Interview: All in the Mind Brain Death, with Alan Shewmon
Guests on this program:
Professor of Neurology and Pediatrics, University of California (Los Angeles) School of Medicine
Intensive care specialist, Royal North Shore Hospital, Sydney
Bioethicist, Trinity College, Hartford CA
All in the Mind: 2 February 2003 - Summer Series 6: Brain Death
Natasha Mitchell: Hi, this is All In The Mind, and Natasha Mitchell with you for the final in our Summer Series of popular highlights. Next week I’ll be back with all new shows for 2003.
Today we’re looking at brain death.
You may not know this, but the medical diagnosis of brain
death has a relatively short history. It came into being just thirty-five years
ago now, when a committee of experts was asked to come up with a new definition
of death based on brain criteria. Ever since then, and increasingly over the
past decade, the critics of brain death have been growing. It’s true they’re
still in the minority, but they are asking some very interesting questions. For
example: if the brain dead aren’t really dead, then what does that mean for
transplant surgery – which is very much dependent on dead donors? Today, Radio
National’s Wendy Carlisle goes in search of some answers.
ARCHIVE: Presenter: Our guest of honour, Professor Christian Barnard.
Christian Barnard: People often ask me what was really the dramatic event in the heart transplant. Of course, the stage when we had to move the heart of the patient and inside his chest, inside the sac, where you usually find the heart, there was just an empty sac with no heart there, and it was really fantastic when we applied a shock to the transplanted heart and the heart started to beat.
Wendy Carlisle: Dr. Christian Barnard, who performed the first heart transplant in South Africa in 1968. It was in that year that a group based at the Harvard Medical School in the US was asked to come up with a new criterion for assessing whether or not someone was dead. The reason for this was driven by new technology. Respirators developed during the polio epidemics of the 1950s were now keeping patients alive who were in otherwise hopelessly vegetative states. And a new field of medicine, transplant surgery, needed a supply of organs from dead donors with beating hearts. And so the Harvard Medical Committee came up with a diagnostic criterion for death called “brain death” – the term used when brain function is deemed to have ceased totally and irreversibly. Dr. Ray Raper is an intensive care specialist, and he’s written about brain death for the National Health & Medical Research Council.
Ray Raper: The original discussion of this in the medical literature is about a concept of coma depassé, some French literature which is trying to recognize the state beyond coma when treatment could be withdrawn. But in fact the Harvard criteria listed two reasons for trying to sort out brain function criteria for certification of death. The first criterion was the burden of futile treatment. The second listed criterion was facilitation of organ donation. Now, you might say that’s a contrivance, but it nevertheless was the way it was published, those two indications and in that order.
Wendy Carlisle: But clearly the two are linked, though.
Ray Raper: Oh, they’re linked, they’re linked. There’s no doubt they’re linked, historically and practically. But they are not inexorably linked.
Wendy Carlisle: But according to Jim Hughes, who’s a bio-ethicist at Trinity College in the United States, the idea of brain death has distinctly cultural, utilitarian origins.
Jim Hughes: Well, organ donation right now is predicated on “cavaderic” donation – both the donation of organs from actual cadavers, those who have always been considered dead, and those who have suffered severe brain traumas, whose organs we are able to maintain in a heart-beating body, breathing body, until we are ready to turn off that switch, take out those organs and put them in somebody else. That was the whole rationale, really, for this transition to this new definition of death, a definition of death which I think always made sense. There have always been people who were permanently unconscious, who were as good as dead, and so I wouldn’t argue that it was simply a crass or an illogical thing for us to do. But there wasn’t a real motivation to do it until we had the organ transplantation from these bodies that we couldn’t kill, because under the law and under our general moral revulsion to the idea, we didn’t want to kill somebody to take their organs out. So what we did instead is that we declared them dead.
Wendy Carlisle: So you’re saying that from your point of view, which is a sociological-cultural-anthropological point of view, brain death as it was imagined by the Harvard Committee in 1968, that’s not a medical fact, that’s kind of a social compromise.
Jim Hughes: Well, Engels put it actually, one hundred and fifty years ago, he said that death was a process. And that’s been an observation for many. But if you look at extreme cases, you can see that there are transitional states, grey states, between being alive and being dead. And the decision to declare a certain line is not completely arbitrary, but it is culturally specific, and it has certain motivations behind it. In this case, the motivations were very clear. The motivations were to save lives and to serve the needs of the living, the clearly living, taking the organs.
Wendy Carlisle: In the last decade, especially, there’s been a small but growing collection of voices questioning whether the brain dead are really dead at all. One of those dissenters is Alan Shewmon, Professor of Neurology and Pediatrics at UCLA Medical School in the United States.
Alan Shewmon: Well, the term itself is kind of ambiguous from the start, because in one sense it could simply mean death of the brain as an organ, just like you can have necrosis or death of a finger, if you cut off the blood supply to it. So the brain itself can die due to lack of blood supply. So one sense of the term ‘brain death’ simply means that: total necrosis of the brain, if you want a medical equivalent of it. The term is also used more colloquially to mean death of the patient diagnosed in a neurological manner, and death due to some neurological cause that results in brain destruction.
Wendy Carlisle: So is brain death the death of the person, in your opinion?
Alan Shewmon: I used to think that it was. But in fact, during the 1980s and early 90s I read a number of articles and gave lectures supporting that idea, and since then I have had to change my opinion about it due to an accumulation of evidence to the contrary.
Wendy Carlisle: What kind of evidence are you talking about here?
Alan Shewmon: Well, the theory is that the brain is the central integrating organ of the body, and without brain function the body literally disintegrates into a collection of organs and tissues, and is not a unified organism any more. And that is the main line theory for why brain death is supposed to be death. But I came across increasing reason to believe that patients in this state did have signs of, let’s say, “living function” at the level of the organism as a whole, and not just life in individual organ systems. It is clear that hearts can beat independently without brain function, and many other organs continue on their own, even without life in the remainder of the body. But what we’re talking about here is not just the functioning of individual organs or tissues, but a more unified holistic functioning. Many patients in the state of brain death, if they get through the initial period of acute dysfunction that requires quite intensive care, they often will stabilize. So these are deeply comatose patients, so I would say that these patients are deeply comatose, permanently comatose but they’re still living human beings.
Wendy Carlisle: I think you’ve actually called somewhere the notion of brain death a medical fiction.
Alan Shewmon: A legal fiction.
Wendy Carlisle: A legal fiction. What does that mean, then, in your opinion for the whole donor debate?
Alan Shewmon: I guess it’s also a medical fiction. You’re right.
Wendy Carlisle: Death, let alone brain death, is a difficult concept to grasp and not everybody agrees with the views of Professor Alan Shewmon. Dr. Ray Raper again.
Ray Raper: If you go back to the original Harvard criteria, that was a group of people not just from the Harvard Medical School, but also from the Divinity School, I think, and from Ethics and from Law. It was a bunch of people who got together to try to nut out a problem, or to think about a problem, and I think to say what they came up with is a contrivance merely to serve the interests of organ donation is unfair. I can understand people having problems with accepting that those who’ve lost all brain function are in fact, dead. But I think it really does come back to how we see ourselves. And I think for a lot of people, when all brain function has irreversibly ceased, they do see that as the death of the person. The idea that death has to be something that we can recognize, that because there’s such a contrast between life and death, those two states are clearly different, we think we ought to be able to recognize very easily the point of transition between life and death. But that’s not historically the case, and we’ve used different ways of thinking about death and dying. Some of my favourites are John Donne:
As virtuous men pass mildly away,
And whisper to their souls to go,
Whilst some of their sad friends do say
“The breath goes now”, and some say “no”.
That’s an elegant way of talking about this ambiguity of the transition between life and death. So for practical reasons we, as a society, have had to define life and death, and we do it in all sorts of different ways. I believe in New Zealand law you’re dead when a doctor certifies you’re dead. And that’s the criterion. In New South Wales law, you’re certified dead when all brain function is irreversibly ceased, and that’s the notion that we’ve been talking about – or when their circulation has irreversibly ceased. But that doesn’t mean that that’s the end of a process. It’s a point in a process. Some tissues remain viable for many hours after the heart has ceased. Corneas can be retrieved for transplantation as viable tissues, and so can skin, for even up to twenty-four hours after death in a conventional sense. And skin and hair continue to grow after death in a conventional sense for many hours. So that there is some function in the body, even when we define death in the conventional sense of no breathing and no circulation. So I don’t think we should get too caught up in the fact that this brain death notion, or certifying death based on a brain function criterion, is a contrivance. Of course, it is in the sense that we have to arbitrarily define this in some way, because if we waited until every cell in the body had died, until every single function in the body had died, it would be very difficult for us to certify that anyone was dead that hadn’t actually structurally decomposed.
Wendy Carlisle: There are some people out there who think that in the not-too-distant future, the line between life and death will become more blurry than it is now. One of those people is Jim Hughes – who, I should also mention, is Secretary of the Trans-Human Society in the United States. Well, Jim believes that medical science will keep pushing the limits.
Jim Hughes: Well, the second thing that’s going to happen, and is already happening, is that brains which have had a cascade of destruction throughout them – such that in the past they would have gone completely necrotic, and the entire brain would have been unusable after a certain point – we are now increasingly able to take those brains, stop the cascade of death in the brain, and potentially now bring back neurological activity, bring back neural cell growth, re-introduce stem cells which will apparently magically find their way to the parts of the brain that are damaged, and attach themselves, and begin to function in the way they’re supposed to function and begin to pick up a role in the brain. We are also beginning to be able to introduce silicon computer interfaces with the brain, that could in say five, ten years allow the brain to interface with an advanced computer, and the computer could begin to take on various aspects of neurological function – and, of course, do many other things as well. So those technologies – the organic technologies, the pharmaceutical technologies, the cybernetic technologies of neural remediation – will mean that if you got brought in and you had a severe head injury, you’re no longer going to be considered automatically dead. There’s going to be a period in which you have to be subjected to a series of tests, and potentially a rather protracted series of tests, to see whether there’s enough of you left in your brain after we try to bring it back. Just as we do now with concussions; when a brain comes in with concussion, and they’re unconscious, we wait a couple of weeks to see whether they wake up, and see what’s left of their memories, to see how neurologically damaged they are. It’s going to become even more complicated in the future, because in addition to, during that waiting period, we’re going to be introducing all these technologies to see if we can bring anything back, and so even someone that we would consider brain dead today, may in the future simply be nominally dead until we can really figure out if they’re dead or not.
Death is going to be increasingly like someone who’s missing in war and you just have to wait until the war’s over and see if they wander out of the battlefield or wander out of the concentration camp someplace. It’s going to be a matter of… there’ll still be grieving, there’ll still be great uncertainty and unhappiness, but eventually something may wander back out. Now, the question is: What is it when it wanders back out, if the person has lost all of their memory? If they still have some of their habits, some of their preferences, if they still remember their name but they’ve lost their entire childhood, they don’t remember you any more, are they still the same person? Those kinds of questions about what is a person will become increasingly central.
Wendy Carlisle: Well, that might sound like science fiction from Jim Hughes, but then science fiction has an uncanny knack of predicting the future. So what does Dr. Ray Raper think? Could the new medical technologies of the future bring the brain dead back to life?
Ray Raper: No.
Wendy Carlisle: That’s just science fiction?
Ray Raper: That’s just science fiction. Or miracles, I suppose. But no, that’s not possible, because it’s never going to be possible to regenerate… it may be possible to regenerate nervous tissue at some stage in the future. It’s never going to be possible to regenerate the entire brain of a person. When I say that, I mean not in anything like a foreseeable, reasonable, scientific future. Because the way that this occurs, is that there’s a massive injury to the brain, which results in massive swelling of the brain, which results in an increasing pressure inside the skull, which reduces the blood flow to the brain. And the context in which all brain function is documented to have irreversibly ceased, is when the brain cells collectively have been deprived of oxygen. So many, all, of the brain cells themselves are dead. And that’s the basis on which all brain function ceases.
Wendy Carlisle: What about the miracle of what we hear could be in the future for stem cell research?
Ray Raper: Then you would be presumably trying to grow a new brain, and that’s certainly in the realm of science fiction, and I can’t imagine it ever happening. But if you developed a new brain from a stem cell, are you then proposing that we would graft this onto the old body in some fashion? That’s certainly not possible at the moment, but is really in the realm of science fiction, not of reality.
Wendy Carlisle: In Australia there are two and a half thousand people on the transplant waiting list, but there are less than two hundred donors a year, and that number is falling. The pressure to increase organ retrieval is increasing, and people like Dr. Alan Shewmon believe the consequences of challenging the brain death notion are quite profound.
Alan Shewmon: Well, I think it means that we have to re-think the basis for donation. My interest is as a neurologist, and about the validity of this concept of brain death and the consequences of that, need to be studied carefully by people who are involved in transplants. An ethicist, that’s outside my own field so to speak, but I don’t think it necessarily causes a death blow to organ donation, especially if there is more research into methods of preserving organ viability after cessation of circulation. I think this is most important for heart transplant. Already they have pretty good methods of preserving organs in the case of kidney donors, even after cessation of circulation. So these transplants, I mean the non-heart transplants, don’t depend as much on the notion of brain death being death as heart transplants do. But even with heart, with some creative re-looking at the situation, there may be ways around that.
Wendy Carlisle: Where do you think it’s going to end? Do you think there is a movement towards doing away with the idea of brain death?
Alan Shewmon: Well, there’s certainly a movement about it. I’m not the only one, and the number of critics of brain death seems to be growing significantly, especially over the last decade. And it’s interesting that criticisms of the concept come from quite different directions, and there are more and more who have come along and pointed out inconsistencies between the standard theory and the claims of whole brain death versus the diagnostic criteria. So that what is actually diagnosed in practice doesn’t necessarily correspond to what it’s supposed to be in theory, or is in the statutory law. In this country, for example, and most other countries that have a “whole brain death” standard, although the law defines it as irreversible non-function of the entire brain, the diagnostic criteria don’t look at all the functions of the entire brain, but look only at brain stem functions – and they allow for some functions of the brain, such as hypothalamic function, which regulates the pituitary gland and some electrolyte balance.
Wendy Carlisle: Professor Alan Shewmon, with some of the inconsistencies in the diagnosis of brain death in the United States. What about here in Australia? Do we test all brain functions when ascertaining brain death?
Ray Raper: No, the definition of death doesn’t require us to test all brain functions. The definition of death requires that we certify that all brain function is irreversibly ceased. How that was to be certified was not prescribed in law, and neither was it prescribed by the Law Reform Commission when they drafted this definition of death originally. That was left up to professional consensus.
Wendy Carlisle: That’s not a massive loophole is it?
Ray Raper: I don’t think so. I don’t think it’s a massive loophole. You do run into problems of: What do you mean by “function”, and how does that interact with activity? And I certainly think that the way we practise in Australia is defendable in terms, or is consistent with the definitions, and it has certainly stood the test of time over many, many years now. So from a legal point of view, when we certify somebody dead based on the brain function criterion, they aren’t as good as dead, they are dead.
Wendy Carlisle: Do you believe that somebody has to be dead to be an organ donor?
Ray Raper: Let me say that a lot of organ donors aren’t dead, those are the living donors. You can donate blood, bone marrow, even kidneys and even part of your liver as a living donor.
Wendy Carlisle: But heart donors do, don’t they?
Ray Raper: Heart donors have to be dead, yes. And do I believe that’s necessary? There are a lot of difficulties if we move away from that concept, but no, I don’t it’s absolutely essential that we define it in those ways. We could define things differently. We could write things up differently. We could say “that one can be an organ donor if you fulfill certain criteria, and one can be buried if you fulfill certain criteria”, and those two criteria don’t necessarily have to be the same thing. And there would be some utility in that. There would be some major philosophical problems associated with it that would need to be worked through, but it wouldn’t be an impossible proposition.
Wendy Carlisle: So what do you think the impediments are to uncoupling brain death and organ donation? Is it too radical?
Ray Raper: It’s certainly radical. The problem is that you then run this risk of people being concerned about their own futures, I think. There is a certainty about the process now, that in requiring that all organ donors be dead, there’s a certainty about that that’s reassuring for some potential donors. That is, for you and me walking around in the streets, I guess.
Wendy Carlisle: What, that doctors won’t kill them to get their organs?
Ray Raper: Something like that, or something of that nature. Not everyone would agree with that, and there is a philosophical issue in there, about using people for the benefit of others prior to their death, and so on.
Natasha Mitchell: Dr. Ray Raper, Intensive Care Specialist at Sydney’s Royal North Shore Hospital, speaking with Wendy Carlisle who produced today’s feature. That’s all for this week – thanks today to David Rutledge to Jenny Parsonage for studio production. Starting next week: a whole new feast of programming for 2003.
Guests on this program:
Professor of Neurology and Pediatrics, University of California (Los Angeles) School of Medicine
Intensive care specialist, Royal North Shore Hospital, Sydney
Bioethicist, Trinity College, Hartford CA
© 2007 Australian Broadcasting Corporation
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