Father Paul Quay suspects that some live people are being declared dead these days, and he doesn't like it. For a decade and a half the Loyola University philosophy professor--along with such colleagues as Ohio neonatologist Paul Byrne and Chicago neurosurgeon Richard Nilges of Swedish Covenant Hospital--has been trying to debunk the widely accepted notion of "brain death."
They doubt that brain death is the same thing as death. Even if it is, they doubt that physicians have good criteria for determining when someone is brain dead. And even if doctors do have good criteria, they fear the criteria are often not well applied. Byrne says brain death is "one of the biggest and broadest lies that exists in our society." His fervor is not diminished by the fact that people diagnosed as "brain dead" are dying by anyone's standard; even if they're kept on life support they'll be unquestionably dead within a week.
Quay, Byrne, Nilges, and a few others have documented their charges and published them in reputable periodicals, including the Journal of the American Medical Association, the Gonzaga Law Review, and Issues in Law and Medicine. But the general public doesn't read these magazines, and the mainstream media rarely touch the issue.
Those who earn a living pondering these macabre matters--medical ethicists, among others--rarely address Quay and his colleagues' criticisms. One reason is that the subject is inconvenient. If the idea of "brain death" were rejected the source of most vital-organ transplants would dry up. If transplant teams had to wait for organ donors to be dead by the traditional definition, most of their organs would not be usable.
These days mainstream medical ethicists are debating proposals to broaden the definition of brain death even further, so that more people can be declared dead sooner, making more organs available. Ethicists Robert Arnold and Stuart Younger put it frankly in the June issue of the Kennedy Institute of Ethics Journal, which was entirely devoted to examining one such proposal: "The irresistible utilitarian appeal of organ transplantation has us hellbent on increasing the donor pool. . . . Our society is on the brink of a paradigm shift in which the production of body parts will increasingly link the intentional ending of some lives with the salvaging of others."
Quay, a 69-year-old Jesuit, tends to be old-fashioned when it comes to defining death. He makes an elaborate and careful appeal to common sense. "Consider the following case," he writes in the Pope John Center publication Ethics & Medics (June). A woman in a deep coma on life support has been declared brain-dead by several neurologists, who say her brain has "irreversibly ceased to function." Does that mean she's dead? No, says Quay, and asks us to imagine making two medical examinations, a day or two apart.
First, he says, examine her along with the neurologists: "You would find someone profoundly unresponsive to any stimulus of pain or pleasure and quite unable to breathe (i.e., move rib-cage or diaphragm) without the ventilator. But this patient's heart is beating. Her respiration (i.e., exchange of oxygen for gaseous wastes in the lungs and body tissues) continues. Her color is normal brown or pink. Her temperature holds its own against room-temperature, and she sweats if the room is too warm. Her kidneys continue to put out urine. Her leg will kick if the knee is tapped. More strikingly, if she is pregnant, the child continues to grow healthily within the womb. Her body, to be brief, continues to function as one single organism." (Which is why its undamaged vital organs are still worth "harvesting," for transplant.) This Quay calls Condition I.
Then, he says, examine her again a few hours or days later: "Even though the ventilator and the rest of the life-support system continue their activity, the heart stops; the vascular system collapses; respiration halts; the color turns bluish or gray; body-temperature approaches room-temperature; kidneys and other organs cease to function; all reflex movements disappear; the child in the womb will die if not delivered at once by Caesarian section. In a short time, rigor mortis sets in." This is Condition II.
Until the past quarter century people have called a person in Condition II "dead" and a person in Condition I "alive but dying of some mortal injury to the brain." Now, however, Condition I and Condition II are officially and legally called the same thing: "dead." How, Quay asks, can we justify slapping the same label on two such different conditions? What has happened to turn dying people into dead ones?
Quay is not focusing on the agonizing but separate question of when to cease treatment in hopeless cases: "Under most circumstances it would be morally quite proper to turn off the ventilator of a nonpregnant patient in Condition I, thus letting her pass quickly into Condition II." His concern cuts deeper. He and his colleagues follow up their rhetorical questions by pointing out inconsistencies in the fusing of the two conditions:
Brain death is often sold as being more scientific or precise than the traditional definition--yet there are more than 30 different sets of criteria for brain death, different enough that a patient who might be declared dead in Minnesota might not be in Illinois.
The 1982 Uniform Determination of Death Act--a model statute many states now follow--says that brain death is the "irreversible cessation of all functions of the entire brain, including the brain stem," which regulates bodily functions like blood pressure and thyroid activity. But some sets of brain-death criteria disregard the brain stem. Quay points out that the 1987 "Guidelines for the Determination of Brain Death in Children" require the patient to have normal body temperature and blood pressure. In other words, writes Quay, in most cases "the brainstem must be alive and functioning for him to be declared dead."
Byrne points out an alarming article in the September 15 Annals of Internal Medicine, in which Dr. Amir Halevy and Baruch Brody of the Baylor College of Medicine summarize several studies of adults that show that "many patients meeting all of the standard clinical tests for brain death still have some cortical, midbrain, or stem functioning." This doesnt mean these people could recover (unlike those in a "persistent vegetative state"). But it does mean that they may not be brain dead when their organs are removed.
Quay and colleagues insist doctors cannot tell whether a "cessation of brain functions" is "irreversible" unless they know the whole brain has been destroyed. Yet rarely are adequate tests prescribed to confirm that destruction.
Not surprisingly, the business of brain death confuses many medical professionals. Robert Veatch, director of Georgetown University's Kennedy Institute of Ethics, writes that "physicians are sometimes heard to say that the patient 'suffered brain death' one day and 'died' the following day." And in a 1980 article in the American journal of Nursing brain-dead patients were said to "require aggressive nursing to prevent them from catching pneumonia or from developing bedsores." Quay and colleagues deadpan that these are "hazards to which corpses have not hitherto been subject."
Byrne, a physician who specializes in the care of newborns, says that he started questioning the idea of brain death many years ago: "We had a baby who was on the ventilator, not breathing on his own. He had a flat EEG [electroencephalogram], which is consistent with brain death, twice two days apart. But eventually he got off the ventilator, grew up, got straight As in school. I don't say he fulfilled anyone's criteria for brain death, but it got me wondering."
The ultimate question may be not medical ("What are the right criteria?") or philosophical ("What exactly is death?"), but ethical: Is it OK to deny one person a few hours or days of what is at best low-quality life, if taking that person's vital organs may give years of life to others. Quay and his colleagues don't think so. They resist this kind of ethical utilitarianism on principle, arguing that once you start thinking in that "practical" way it's one slick toboggan slide to a society where the strong can legally do whatever they like to the weak.
In person Quay is precise and modest, with a dry, deep voice. He gives a lot of credit to nonprofessionals in the prolife movement who, he says, spotted something fishy about brain death long before he did and encouraged him and others to study it. "I started in 1976"--five years before he came to Loyola--"and for at least three years I had no real argument against brain death except that it just smelled bad as law." Occasionally he displays a dry sense of humor. "If you can't do anything about this at the moment," he says, "laughter is the only way out without going mad."
Harold Henderson: You see this field as pretty confused. Where does that come from?
Paul Quay: One important point is that doctors generally lack a liberal-arts education and as a result do not seem to have the power to make distinctions which even very ordinary folk can make and which certainly philosophers can make. Not that in this particular area philosophers have been all that brilliant. Part of it I think is a kind of pragmatism in medicine. You give them a pill, and if it knocks the disease out, fine, And if it doesnt, you give them a different pill. And if the side effects are too bad, you back off. And so on. It's a very concrete mind-set, not an abstract one. So people should not assume too easily that doctors are in bad faith when they support something like brain death. And while I think there are some who are in bad faith in the matter, I think they are relatively few.
Another thing I might clarify right off--Byrne and I and the others that have worked with us are not saying that we have proof that a person who's brain-dead is not dead. Were saying we have sufficient evidence to make it a very questionable thing. In point of fact, we've become increasingly convinced over the years that brain death is not the death of a person. The arguments on the other side have never been very strong and are not getting stronger. People are unwilling to argue a lot of the points that we've raised.
And disturbing evidence keeps coming to light. At one very good research hospital out in California they were going to do some experiments on brain-dead people [Neurology, July 19781. They had ten people that they'd picked out of that hospital and other hospitals nearby who had been officially declared brain-dead but kept on life support. To do their experiments they took this group of ten and weaned them from the ventilators. And it turned out that three of the ten started breathing on their own--which, of course, nobody who believes in brain death will allow. They're not brain-dead if they can breathe on their own.
So, in three cases out of ten, people who'd been declared brain-dead in a good research hospital, where there was no prima facie reason why the researchers should have been careless or sloppy, turned out not to be brain-dead. They went ahead and carried out their tests on the other seven.
As you read through the literature you come across more and more things of this kind. Here at Loyola a circle of physicians published a paper in Archives of Neurology [September 1987] pointing out--what Walker and others have said for years--that there is cortical [higher-brain] activity going on in otherwise brain-dead patients. It's detectable. And it's not just single-cell-type things, but activity of the cortex, albeit of a very low level and presumably low-grade. They concluded that it should no longer be a criterion for brain death that you have an absence of this. Their whole point was to redefine brain death so as to allow this brain activity.
Now this kind of thing gets me very suspicious. I don't believe that it's necessarily malicious. But at the very best it's totally confused. They've got the cart before the horse in every case. If the general public knew more about a lot of these things, there would be a lot of revision.
HH: The popular conception is that improved technology, improved life support, has made it necessary to have a new, more "scientific" definition of death.
PQ: Well, first of all, from the point of view of a philosopher or a moralist, new technology changes nothing morally; it just gives us tools to do things. What's the morality of a hammer? Hammers don't have morality. If I use it to drive nails, doing a good deed of some sort--putting up a house for a poor person--that's a good use of a hammer. If I use it to bash somebody's brains out, that's a bad use of a hammer. With regard to new medical technology, we can use it for good purposes or bad purposes, sometimes for ostensibly neutral purposes.
What's really going on is that with new tools there are things I can do that I never thought of doing before and which I might want to do. And therefore it's those newly conceivable desires that suddenly call for a new morality or new ethical consideration.
HH: I think the assumption is that if we don't have brain death our hospitals will be overrun with people being kept "alive" indefinitely on life support.
PQ: No. Definitely not. Under any of the 30-some sets of criteria, if the diagnosis is carried out properly, that person will be dead [Condition II] ordinarily within 24 to 72 hours, life support or no. And within the week for sure. The idea of prolonged survival of brain-dead people is simply for the birds. Actually, PVS [persistent vegetative state] and a number of other conditions which are not brain death are much more consuming of time and equipment.
HH: But no one is claiming that these people in a persistent vegetative state are dead.
PQ: Oh, yes, they are. That was one of the things we already said back in 1983: that if you're really serious about this brain-death approach you've inverted what medicine is really about, and the result will be that you will eventually change your definition from "brain death" to "cortical death." "Irreversible loss of consciousness" is how Robert Veatch put it in the Hastings Center Report, July-August of this year.
He has been arguing for this from way back. But now it's coming on very strong. Unfortunately we have a couple of Catholic moralists who are supporting that move, Kevin O'Rourke in Saint Louis, and Richard McCormick at Notre Dame. O'Rourke is arguing that if you cannot be achieving the goals of human life by actively relating to other people and so on at the present time then you're as good as dead--are dead.
McCormick had a book out about five years ago, called The Critical Calling, with an essay on cessation of treatment. At one point he suggests that saying a person is terminally ill is not to make a statement of medicine or medical art at all. It's simply the statement of a value judgment--that if I decide their life is valuable enough to keep treating them, then they're not terminally ill. If I do decide to make the value judgment that there's no point continuing then they are terminally ill, in that terminology.
I brought that essay into a class I was teaching in prolife issues and asked the students about it. One guy raised his hand and said, "Well, that's great. Next time I'm driving down Sheridan Road late for a class and I see some old arthritic crossing the street in the middle of my lane, then I don't have to slow down."
I said, "Why don't you have to slow down?"
"Because if I hit him, it's not me that killed him, it's his arthritis that did him in."
HH: In other words, the student made the value judgment that the arthritis was terminal.
PQ: That's right, and what the old person died from was the disease which made it impossible for him to get to the other side of Sheridan Road in time. The only human reaction to that is either enormous indignation or laughter. But this stuff is taken so seriously!
HH: Surely you don't have to take that point of view to favor redefining death as brain death.
PQ: No. Termination of treatment can be another factor. There are people who would like Grandpa to leave this world in a hurry, and not always for bad reasons. They want to end his suffering--not being able to communicate, simply having to lie there day after day after day. But that argument gets shot down right away. If he's brain-dead and if in fact brain death is the death of a person, then there's no way he can be suffering, at least in this world. If he is capable of suffering, then you can't call him brain-dead.
HH: Nevertheless, that's the motivation.
PQ: The motivation of people is not always totally consistent. I mean, the internal logic of their motivation is not consistent. But the experts should have clarified this. They should have said, "Look, if your grandfather is suffering, he's not braindead. We have to deal with it as a different kind of situation. If he is brain-dead"--let us say he seems to be--"then he's not suffering." You have to take your choice. You can't have both.
HH: I think the emotional logic is that it's easier to deal with discontinuing life support if you think he's already dead.
PQ: And I think if physicians are in bad faith, that's where the bad faith comes in. They don't want to accept the responsibility of saying, "Stop the life support. No, he's not dead. Yes, he will be dead shortly, in a matter of seconds or minutes, but there's no point in continuing."
Now as far as Byrne and I are concerned--and I think almost anybody in the Catholic tradition of morals--there are perfectly well-defined cases where it's perfectly proper to turn off all life support, except possibly comfort support. There's no obligation whatsoever. The problem there is law. Lawsuits. And the law has been a mess on this. It's not just the doctors' fault.
HH: Let me put the practical question. As you see it, the gap between these two definitions--traditional death and brain death has existed for 20 or 25 years. The people who fall into this gap are not people who are going to get better. At the very best they are dying but not dead. On the other hand, we now have a whole industry devoted to transplanting organs and desperate people lined up all around the country waiting for them. Isn't there an extraordinarily strong temptation to regard the difference between death and brain death as a small matter, a technicality?
PQ: Well, if they really want to urge that, I'd say that what we're talking about is very simple. Is a person dead?--in which case, for the sake of the argument, we'll say anything goes. Or is he alive?--in which case your removing his organs is going to kill him. Is killing of the innocent merely a technicality?
HH: You're saying this is a case where you should not weigh one good thing against another. Trying to go by "the greatest good for the greatest number," the utilitarian ethical principle, will lead you into doing things you didn't really want to do.
PQ: That's right. As the pope said in his most recent encyclical, there are moral absolutes. Not everything is a moral absolute--all kinds of things may be good or bad under the circumstances. But some things are bad--you're not allowed to do them, ever. One of those, the primary one, is killing the innocent.
HH: Regardless of the utilitarian calculus--the good that might accomplish.
PQ: Right. Someplace way back in Roman literature a city is besieged, and the enemy, the besiegers, say, "We will let you all off the hook, if you will take up on the wall and kill Mr. X and throw his head down to us."
Are you allowed to do it? No. Even though the whole city is going to die? Even though the whole city is going to die.
In other words, there are some things that are more important than living. Namely living well. And if you must destroy your humanity--and that's what you ultimately do in violating one of these things--then you've done a worse thing than dying. So it is definitely not a question of utilitarian calculus.
I gave a talk on this very soon after I came up here from Saint Louis, about '81 or '82, out at our medical center. There was a good crowd, quite a number of doctors who already had their degrees as well as students, nurses, and so on. What the doctors--at least the persistent questioners--were after right away was, "Look, you admit this person is as good as dead. He can't survive. You admit that he will not survive more than a week."
I said, that's right. I admit that totally.
"And that he's very likely not even to survive for 24 hours?"
I said, that's right.
"And this person, if you take his heart, it will help someone else live a much longer life than otherwise?"
I said, OK, that's fine.
"Why can't you take the heart?"
I said, you can't take the heart because that's killing an innocent person.
HH: Even though you've defined that person as someone who's dead.
PQ: Oh, but they were willing to accept the distinction between brain death and the death of a person. That was not where they were hung up. The serious questioners in the audience were hung up on the utilitarian calculus entirely: "What would be wrong with taking the heart under these circumstances?"
Now there are other cases: Aunt Marne is old, she's miserable, she makes life hell on wheels for everybody around her. Even more strikingly, she's miserable herself, both physically and mentally in a terrible anguish. If she died within the month, we would have all that insurance, we who have been taking care of her and have spent much more than the insurance is worth in taking care of her. Why not?
HH: You're saying it's the same question.
PQ: And indeed, in the life of almost anybody who's lived for very many years you can pick up cases where it would be so advantageous to one group of the living if somebody else died a little prematurely. Not a lot--we're not talking about gross murders. We're talking about refined murders, the worst kind of murders, premeditated long in advance.
And that's what people don't see. What the utilitarian misses is what evil actions, or good actions for that matter, do to the person who knowingly consents to them.
There's an excellent book by Paul Ramsey, The Patient as Arson, in which he points out that Muslims, Christians, Jews, and Hindus have always held that strength is given to the strong for the sake of exercising that strength for the weak. That's ultimately what a university is about: those who have knowledge share it with those who don't. That's what medicine is about: those who have skill in healing share it with those who need the healing. And so for law, and so for the clergy, supposedly, and everything.
All human structure in a truly civilized society of any kind is precisely geared so that those who have use their power, whatever its nature, for those who lack that power. And therefore any abuse of that power is destructive to a level and depth that greatly exceeds any utilitarian good.
HH: These are not things we're constantly encouraged to think about. You have to go against the grain to spend any time on them at all.
PQ: That's right. In fact, that's what my mother used to berate me for. She said, "Why are you wasting all your time and your energy on something which, no matter even if you're right, nobody is going to pay any attention to it? You're beaten before you start."
HH: Thanks, Mom!
PQ: Well, she was right. But on the other hand, if it was a question of truth, then it seemed to me one had to deal with it.
Art accompanying story in printed newspaper (not available in this archive): photo/Jim Alexander Newberry.