David Wainwright Evans, MD, FRCP: Rest in Peace

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David Wainwright Evans was a good man, a good scholar, and a good friend. His vita would be impressive by any standard: service in the Royal Air Force in World War II, both as a bomber pilot and a fighter pilot, Fellow of the Royal Society of Physicians, Consulting Cardiologist, Papworth Hospital, UK, and Fellow Commoner, Cambridge University, UK. I first met Dr. Evans via e-mail in 1996. I was planning to edit a book of scholarly articles in opposition to brain death criteria for declaring a person dead. Dr. Evans immediately agreed to contribute to the volume, and he wrote a fine chapter, “The Demise of ‘Brain Death’ in Britain.” He worked with a number of scholars and physicians on article on brain death and on ethical issues that arise if brain death is not death. This has obvious implications for the ethics of organ donation. Dr. Evans believed, as I do, that removal of unpaired vital organs from the “brain dead” individual is the taking of innocent human life and is therefore morally wrong. Dr. Evans remained true to his values even when pressured to change, and he retired early from cardiology in order to express openly his beliefs. That takes a great deal of moral courage, and I admire Dr. Evans for that. He was also an opponent of war, having seen its destructiveness as an RAF pilot. Dr. Evans was a fine Christian gentleman, a member of the Church of England who was faithful in his duty to God.

I had the privilege of seeing Dr. Evans twice in person while visiting England, first to attend a conference, and next on vacation (or “holiday” as the British call it). He and his wife, Rosemary, were gracious hosts and both visits were pleasant for me and (in the second visit) for my wife as well. Dr. Evans and I exchanged hundreds, perhaps thousands, of e-mails, in an excellent personal and professional friendship. The suddenness of his passing was a shock, but he was well into his eighties and died peacefully in his sleep. He is in the hands of God now, and I hope to see him again one day in a far better world than this one. Rest eternal grant unto him, O Lord, and may light perpetual shine upon him. May his soul, and the souls of all the faithfully departed in Christ, rest in peace. A-men.

Dr. Richard Nilges: A Tireless Advocate of Truth

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rest area

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Dr. Richard Nilges, neurologist and long-time critic of brain death criteria for human death, died last month after a long, productive life. I never met him in person, but via e-mail and telephone–the first time was in 1996. I was interested in editing a book of essays opposing brain death criteria. Never having edited a book before, I asked both Dr. Paul Byrne, a neonatologist and the dean of opponents of brain death criteria, and Dr. Nilges to help, and both graciously agreed. Dr. Nilges wrote a chapter for the book, which was published in 2000 as Beyond Brain Death: The Case Against Brain-Based Criteria for Human Death (Kluwer [now distributed by Springer-Verlag]). Dr. Nilges’ chapter, “Organ Transplantation, Brain Death, and the Slippery Slope: A Neurosurgeon’s Perspective,” was the most passionate chapter in the book, reflecting a lifetime of difficult battles against the medical establishment. He retired early after serving as an Attending Staff Member in Neurosurgery at Swedish Covenant Hospital, Chicago. His conscience would no longer allow him to declare patients dead using brain=based criteria. For many years after his retirement, Dr. Nilges, writing with Paul Byrne and others (such as Dr. David W. Evans and David Hill in the U.K.), spoke out against brain death criteria when medical and scholarly opponents of brain-based criteria for death were scarce (the late Professor Hans Jonas of the New School for Social Research was an exception). During the 1970s and 1980s, Dr. Nilges’ position was considered to be a fringe position by the medical and medical ethics establishments. But the work of Dr. Nilges and other pioneering opponents of brain death criteria eventually bore fruit. Professor Stuart Youngner began to hack at the medical arguments in favor of brain death criteria, bringing out arguments concerning continuing brain function in patients declared “bran dead” which Byrne and Nilges had noted years before. The real breakthrough came with Dr. Alan Shewmon, a pediatric neurologist at the UCLA School of Medicine, came out in opposition to brain death criteria. Eventually an entire network of physicians, philosophers, sociologists, and other scholars came to oppose brain death criteria; many questioned the morality of the current system of organ transplantation. If brain death is not death, then removing vital organs from the “brain dead” patient involves killing the patient. Not all opponents of brain death criteria oppose organ transplantation–Dr. Truog does not–but even Dr. Truog believes that people contemplating signing a donor card and families considering donation ought to be told that organ transplantation from a beating heart “brain-dead” donor kills the donor.

Now articles opposing brain death criteria have been published in major medical and bioethics journals. Some younger scholars are writing against brain death criteria, such as Professor Scott Henderson in his Death and Donation (Wipf and Stock, 2011). Thus there is a third generation of scholars willing to oppose the medical establisment’s continued support of brain death criteria. This would not have been possible without the pioneering and courageous work of the first generation opponents, including Dr. Richard Nilges. His legacy and influence will live on in the patients he helped over the years and in the scholars he inspired to have the courage to question what they may have previously taken for granted.

Dr. Nilges was a devout Roman Catholic whose faith was central to his life. Requiescat in pace.

Your Tax Dollars Used to Take Organs

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Ambulance Interior

Imagine you have chest pains. Someone near you calls 911. At dispatch, two ambulances are sent for you. One has paramedics who will do their best to keep you alive, especially if you go into cardiac arrest; the medical workers in the other ambulance have a different purpose in mind–and that ambulance remains hidden. Before the ambulance arrives, your heart stops. A bystander begins CPR, and the ambulance arrives five minutes after that. Paramedics work on you for a half hour, then “call the code,” in effect, pronounce you dead. The paramedics working on you do not know about the other ambulance until their supervisor tells them to call the code. You are then transported to the other ambulance, and CPR is resumed. The other ambulance is marked, “Organ Preservation Unit.” CPR will be continued, not to save your  life, but to preserve your kidneys–and perhaps other organs–which will be removed after you arrive at the hospital. Those organs will be transplanted into others.

$1.5 million dollars of your federal taxpayer’s money is going to such a program in New York City. This practice is fraught with ethical problems. First, even if paramedics on a specific case do not know for sure whether the other ambulance is present, this program is public knowledge (there is a story in the December 1, 2010 New York Times about it). Any paramedic who receives a cardiac arrest or heart attack call will know that the other ambulance may be waiting. This could bring psychological pressure on the paramedics to stop CPR earlier than they would like. In addition, there are cases, especially early in the history of CPR, in which individuals with normal body temperature were successfully resuscitated after more than 30 minutes of CPR. It is clear that just because a patient has 30 minutes of CPR, this does not mean that the patient is dead; the brain can still be living and the heart resuscitatible. What would happen if the person’s heart restarted after the delay between stopping and resuming CPR? And even if the heart does not restart, the patient is only “dead” in a clinical, not a biological sense. It is removing the patient’s organs that kills the patient. This is medicine not to benefit the patient but to preserve organs, and it violates the fundamental end of medicine to “do no harm” (nonmaleficence). How much permission or informed consent can be given by families in such situations? Are the organ transplanters so desperate for organs that they will violate any principle of decency and medical ethics in order to obtain more organs? No utilitarian justification can make up for the distortion of moral medicine in this “trial” policy. It should be stopped immediately.

The “Permanent Vegetative State” and Consciousness

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Terri Schiavo

A “vegetative state” is a state in an individual allegedly lacks conscious awareness, though he breathes on his own and has sleep-wake cycles. After one year in a vegetative state, the patient is considered to be in a permanent vegetative state (PVS), lacking any possibility of regaining consciousness. For years, many neurologists have blithely stated that individuals in a PVS lack all conscious awareness. These claims were (and continue to be) made in spite of a fundamental ignorance of the nature of consciousness generation in the brain (as David W. Evans, M.D., has long pointed out [Evans, 2000]). Many advocates of so-called “higher brain death” have argued that such patients should be declared dead and used as organ donors. Similar claims have been made concerning anencephalic infants (infants who have a brainstem, but lack a cerebrum and thus lack a cerebral cortex). If such patients are permanently unconscious, the argument goes, they lack personhood and thus are proper candidates for organ donation.

Although a good philosophical argument can be made against the consciousness theory of personhood (the roots of which lie in Descartes and Locke), a strong empirical case can be made that some (perhaps most) of patients diagnosed with a PVS are conscious. First, in the case of anencephalic infants, Alan Shewmon, M.D., a pediatric neurologist who teaches at the UCLA School of Medicine, studied three children with either no cerebral cortex or an almost nonexistent cerebral cortex. Shewmon’s resulting article (co-written with Gregory A. Holmes, M.D. and Paul A. Byrne, M.D. [Shewmon, Holmes, and Byrne, 1999]) notes that these children, with ages ranging from 5-17, “possessed discriminative awareness, eg, distinguishing familiar from unfamiliar people and environments, social interaction, functional vision orienting, musical preference, appropriate affective responses, and associative learning.” (p. 364). Failure to recognize the results of neuroplasticity (parts of the brain taking over some functions of the missing parts) was due to doctors assuming that such infants could not be conscious, and therefore, these infants were allowed to die.

Neurologists have also been overly quick to deny the possibility for consciousness for individuals in a PVS. As early as 1996, there was a case study published in the prestigious New England Journal of Medicine concerning a woman diagnosed as being in a PVS who began to recover after fifteen months. (Childs and Mercer, 1996). She recovered to the point of being able to follow conversations and even speak individual words or phrases. Though severely disabled, she was clearly conscious. Another 1996 study from the United Kingdom (Andrews, et al., 1996) revealed that 43% of patients in a disability hospital who had been diagnosed with a PVS were, in fact, misdiagnosed. Many of these misdiagnosed patients are actually in a “minimally conscious state.” (Giacino, et al., 2002).

The most dramatic case of consciousness in an individual diagnosed with a PVS is that of a Belgian man, Rom Houben. But new technology revealed that his brain has been functioning at a level consistent with consciousness. A trained therapist, Linda Wouters, learned to communicate with Mr. Houben by feeling pressure from his fingers and using a keyboard. Mr. Houben has apparently been conscious the entire twenty-three years of his supposed PVS. (Casert, 2009). Despite such strong evidence, University of Pennsylvania bioethicist Arthur Caplan questioned whether Mr. Houben is really communicating. Caplan claims that the movements of his hand on a keyboard are really the work of therapist Linda Wouters. “That’s called facilitated communication. That is Ouija board stuff. It’s been discredited time and time again. When people look at it, it’s usually the person doing the pointing who’s doing the messages, not the person they claim to be helping.” (Casert, 2009). The magician and consummate skeptic James Randi has also joined in the criticism.

But Mr. Houben’s doctor, Stephen Laureys, insists that Mr. Houben has been communicating, noting that Houben has made progress over time in his ability to communicate (Casert [2], 2009). Laureys, in his own study of patients diagnosed with PVS, has confirmed the 40% misdiagnosis rate. (Connolly, 2009). But even in other cases, the old adage, of which Shewmon is fond, follows: “Absence of evidence is not evidence of absence.” That is, absence of evidence of consciousness in a PVS patient is not evidence of the absence of consciousness.

As far as Professor Caplan’s arguments go, he has not, as far as I am aware, seen Mr. Houben. He automatically assumes that Linda Wouters is moving Mr. Houben’s fingers to the right letters on the keyboard. He assumes that a man with Mr. Houben’s degree of brain damage could not communicate using the complex sentences he uses. This simply begs the question of Mr. Houben’s actual level of consciousness. Basically Professor Caplan’s argument amounts to: “I know that Mr. Houben cannot be conscious; therefore he cannot be conscious.” Caplan assumes that scientists know beyond a reasonable doubt the level of brain activity necessary to sustain consciousness and to sustain complex cognitive states. Yet study after study and case after case raise questions about this claim. Perhaps scientists are more ignorant about such matters than Professor Caplan believes. I suppose that Mr. Houben would have to speak using his (Houben’s) own voice to Professor Caplan for him to believe that Mr. Houben is conscious. But if that happened, perhaps I assume too much: Professor Caplan could still insist that a ventriloquist is faking Mr. Houben’s voice. One wonders about the falsifiability of Professor Caplan’s position.

If many PVS patients show evidence of consciousness, and many of the remainder might still be conscious, it is wrong to consider such patients “dead,” and is doubly wrong to consider changing the law to allow the harvesting of their organs. It is possible that the real source of the fear from Mr. Houben’s case is that more severe forms of brain pathology, such as so-called “whole-brain death” (the U.S. standard) and “brainstem death” (the UK standard) may also be disqualified due to the possibility that there could be residual consciousness in these patients. If such patients could be conscious, then the entire basis for harvesting organs from “brain dead” individuals would be destroyed. Thus, bioethicists may want to head off this chain of reasoning “at the pass” by denying that a long-term PVS patient, such as Mr. Houben, could be conscious and communicating.

REFERENCES

Andrews K, Murphy L, Munday R, Littlewood C (1996). Misdiagnosis of the vegetative state: retrospective study in a rehabilitation unit BMJ 313:13-16 (6 July).

Casert R (2009). Comatose for 23 years, Belgian feels reborn. The Associated Press, 25 November.

Casert, R. [2] (2009). Doc takes on coma skeptics. The Associated Press, 27 November.

Childs NL, Mercer WN (1996). Late improvement in consciousness after post-traumatic vegetative state. NEJM 334:24-25.

Connolly K (2009). Car crash victim trapped in ‘coma’ for 23 years was conscious. At: guardian.co.uk, 23 November 2009. Accessed 23 November 2009.

Evans DW (2000). The demise of ‘brain death’ in Britain. In: Potts M, Byrne PA, Nilges RG (eds.), Beyond Brain Death: The Case Against Brain-Based Criteria for Human Death. Dordrecht, The Netherlands: Kluwer Academic Publishers.

Giacino JT, Ashwal S, Childs N., et al. (2002). The minimally conscious state: Definition and diagnostic criteria. Neurology 58:349-353 (12 February).

Shewmon DA, Holmes GL, Byrne PA (1999). Consciousness in congenitally decorticated children: developmental vegetative state as self-fulfilling prophecy. Dev Med Child Neurol 41:364-374.

Correspondence to NATURE re “Delimiting Death”

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There was an excellent editorial in NATURE, the distinguished science journal, admitting the difficulties with brain death criteria for human death. I sent a letter to the editor in reply, but it was rejected (understandably, given the number of letters the journal must receive). It is posted below:

To the Editor:

The editorial in Nature (“Delimiting Death”)1 refers to the serious problems with the “whole brain death” criterion defended by the 1981 U. S. President’s Commission Report. The editorial specifically discusses continued brain function in patients declared “brain dead.” This implies that “all functions of the entire brain, including the brain stem” have not ceased, and therefore the entire brain is not dead. Yet the editorial claims that physicians “are usually obeying the spirit…of the law” when they pronounce patients with continuing brain function dead. The justification for this view is that death “is not a phase transition whereby a person stops being alive and becomes dead in an instant. It is a long process during which systems, networks and cells gradually disintegrate.”
However, the editorial also affirms that “[a]t some point, the person is no longer there, and can never be made to return” (italics mine). Now the editorial cannot have it both ways: it cannot both affirm death to be a process and then claim that at some point the person is gone. Dying is a process, but not death itself. One is either a person at time t or not a person at time t; there is no state in-between. The possibility that “brain dead” individuals may be alive underlines the morally problematic nature of physicians’ declaring a patient “brain dead” and removing the patient’s vital organs for transplant. Killing “brain dead” donors for their organs, no matter how physiologically impaired they may be, places physicians in the role of killing patients, violating their fundamental duty of nonmaleficence. The fact that such killing is done to save others does not magically change killing a human person into a noble moral act. Nor does the consent of the donor’s family and the donor’s prior altruism make an unethical act ethical.
The editorial finally suggests that the information about brain death be carefully disseminated, so that the general public does not gain full information about the current debate, lest the current organ shortage be worsened. Such withholding of the truth from people who are considering donating their organs is unethical; if organ donation from the brain dead involves killing patients, such a practice should be abandoned, and no utilitarian justification is sufficient to justify it.

1. Delimiting death. Nature 461, 570 (1 October 2009), doi:10.1038/461570a

Michael Potts, Ph.D.
Professor of Philosophy
Methodist University

Another philosopher’s blog

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Human brain

Greetings. I am a philosophy professor at Methodist University in Fayetteville, North Carolina. Most of my academic work has been in medical ethics, especially the issue of the determination of death, but I have also written in the philosophy of religion. I edited, with Paul A. Byrne, M.D., and Richard G. Nilges, M.D., an anthology, Beyond Brain Death: The Case Against Brain Based Criteria for Human Death, which was published by Kluwer Academic Publishers in 2000. I also have several articles and book chapters in that area. I have also written on near-death experiences, philosophy and literature, against the consumer model of higher education, and on chess and education. I enjoy creative writing, and have a poetry chapbook, From Field to Thicket, which won the 2006 Mary Belle Campbell Chapbook Award of the North Carolina Writers’ Network. I’m currently working on more academic pieces, my second novel (I’m seeking a publisher for my first), and more poetry. I enjoy playing chess (USCF rating: 1646), vegetable gardening, canning, and reading in just about every subject. Recently, I’ve been focusing on horror fiction.

As my first topic for this blog, I’ll write about brain death criteria. In 1968, The Harvard Ad Hoc Committee on Brain Death formulated the first set of brain-based criteria for human death. It was a version of “whole brain death,” and said that an individual could be declared dead when the entire brain, including the brainstem, ceases to function. This view was affirmed by the President’s Commission report of 1981 on the determination of death, and enshrined in law in the Uniform Determination of Death Act, which has now been passed by almost all states. The President’s Commission report became the “Bible” on brain death, and was rarely questioned until recently.

Many people who sign their organ donor cards do not realize that if they are declared dead by brain death criteria, rather than by cardiovascular criteria, their hearts will still be beating when they are wheeled into surgery to remove their organs. They are not “dead” in the usual sense of the word. The President’s Commission claimed that brain dead individuals are dead because their bodies no longer have organic unity; once the brain is dead, their bodies are just isolated sets of organs that are dependent on machines to function. But this is sloppy reasoning. Dependence on machines does not mean a person is dead; many conscious people are dependent on ventilators but are not considered “dead”. Even if it were true, as the Commission claimed, that brain dead peoples’ hearts stop quickly after brain death, this is only a prognosis of impending death, not a diagnosis that death has already occurred. In any case, there have been long-term survivors of brain death–brain dead pregnant women have been maintained over 200 days until they gave birth to healthy children. And Alan Shewmon, Professor of Pediatric Neurology at UCLA, has written about a boy who survived over 14 years with his brain totally liquified. He was on a ventilator, but he maintained a normal blood pressure. To deny his body was functioning as an organic unity is ludicrous.

EEG activity has been noted in an number of brain dead patients, though this is said to be “residual.” Some brain dead patients maintain normal body temperature, a sign that a part of the brain, the hypothalamus, is still working. Some brain dead patients have had heart rate and blood pressure increases during organ donation surgery. This evidence suggests that the “whole” in “whole brain death” is inaccurate. Given the ignorance of the generation of consciousness in the brain, do we really want to remove organs from individuals with some brain function?

I argue, then, that “brain dead” individuals whose circulation and respiration (in the important sense of oxygen exchange in the lungs and at the cellular level) continue, are living human persons, and that removing unpaired vital organs, such as the heart or liver, from these patients, kills them. Although some scholars in this area, such as Robert Truog, say, in effect, “Since brain dead people are in such bad shape, it’s okay to kill them for their organs,” those who accept a sanctity of life ethic are being inconsistent when they support the current system of organ donation.