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Research on the brain dead
Volume 96 Number 1
The issue cannot be resolved by simply equating brain death with death in the total sense. There is deep disagreement over the question of whether brain death is synonymous with death. Casado de Frias et al apparently did not equate brain death with the death of their patient, for seven days after the EEG became isoelectric, they report: "The study could not be continued because the child died from a mechanical ventilation problem." A complete summary and refutati~ia of the arguments equating brain death with death ~ is beyond the scope of this commentary, but a few observations should be made. Although it is widely accepted that brain death is a valid indication for discontinuing medical care, the reason is not necessarily because the patient is dead, but because the patient no longer has any interest in being maintained. In this sense, brain death might simply be another on a long list of medical problems which make medical care pointless from the patient's and family's perspective. Other experiences and intuitions suggest that death of the brain is not the same as death in the traditional sense. A headless animal is clearly not dead on that basis alone. We would not feel right about burying Someone with a beating heart, even though he were brain dead. Brain death appears to be a critical juncture in the complicated process which constitutes death of the organism, 3 but by itself it is not equal to death. Such actions, such as discontinuing medical care, may legitimately be effected long before brain death occurs. Others, such as burial, must wait for cardiorespiratory arrest. The unresolved issue is where on that continuum may research be conducted, what kinds of research, and with what approval. Agreement on these questions might be reached independent of resolution of the controversy over the definition of death, With regard to setting policy on experimentation, two empiric points should be made. (1) The clinical diagnosis of brain death may be in error. Clinicians, EEG technicians, and equipment are fallible, and the list of drugs and disorders which can mimic brain death grows steadily. 4 Since such errors are presumably more rare in cadavers which are clearly dead, research on the brain dead should be hedged by strict standards to assure the accuracy of the diagnosis. (2) We do not know whether patients who meet Harvard criteria ~ of brain death experience discomfort. It is extremely unlikely and probably unknowable, but the risk-averse individual might prefer that painful procedures not be done on him, or that his life not be prolonged to allow even painless procedures; Suppose, however, that an individual, or his next of kin, had clearly stated, before death, that he had no objection to such research being done on him, similar to expressed wishes that one's organs or body as a whole be used for
Editor's column
55
some constructive purpose after death. We generally respect the wishes of the deceased (or his family) in such matters, not because the deceased has an interest in what is done with his body, but because the living have an interest in how these contracts are respected, and in how cadavers are treated. We want wills to be executed, and respect paid the dead, because our own sense of wellbeing, while we are still alive, would be threatened if we felt we could not control events after our own death. Premortem consent from a competent adult to use his body for research at the time of brain death should therefore be accorded the same respect as any aspect of a valid will, such as donation of organs for transplantation or donation of the cadaver as a whole. Although this leaves unresolved the use of nonconsenting subjects' bodies, one might consider it analagous to nontherapeutic research of minimal risk. In this area there is a growing consensus,6 withsome objecti0ns,7 that it is permissible to use nonconsenting subjeCts in such a way, provided the purpose of the research is important and the information cannot be obtained in any other way. One objection remains. The societal interest in the way bodies are treated aftei" death would not be well served by allowing cadavers to be put to any use, including desecration. If, for example, a competent person gave permission to have his body hung in the village square, the community would presumably object and prohibit such conduct, regardless of the wishes of the deceased or his family. The objection would not bejust the public health hazard, but a more amorphous yet important concern that desecration of a human body, even though clearly dead, threatens respect for the living. Because the brain-dead person more clearly resembles the living than does the dead person, incursions on the brain-dead body are more likely to evoke this concern than research on the clearly dead. In this type of argument one would find justification for state regulation of research on the brain dead, beyond the requirements for antemortem consent, and beyond the present rules affecting research on dead cadavers. Gaylin,8 drawing from arguments by May '~ and Jonas, '~ appealed to this concern by speculating on the possible uses to which the brain dead might be put. He suggested a new term--neomort-to distinguish these useful subjects from the dead patient whose body was of much less utility. Acknowledging the astounding benefits to be gained from using such neomorts for training, research, organ donation, and manufacture of hormones and antibodies, he suggested that such an enterprise would evoke revulsion because of the "inhumanity" of it all. in summary, it is not clear that brain-dead persons are dead. Regardless of the resolution of that question, there are reasons for treating them differently than the clearly
56
Editor's column
The Journal of Pediatrics January 1980
living, a n d p e r h a p s for treating t h e m differently t h a n the clearly dead. It should be permissible to w i t h h o l d medical care, settle t h e i r estates, and harvest their organs, provided p r o p e r consent has been obtained. In all these actions, society has interests to be served a n d protected, a n d this is d o n e by passing laws, writing regulations, a n d hearing cases in court. Similarly, it would seem acceptable to c o n d u c t clinical research on the brain dead b u t such research could legitimately be restricted, since the living have interests to be protected. T h e boundaries o f Such research have not previously been the subject of regulation. As a general principle we m i g h t b e g i n with the principles governing other research of m i n i m a l risk on n o n c o n s e n t i n g subjects: it is permissible w h e n a n important social purpose is being served, w h e n consent from a suitable g u a r d i a n is obtained, a n d w h e n the' invasion is done in a way t h a t Seeks to avoid desecration a n d preserves respect for the h u m a n form.
Norman Fost, M.D., M.P.H. Department of Pediatrics Program in Medical Ethics University of Wisconsin School of Medicine 600 Highland Ave. Madison, WI 53792
REFERENCES 1. Veith FJ, Fein JM, Tendler MD, et al: Brain death: I. A status~report of medical and ethical considerations. II. A status report 0f legal considerations, JAMA 238:1651, 1744, 1977. o 2. Green M, and Wikler D: Brain death and personal identity, Philosophy and Public Affairs (in press). 3. Morison RS: Death: process or event, Science 173:694, 1971'. 4. Black PM: Brain death, N Engl J Med 299:338, 393, 1978. 5. Ad Hoc Committee of the Harvard Medical School to examine the definition 0[ brain death. A definition of irreversible coma, JAMA 205:337, 1968. 6. National Commission for the Protection of Human Subjects in Biomedical and Behavioral Research: Report and Recommendations: Research Involving Children, DHEW Publication No. (OS)77-0004, Washington, DC, 1977. 7. Ramsey P: A reply to Richard McCormick--The enforcement of morals: nontherapeutic research on children, Hastings Center Report 6:21, 1976. 8. Gaylin W: Harvesting the dead, Harpers September, pp 23-30, 1974. 9. May W: Attitudes toward the newly dead, Hastings Center Studies 1:3, 1973. 10. Jonas H: Against the stream: comments on the definition and redefinition of death, in Philosophical essays: From ancient creed to technological man, Englewood Cliffs, N J, 1974, Prentice-Hall, Inc.
Copyright information The appearance of a code at the bottom of the first page of an original article ii1 this JOURNAL indicates the copyright owner's consent that copies of the article may be made for personal or internal use, or for the personal or interna{ use of specific clients. This consent is given on the condition, however, that the copier pay the stated per copy fee through the Copyi'igh{ Clealance Center, Inc.. P.O. Box 765, Schenectady. N.Y. 12301. (518) 374-4430. for copying beyond that permitted by Sections 107 or 108 of the U.S, Copyright Law, This consent does not extend to other kinds of copying, such as copying for general distribution, for advertising or promotional purposes, for creating new collective works, or for resale.
The issue cannot be resolved by simply equating brain death with death in the total sense. There is deep disagreement over the question of whether brain death is synonymous with death. Casado de Frias et al apparently did not equate brain death with the death of their patient, for seven days after the EEG became isoelectric, they report: "The study could not be continued because the child died from a mechanical ventilation problem." A complete summary and refutati~ia of the arguments equating brain death with death ~ is beyond the scope of this commentary, but a few observations should be made. Although it is widely accepted that brain death is a valid indication for discontinuing medical care, the reason is not necessarily because the patient is dead, but because the patient no longer has any interest in being maintained. In this sense, brain death might simply be another on a long list of medical problems which make medical care pointless from the patient's and family's perspective. Other experiences and intuitions suggest that death of the brain is not the same as death in the traditional sense. A headless animal is clearly not dead on that basis alone. We would not feel right about burying Someone with a beating heart, even though he were brain dead. Brain death appears to be a critical juncture in the complicated process which constitutes death of the organism, 3 but by itself it is not equal to death. Such actions, such as discontinuing medical care, may legitimately be effected long before brain death occurs. Others, such as burial, must wait for cardiorespiratory arrest. The unresolved issue is where on that continuum may research be conducted, what kinds of research, and with what approval. Agreement on these questions might be reached independent of resolution of the controversy over the definition of death, With regard to setting policy on experimentation, two empiric points should be made. (1) The clinical diagnosis of brain death may be in error. Clinicians, EEG technicians, and equipment are fallible, and the list of drugs and disorders which can mimic brain death grows steadily. 4 Since such errors are presumably more rare in cadavers which are clearly dead, research on the brain dead should be hedged by strict standards to assure the accuracy of the diagnosis. (2) We do not know whether patients who meet Harvard criteria ~ of brain death experience discomfort. It is extremely unlikely and probably unknowable, but the risk-averse individual might prefer that painful procedures not be done on him, or that his life not be prolonged to allow even painless procedures; Suppose, however, that an individual, or his next of kin, had clearly stated, before death, that he had no objection to such research being done on him, similar to expressed wishes that one's organs or body as a whole be used for
Editor's column
55
some constructive purpose after death. We generally respect the wishes of the deceased (or his family) in such matters, not because the deceased has an interest in what is done with his body, but because the living have an interest in how these contracts are respected, and in how cadavers are treated. We want wills to be executed, and respect paid the dead, because our own sense of wellbeing, while we are still alive, would be threatened if we felt we could not control events after our own death. Premortem consent from a competent adult to use his body for research at the time of brain death should therefore be accorded the same respect as any aspect of a valid will, such as donation of organs for transplantation or donation of the cadaver as a whole. Although this leaves unresolved the use of nonconsenting subjects' bodies, one might consider it analagous to nontherapeutic research of minimal risk. In this area there is a growing consensus,6 withsome objecti0ns,7 that it is permissible to use nonconsenting subjeCts in such a way, provided the purpose of the research is important and the information cannot be obtained in any other way. One objection remains. The societal interest in the way bodies are treated aftei" death would not be well served by allowing cadavers to be put to any use, including desecration. If, for example, a competent person gave permission to have his body hung in the village square, the community would presumably object and prohibit such conduct, regardless of the wishes of the deceased or his family. The objection would not bejust the public health hazard, but a more amorphous yet important concern that desecration of a human body, even though clearly dead, threatens respect for the living. Because the brain-dead person more clearly resembles the living than does the dead person, incursions on the brain-dead body are more likely to evoke this concern than research on the clearly dead. In this type of argument one would find justification for state regulation of research on the brain dead, beyond the requirements for antemortem consent, and beyond the present rules affecting research on dead cadavers. Gaylin,8 drawing from arguments by May '~ and Jonas, '~ appealed to this concern by speculating on the possible uses to which the brain dead might be put. He suggested a new term--neomort-to distinguish these useful subjects from the dead patient whose body was of much less utility. Acknowledging the astounding benefits to be gained from using such neomorts for training, research, organ donation, and manufacture of hormones and antibodies, he suggested that such an enterprise would evoke revulsion because of the "inhumanity" of it all. in summary, it is not clear that brain-dead persons are dead. Regardless of the resolution of that question, there are reasons for treating them differently than the clearly
56
Editor's column
The Journal of Pediatrics January 1980
living, a n d p e r h a p s for treating t h e m differently t h a n the clearly dead. It should be permissible to w i t h h o l d medical care, settle t h e i r estates, and harvest their organs, provided p r o p e r consent has been obtained. In all these actions, society has interests to be served a n d protected, a n d this is d o n e by passing laws, writing regulations, a n d hearing cases in court. Similarly, it would seem acceptable to c o n d u c t clinical research on the brain dead b u t such research could legitimately be restricted, since the living have interests to be protected. T h e boundaries o f Such research have not previously been the subject of regulation. As a general principle we m i g h t b e g i n with the principles governing other research of m i n i m a l risk on n o n c o n s e n t i n g subjects: it is permissible w h e n a n important social purpose is being served, w h e n consent from a suitable g u a r d i a n is obtained, a n d w h e n the' invasion is done in a way t h a t Seeks to avoid desecration a n d preserves respect for the h u m a n form.
Norman Fost, M.D., M.P.H. Department of Pediatrics Program in Medical Ethics University of Wisconsin School of Medicine 600 Highland Ave. Madison, WI 53792
REFERENCES 1. Veith FJ, Fein JM, Tendler MD, et al: Brain death: I. A status~report of medical and ethical considerations. II. A status report 0f legal considerations, JAMA 238:1651, 1744, 1977. o 2. Green M, and Wikler D: Brain death and personal identity, Philosophy and Public Affairs (in press). 3. Morison RS: Death: process or event, Science 173:694, 1971'. 4. Black PM: Brain death, N Engl J Med 299:338, 393, 1978. 5. Ad Hoc Committee of the Harvard Medical School to examine the definition 0[ brain death. A definition of irreversible coma, JAMA 205:337, 1968. 6. National Commission for the Protection of Human Subjects in Biomedical and Behavioral Research: Report and Recommendations: Research Involving Children, DHEW Publication No. (OS)77-0004, Washington, DC, 1977. 7. Ramsey P: A reply to Richard McCormick--The enforcement of morals: nontherapeutic research on children, Hastings Center Report 6:21, 1976. 8. Gaylin W: Harvesting the dead, Harpers September, pp 23-30, 1974. 9. May W: Attitudes toward the newly dead, Hastings Center Studies 1:3, 1973. 10. Jonas H: Against the stream: comments on the definition and redefinition of death, in Philosophical essays: From ancient creed to technological man, Englewood Cliffs, N J, 1974, Prentice-Hall, Inc.
Copyright information The appearance of a code at the bottom of the first page of an original article ii1 this JOURNAL indicates the copyright owner's consent that copies of the article may be made for personal or internal use, or for the personal or interna{ use of specific clients. This consent is given on the condition, however, that the copier pay the stated per copy fee through the Copyi'igh{ Clealance Center, Inc.. P.O. Box 765, Schenectady. N.Y. 12301. (518) 374-4430. for copying beyond that permitted by Sections 107 or 108 of the U.S, Copyright Law, This consent does not extend to other kinds of copying, such as copying for general distribution, for advertising or promotional purposes, for creating new collective works, or for resale.