when threatened. When death is pronounced by doctors, they can stop treatment. This isn’t something like removing a feeding tube from someone like Terri Schiavo for deciding that someone who’s in a coma for 18 years are going to finally give up their. You do need to have dialog with the family. But when someone’s dead, there’s no reason for discussion. I think doctors create that problem. Add to that the fact that the media mixes up these things constantly. I saw a headline last week in one of the Big East Coast papers that said little girl pronounced brain dead has now died.
So that gives you the impression that brain death is kind of the sort of dead, almost dead and that really dead.
How was it that in the end, these two high-Profile cases, somehow lawyers got involved rather than doctors simply withdrawing care when they realized the patient was dead?
In the case of an Oakland children’s, the little girl went in for a tonsillectomy elective procedure, wound up bleeding profusely and had a heart attack, then had a brain hemorrhage, all of which wound up destroying her brain. But I’m pretty sure the hospital is uncertain about what went wrong, what happened. If you want to put it bluntly, I think they were nervous about liability. So they begin negotiating with this family in a way that I don’t think was appropriate at all. They should have said, tragically, your little girl has died. If you would like to see her before we take away the machines, then you know, you can enter the room and that’s fine.
But they shouldn’t have offered to accommodate them the way they did. The family was angry, justifiably the anger. The family doesn’t want to accept what happened. They certainly didn’t expect it. This was another sick child who just went in to get help with his sleep apnea to get tissue taken out of her airways. So I think that one spiraled out of control because if you will, there’s sort of a malpractise litigation liability thing in the background. The hospital was trying to avoid or minimize their liability, and that’s a guess. But I think that’s what happened in the case of Texas. Things are much worse because they’re the woman has been declared brain dead, according to the family. The hospital isn’t disputing it. But there is a law in Texas that says when you’re pregnant, you can’t stop life support. Now, I think that law is that they had laws. But I also don’t think it applies here because you can’t really have been meant to apply to dead people, even if they are pregnant.
So I think they’re the hospital is misunderstanding what the Texas law says, even though I think it’s a bad law. The hospital is the one who’s refusing to stop.
How old is this law that makes it illegal to withdraw life support from pregnant women?
I think in Texas, law came in about 1996. It’s definitely part of abortion politics. And by the way, there are at least 12 other states that have pregnancy exemptions to living wills and advance directives that require treatment. One of the reasons they said they didn’t like this law is some of the counts, whether you’re one day pregnant or and a half months pregnant. So there’s no distinction made between an embryo and a viable fetus. And the other reason I think the law makes no sense is even if you’re not dead family, the individual is still, in my view, should be able to have the freedom and the liberty and the autonomy decide what do they want to do, especially before the fetus is viable? Well, this lady up in Texas had a pulmonary embolism that Lester and apparently she was only 14 weeks. That’s not viable. Viability wouldn’t really happen in a reasonable way until about 26 weeks. So I think the law with the Texas law basically is unconstitutional, but I hope, in fact, this family chooses to challenge it.
Why don’t they just add a proviso to the standard Texas living well document? I went looked it up on the Internet and they have this whole checklist of things you do and don’t want in certain circumstances. Why don’t they just add a box at the bottom and say and allow people to specify what they would like in case they were pregnant and needed life support?
Just a couple of states do that. Texas did not. Even if you wrote down, if I am pregnant and I am only eight weeks pregnant and I don’t want to be kept alive before fetal viability, the Texas law says until we’re protecting the fetus. So it’s a classic case there of eliminating a woman’s right to control her body and basically substituting the Texas legislature’s view that no matter what, no matter how unsafe it might be for the fetus or how damaged the fetus might be, you’re going to bring. She is determined that woman is going to be used as an incubator to do it.
And it’s not a foregone conclusion that a fetus like MISPRONOUNCES could go on to have a healthy life at this point, is it by no means.
So basically, she was home. And let me head. She’s a paramedic, so she knows a lot about resuscitation. So is her husband. This is very these are very well-informed people. So she had this embolism out of the blue. She fell over in the apartment. Her husband found her about 30 minutes later. That’s a long time for her brain to go without oxygen. It’s probably what killed her, but it’s also a long time at a crucial period of development for the fetus to go without oxygen.
So we don’t know what the impact of that oxygen deprivation might have done to the fetus. It’s uncertain, in my view. It’s up to that her expressing her wishes and her husband and her family, all of which agree that they don’t want to go on.
I think they have the right to do that. They’re in that position to make the best judgment, not the legislature of Texas.
If she’s legally dead, who is responsible for paying for her care with her being legally dead?
No insurance would cover that there. If there’s any group in America who recognizes brain death. Clearly, it’s third party payers. Insurance is not. That has been one Nicole tells the brain death pronouncement. I think basically the interesting thing here is this care that she’s getting in the ICU. It could be ten thousand dollars a day to be there. I don’t know what’s going to happen with that bill. I assume the family’s going to say we’re not doing it. You the hospital decided to keep her going against our wishes. We’re not paying. There’s going to be litigation around that.
And does this all does it complicate things but that she’s approaching the 20 week mark up against the HB two abortion ban?
You know, ethically, I think the longer this goes, when you do get more complications and things get thornier, 20 weeks is still not viable, even 24 weeks, although some people say it isn’t. Texas law draws the line at 20 weeks for viability. The U.S. Supreme Court put it a 24. The various decisions. My own view, looking at the medical facts, is that you’re probably viable in terms of being a fetus at 25 or 26 weeks. People have certainly tried to save 24 weeks, but they get horrible outcomes. About three quarters of them die anyway. The polling, by the way, as their lungs are developed. So that’s that’s the boundary. But that said, when you get up to 28, 29, 30 weeks and the baby over, the fetus is now being close to being a child or a baby that’s gonna be born normally. I think it has more claim to be protected by the legislature to have more standing and more rights. So I do think time as it goes by does make a difference. The closer you get to viability, if this baby was three days from being born as opposed to a fetus, that’s 14 weeks. I think that makes an ethical difference.
What I’m wondering is if they’d acted earlier before. Well, it was still legal to have an abortion. Her husband still has medical power of attorney over her body, right? Yes. Could he simply have ordered an abortion for her?
It’s a great question, but I’m going to say no. They’re going to say we can’t do that at the hospital. We have to treat. We have to rescue this fetus. That’s how we read the law. Again, I’m not sure that’s right. I’m not sure they’re interpreting the law. Right. Regarding the dead person, which apparently the family believes her to be, although the hospital never confirmed it.
But they don’t think the family made it up. And knowing that the husband’s an EMT and a firefighter is pretty well informed about these things. But no, I don’t think you would have gotten anywhere. The odd thing is, from a feminist point of view, at 14 weeks, if she had been conscious, you could have ended the pregnancy at 14 weeks, unconscious, unable to communicate and possibly dead. She lost all her rights.
Do you see a larger political movement to roll back brain death as death in America these days?
I think for all people out, there are not many who would like to roll back brain death or at least make it something that is negotiable that families have to give permission to accept. I think it’s completely wrong.
In fact, I think it’s completely to use a technical, ethical term. Darcy Crazy. Families don’t want to give up on their loved ones. Many of them are going to hoping for miracles or have religious points of view that maybe some kind of divine intervention will bring somebody back to life. When you have a child who is pronounced dead. Families don’t want to hear about that. They want to stay by the bedside to keep the machines going. That’s precisely why the authority over declaring death and stopping here goes to doctors. If we relied on families, we would have.
ICU is full of bodies on machines with families hanging around hoping, praying, wishing that that death hadn’t happened and hoping that something changes. We couldn’t afford it. It’s not the right use of resources. In fact, it is good for the families because they don’t accept the tragic death that has befallen them. So when I hear people say I would rather make bring this something that the family controls as opposed to something that doctors determine and pronounce. It really sends a shiver up my spine because you don’t want to shift the authority there away from independent assessment into emotionally charged family reactions with making Brinda negotiable.
Also complicated for voluntary organ donation.
Well, that’s a fair point, too. So if you made brain death sort of subject to negotiation or bartering with individual families, you’re going to really throw a monkey wrench into the whole process that’s evolved to allow for organ donation.
So organ donation requires that brain death be pronounced. It requires that brain death be pronounced by people not directly involved in the care of the patient. That’s to protect against the fear that somehow we’re rushing people off to use them as organ donors.
You want people who have no conflict of interest, no incentives to declare somebody prematurely dead. So the caregiving team doesn’t determine brain deaths. Independent neurologists come or someone independent from the caregiving team does the tests. Who doesn’t have a steak or a dog in that particular fight? They make the call.
If you remove brain death or make it negotiable, I think you’re going to undermine the public’s confidence in the whole organ procurement process. They’re not going to trust that brain death is real. It’s going to start to erode as a bright line, which is it’s been for many years. So I think you could wind up killing a lot of people because you could reduce the number of people who want to be organ donors. There is nothing wrong with that concept of brain death. But if it’s turned into a political football kicked around and right to life discussions or as part of religious debates, I do worry that we might wind up having for fewer kidneys, livers and hearts available for those who need them. And there aren’t enough of them already anyway.
One of the so-called medical experts that the Terry Shavar Foundation brought forward to speak on the McMath case is both against the idea of Branda, and he’s also written a plan against organ donation persay. Where’s that coming from? Theologically or ethically?
Well, some people will let me say first. You can. Drag out from somewhere. Somebody to oppose anything.
It’s certainly possible to find creationist and we can find people who run around worrying about the safety of vaccines. These are the autism and any number of other issues that have been long since retired as subjects for dispute relative to what the scientific evidence is. I think with this doctor and he’s pretty lonely in his doubts about brain death is saying is for historical reasons or religious reasons. He will only recognize cardiac death. And as long as there’s a heart deep and there’s life, and that’s just where he wants to draw the line. I think that’s very interesting. I think he’s lost that legislative battle. We think the medical community overwhelmingly does not agree. So he’s a dissenter trying to use the old standard. What motivates that? I don’t know.
Do you feel like that might be part of some kind of bid to legislate the existence of a soul?
Could be certainly in that Texas law. There’s some effort to recognize the fetus as a person. So I think there could be at the other end some notion that death really has to do with spiritual or metaphysical states that are beyond our understanding in terms of rejecting some secular idea like brain death. But, you know, medicine see and operate that way. There were people in the early 20th century who kept trying to measure the weight of the soul when it deported the body. I think those experiments are done. There’s not much time for us to be able to do to try and verify a soul based view of death.
So what is likely to happen in the Jaheim McMath case now that her body is out in some undisclosed location?
I think what’s going to happen is Jahi McMath is simply going to right. Deteriorate putrefy on machines. Her heart will eventually stop. You can’t keep going forever that way. I think the parents may say, you know, it’s the hospital’s fault that this happens. And that this shouldn’t have ended this way, because if they’d said or sooner or done more, whether they would have saved her involved in keeping a body in the highest state, going on a respirator in terms of level of care. Well, it’s hard. You’ve got to keep the ventilator going to get oxygen into the body. And at the same time, blood pressure, temperature, those are regulated by the brain. And if you don’t have a brain, those fall apart. So you’ve got to supply warmth in the form of blankets or heat and medicines. They’re called pressors to keep the blood pressure going. You at some point have to get some nutrition into that body, because even if it did, the heart needs energy to keep beating. So it needs a little bit, not a lot, but a little bit of energy. And there are certain other things like excretion that stopped completely. So you’ve got toxins and poisons doing up here to get out of there. That’s why at the end of the day, you’ve been trying hard to keep a body going on machines. It’s a difficult, difficult thing. And where she is out in the community, I don’t know that most facilities could even take it on.
She would need a team of nurses and doctors on 24 hours just to stay safely precise.
I mean, she’s got it. No one has announced that you did. And she’s been out there a week as of our show.
So, you know, I don’t know, maybe she did find some outfit to do that. On the other hand. I would have to say doing all those things to a body seems to me to violate your medical oath, not to disagree, but did it seems to me to violate an understanding that medicine has that when death comes, things stop highlighting, even argue that it would be appropriate to prosecute doctors or a facility, take their license for trying to maintain a dead body, charging people to do that. That seems to me to be both illegal and unethical.
If the media would uncover the names of the doctors and nurses who are involved in it, could just anyone file a complaint with the state medical or nursing board?
It’s interesting, California, where we think she is. Don’t know. But think. I think would permit anybody to file a complaint saying they abused a corpse. Whether anybody would bother to do that. I don’t know. The family certainly isn’t going to do it. That would be the normal place to get those complaints. But they set the whole situation up, so it remains to be seen. I think you could get a complaint. It would probably get investigated. And then the medical license board would have to decide whether they wanted to pursue it. My hunch is the odds of that are remote in terms of really bringing a prosecution. But by my own view, I don’t think it would be inappropriate.
What can people do to. I think a lot of people are nervous about, you know, losing their own rights and their end of life care. What can people do to safeguard their own preferences? Being respected? At the end of life.
Don’t get pregnant. Can stay out of Texas.
I think you should still write out your wishes. If you don’t really want to write out a recipe about what you want and don’t want and take some decision makers. Pick a primary decision maker, Baker, back up, make sure you get their permission to use them as your decision maker.
Talk to them about your values and views. You don’t really need a lawyer to do that. You can write it out on a yellow pad or take it in your computer.
But I think having a lawyer helps once you do those things and you write down who it is that your decision maker. And by the way. If you live with someone and aren’t married, a gay couple or common law, you really need to do this because you’re not legally. You don’t have status to be the decision maker. And if you want someone besides your spouse to make decisions for whatever reason, then you have to write that down because the default will be to your spouse. If you’re formally married, but in any event, writing it out the easy route.
Pick a decision maker, pick someone to back them up, get their permission. Use forms that are available online to do it or see an attorney. It’s not that expensive to do this. And then make sure you give copies of what your desires and wishes are in them to your primary care doctor. If you have one, give them to family members.
Give them to the hospital where you get care. If you are going in there for something, you can ask them to scan it into your medical records or put it in your paper records. The more people who have it, the better off you’ll be.
And is there recourse? I mean, could someone conceivably see your survivors conceivably sue if your directives are not honored by the hospital for whatever reason?
Interesting that there have been a couple of cases where people, the family members of survivors did sue one case in Ohio. They got an award for the hospital not honoring the living will of a person certainly didn’t want to hear.
So there is a possibility of saying you violated a clear cut statement from an individual that they didn’t want this and didn’t want that.
I should also add, you don’t have to fill out a living will. It’s a stock that a living will let says continue. There is no bias one way or the other about what you say. And you could certainly pick a decision maker who wanted aggressive care or an experimental care.
Whether that would be affordable or something you could pay is a separate issue. But I just want to be clear. Living wills, while usually setting limits, they don’t have to.
One thing I’ve been struck by in the online chatter about these brain death cases is the amount of bitterness and paranoia about the organ donation system. What do you think can be done to restore public trust in the institutions that they procure organs and distribute them?
Well, point in the challenge for organ procurement donation is that in an age when people hear a lot about cost containment, the phrase death panels is rattling around. There’s a lot of distrust out there. The health care system. So you have to rebuild that trust. One way to do it is to point out, as I already did, the people who were involved in pronouncing death are independent from the people who are giving you care. We built that wall just to protect against the fear that, oh, if I carry that Boehner record, you’re going to puzzle me after the hereafter. So the thing my parts for some rich person or celebrity, that doesn’t happen. That isn’t true. Celebrities do get transplants. But it’s partly because celebrities are in line with it. Also, occasionally a Mickey Mantle or a Lou Reed or an Evel Knievel will get it or Steve Jobs will get a transplant. But the real thing to keep in mind is there is a firewall. Those who pronounced. Yes, different from those who are involved in your care. Those who come to get your organs are not part of the cure team. They don’t show up until after death has been determined. So we’ve tried to be careful and cautious. I’m someone who tracks the transplant community very closely. I know all their troubles. But I think the notion that they crossed the line and try to hustle people off to death prematurely because they want ports is simply not true.
Do you know of any public school curricula that teach in civics class or health or anything like that? What the legal definition of brain death is and about organ donation.
Yeah, great. Great idea. Great point. I don’t. There are some high schools now, both public ones and private ones that have introduced bioethics courses. They must be discussing in some of those courses end of life care issues. So I can’t name one off the top of my head that I know covers brain death. But there is growing interest in the high schools in covering a lot of the bioethics or medical ethics topics. We actually have a high school bioethics site at NYU that I’ve been sort of nurturing along lo these many years, a little underfunded. But he tries to help teachers and students look at some of these questions. And we certainly have a unit up there on end-of-life care that includes brain death.
So do you have a you are Al, that you could share with our audience?
I wish I could, but I don’t remember it. But if you just Google NYU High School bioethics, you’ll go right there.
What do you think can be done to increase rates of organ donation? I know that I would read the other day that New York has an absolutely dismal rate despite, I would think, a relatively liberal population that might be receptive to sharing organs after death.
New York goes trail most of the country in terms of people being willing to sign on. Organ donors, some of the other places in the country, they’re a little surprising. Wisconsin historically has had trouble with its nearby state. Minnesota does much better. Pennsylvania is better than New York. And there’s similar kinds of states. So whatever is going on, it isn’t 100 percent clear what the hesitancy is in some of the lower performing states.
I was to that Alaska had an organ donor rate, some in the 70s, I think.
So some states do very, very well. But it’s not you know, we have these stereotypes that in the Midwest, people will love their neighbor more and sign up for organ donation.
It’s not true. Canada is very poor rates worse than the United States. Don’t know what that’s all about.
And other parts of the United States, like Pennsylvania, you see high rates with. More people than, say, in Europe signing up for willingness to be organ donors. So I think there are two ideas out there. I favor one of them to try and get more organs. One is to start to offer money, to start to see when you die. We would pay you if you would be willing to give your organs for transplant. I don’t like that idea because people are nervous enough as it is that they’re going to get less than aggressive care if they’re organ donor, potential organ donors. Then if you put money out there, you’re going to really strike fear into their hearts because you’ll be thinking my relatives are all going to get, you know, 50 grand if I’m dead, boy. Maybe they’re not going to argue very hard to keep me going. The other idea that I’ve long been a proponent of is called presumed consent for default to donation. Right now, every state operates in getting organ donors by asking them to sign the cord and opt into the system. I think we can respect people’s right not to be donors if they don’t want to by having them opt out. So I would rather see us presume that everybody is a donor. And after all, Paul’s so that that’s what the majority supports. And then if you don’t want to do it, register on a computer or charity card or tell your loved ones that you don’t want to do it. Put the onus on people who don’t want to do it to have to raise the objection rather than the current system, which puts the onus on people who do want to do it. And I think you represent some success with that. I think we would, too.
Wouldn’t that also stoke fears among marginalized people in terms of the idea of the states going to take their organs if they don’t have all their paperwork in order?
Well, it could. I mean, there’s certainly people who worry that somehow or another they’re going to turn me into an organ donor against my will. But if your family knows you don’t want to do it, they can speak up if you carry that card or write something on your driver’s license. It will be found. Many states have done a computerized registry, as you just put your name on a list and you’ll get found. I find it hard to believe with all those safeguards that someone would inadvertently turn into an organ donor.
But it seems like there’s so much misinformation even now. You know what the Jaheim McMath case? Have all these beliefs about organ donation. And if you would add mandatory opt in or mandatory opt out or whatever the technical term is, people people would just go nuts.
Well, there certainly could be some resistance. I don’t mind getting into that debate. I think that would give us an opportunity to educate the public about why they don’t have to be so fearful about why the need is there to do it, about what brain death is all about.
Right now, we’re getting the public educated about brain death when the Terri Schiavo Foundation cases in Texas that involve laws that are ridiculous.
So maybe moving it toward a. Public policy discussion of what about organ donation? Where are we, how do we get more organs and tissues? What if your family member needed not only a hard or a long, but possibly a face, bone or skin that might actually give us a better foundation?
They have this whole discussion.
Well, that’s a really interesting idea. Maybe we should be more more forceful in pushing forward a positive agenda on organ donation and end of life care. Thanks so much for being on the program today.
Hey, I really appreciate it. Well.