Pediatric Neurology 51 (2014) 476e477
Contents lists available at ScienceDirect
Pediatric Neurology journal homepage: www.elsevier.com/locate/pnu
Perspectives in Pediatric Neurology
Defining Death: When Physicians and Family Differ Galen N. Breningstall MD * Department of Pediatric Neurology, Gillette Children’s Specialty Healthcare, St. Paul, Minnesota
A 12-year-old boy was struck by a truck and then struck by a second vehicle. Resuscitation at the scene was of limited efficacy. In the emergency department, there was pulseless electrocardiogram activity for 20 minutes. An initial head computed tomography (CT) revealed diffuse edema. Cervical spine radiographic CT revealed a C1-C2 dislocation. He was believed to be brain dead from the time of his presentation. For religious reasons, the parents did not allow formal brain death testing. Indeed, it was forbidden to discuss brain death with the parents. Although an apnea test was never performed, at one point he had no spontaneous respiratory effort with a pCO2 >65. The patient had likely been quite hypoxic for 20-30 minutes after the injury. Repeated head CT scans revealed loss of cerebral architecture. Nasal discharge of blackish appearance was believed to be necrotic brain tissue, testing positive for myelin basic protein. An electroencephalogram was never performed because of parental refusal. Examiners commented that he had stereotypical spinal reflexes and that he “will move parts of his body at various points.” The patient had diabetes insipidus. C1-C2 dislocation itself is a hangman’s fracture. A cervical collar was used. The patient was discharged home after 2.5 months. He was ventilator dependent with a tracheostomy and gastrostomy. He remained at his home with extensive home health nursing until he sustained a cardiac death 13.5 months after his injuries. Numerous therapists who worked with him during that time aver that there was some, albeit quite limited, responsiveness of the patient. Although formal brain death declaration was never made, there seems little doubt he would have met some of the many criteria for brain death.1,2 Many criteria for brain death would imply that a patient might be brain dead in one institution but brain alive in another. Brain death is “a clinical neuropathologic state fulfilling official diagnostic
Article History: Received May 28, 2014; Accepted in final form June 13, 2014 * Communications should be addressed to: Dr. Breningstall; Department of Pediatric Neurology; Gillette Children’s Specialty Healthcare; 200 E University Ave; St. Paul, MN 55101. E-mail address: [email protected] 0887-8994/$ - see front matter Ó 2014 Elsevier Inc. All rights reserved. http://dx.doi.org/10.1016/j.pediatrneurol.2014.06.006
algorithms and legally equated with death in most jurisdictions [regardless of the rationale for, or validity of, that equation].3” In cases such as that previously mentioned and the recent well publicized case of Jahi McMath, the family of a patient may not be compelled by “official diagnostic algorithms” and may not equate the patient’s brain death with death, creating conflicts with the proponents of the “official diagnostic algorithm.” In the Jahi McMath case, the “dead” patient was released to her family by the coroner for transfer to a new care facility, where, as of this writing, she continues to reside. With the emergence of intensive care, patients were recognized as having “death of the nervous system” with continued cardiac function.4 In 1963, Dr. Guy Alexandre performed the first organ transplant from a brain-dead heart-beating donor.5 In 1968, the Harvard report establish a paradigm for defining death by neurological criteria,6 and the Sydney declaration indicated that death “lies not in the preservation of isolated cells but in the fate of a person.7” The Harvard Report states, “Our primary purpose is to define irreversible coma as a new criterion for death.” It has been observed that the primary purpose “was not to determine if irreversible coma was a criterion for death but to see to it that it was established as a ‘new criterion for death.8’” By the turn of the 21st century, over 80 countries in the developed and developing world had accepted a brain-based determination of death, and most developed countries enacted this medical practice into public laws.9 The “official diagnostic algorithm” had prevailed. Brain death was equated with death because loss of the brain meant loss of the integration of the organism as a whole. Somatic death was to follow inevitably rapidly on brain death. However, this was simply untrue. Numerous integrative functions continuing in the brain-dead patient have been outlined.10,11 A series of “chronic brain death” patients were described.3 One such patient was chronically brain dead for 20 years.12 Indeed, brain-dead patients are, in many instances, relatively easy to maintain.3 Brain death was equated with death because brain death entails permanent absence of the capacity for consciousness. Both brain-dead and live patients may have hearts
G.N. Breningstall / Pediatric Neurology 51 (2014) 476e477
beating, good perfusion, functioning vital organs, somatic growth, and capacity for reproduction, but brain-dead patients have no capacity for consciousness.13 Indeed, these compelling similarities between brain-dead and live patients may motivate such headlines as, “Brain-dead Canadian woman dies after giving birth.” Adoption of the “higher brain” criterion of death would logically commit us to consider patients in a permanent vegetative state or anencephalic newborns as dead, although they have the capacity to breath on their own. “Euthanasia” on such patients would be allowed, because they are already dead. They could be buried or cremated as they are.13 “All genuine corpses can be legitimately cremated, for instance; but that in itself indicates how cautious we must be in reclassifying a patient as a corpse.14” Brainstem death necessitates neither loss of integration nor loss of consciousness. Brain death implies “irreversible cessation of all functions of the entire brain, including the brainstem.6” The “official diagnostic algorithm” assures us that all such functions have ceased, except for those that have not. Those that have not are deemed irrelevant.15 Such functions include hypothalamic endocrine function, cerebral electrical activity, cardiovascular stability, and environmental responsiveness, for example, blood pressure elevation to surgical incision.16 There are traditionally three reasons for the concept of brain death, two of which are no longer applicable.13 The diagnosis is no longer necessary to limit or terminate support and no longer necessary to deal with issues of resource allotment (withdrawal for benefit of the patient and withdrawal for benefit of society). Typically, decisions of this sort are currently made without recourse to notions of brain death. The remaining reason is to satisfy the dead donor rule for transplantation. Although brain death did not emerge to facilitate organ transplantation, facilitation of organ transplantation is what animates the current “official diagnostic algorithms.”4 If there were no need to obtain organs from other humans, “the raison d’etre of brain death will disappear.The concept will have died a natural death of its own.13” Some argue that transplantation issues could be addressed by principles of nonmaleficence and autonomy and the dead donor rule jettisoned.13,17 As in the case previously mentioned, family objections to the “official diagnostic algorithm” may be religious, with cessation of cardiac function necessary to define death. In several states, there is legal provision for such objection.18 There may, alternatively, simply be parental disbelief in the “official diagnostic algorithms.” In the Jahi McMath case, her mother expressed the notion that the patient is sleeping and will ultimately awaken. There are, of course reports of patients declared brain dead not only awakening but demonstrating gratifying recovery.19 The retort, of course, is that such brain-dead patients were not really brain dead and that the “official diagnostic algorithm” used in their case was deficient. It has been argued that, in the face of medical controversy regarding whether brain death is death, the family of the patient should have the prerogative to decide based on their religious and cultural views.20
477
Recent events such as the Jahi McMath case have indicated another function of the brain death rubric, that is, to force termination of care on unwilling parents or family. Because the patient is dead, any further supportive care is totally illogical. Indeed, by this logic, once the diagnosis is made, the ventilator should be immediately terminated without waiting for any family gathering or special final moment, just as one would not gather the family to be present at the death of an already dead patient. The notion of brain death as death certainly simplifies such matters, although akin to the first two traditional reasons for the brain death concept, perhaps hospital ethics committees instead of brain death could also force termination of care on unwilling parents or families, making the brain death construct unnecessary for this reason, as well.
References 1. Greer DM, Varelas PN, Haque S, Wijdicks EF. Variability of brain death determination guidelines in leading US neurologic institutions. Neurology. 2008;70:284-289. 2. Shappell CN, Frank JI, Husari K, Sanchez M, Goldenberg F, Ardelt A. Practice variability in brain death determination: a call to action. Neurology. 2013;81:2009-2014. 3. Shewmon DA. Chronic “brain death”: meta-analysis and conceptual consequences. Neurology. 1998;51:1538-1545. 4. Machado C, Korein J, Ferrer Y, Portela L, Garcia MC, Manero J. The concept of brain death did not evolve to benefit organ transplants. J Med Ethics. 2007;33:197-200. 5. Machado C. The first organ transplant from a brain-dead donor. Neurology. 2005;64:1938-1942. 6. A definition of irreversible coma. Report of the Ad Hoc Committee of the Harvard Medical School to Examine the Definition of Brain Death. JAMA. 1968;205:337-340. 7. Gilder SS. Twenty-second World Medical Assembly. Br Med J. 1968; 3:493-494. 8. Byrne PA, Weaver WF. “Brain death” is not death. In: Machado C, Shewmon DA, eds. Brain Death and Disorders of Consciousness. New York: Kluwer Academic Publishers; 2004:43-49. 9. Bernat JL. Controversies in defining and determining death in critical care. Nat Rev Neurol. 2013;9:164-173. 10. Shewmon DA. The brain and somatic integration: insights into the standard biological rationale for equating brain death with death. J Med Philos. 2001;26:457-478. 11. Joffe AR. Brain death is not death: a critique of the concept, criterion, and tests of brain death. Rev Neurosci. 2009;20:187-198. 12. Repertinger S, Fitzgibbons WP, Omojola MF, Brumback RA. Long survival following bacterial meningitis-associated brain destruction. J Child Neurol. 2006;21:591-595. 13. Truog RD. Brain death - too flawed to endure, too ingrained to abandon. J Law Med Ethics. 2007;35:273-281. 14. Appel JM. Defining death: when physicians and families differ. J Med Ethics. 2005;31:641-642. 15. Bernat JL. A defense of the whole-brain concept of death. Hastings Cent Rep. 1998;28:14-23. 16. Truog RD, Fackler JC. Rethinking brain death. Crit Care Med. 1992; 20:1705-1713. 17. Miller FG, Truog RD. Rethinking the ethics of vital organ donations. Hastings Cent Rep. 2008;38:38-46. 18. Fins JJ. Across the divide: religious objections to brain death. J Relig Health. 1995;34:33-39. 19. Man makes “miraculous” recovery from brain death after accident... www.catholicnewsagency.com/.../man_makes_miraculous_recovery_ from_ brain_death_after_accident/. 20. Veatch R. Opinion: Let parents decide if teen is dead - CNN.com www.cnn.com/2014/01/02/opinion/veatch-defining-death/.
Contents lists available at ScienceDirect
Pediatric Neurology journal homepage: www.elsevier.com/locate/pnu
Perspectives in Pediatric Neurology
Defining Death: When Physicians and Family Differ Galen N. Breningstall MD * Department of Pediatric Neurology, Gillette Children’s Specialty Healthcare, St. Paul, Minnesota
A 12-year-old boy was struck by a truck and then struck by a second vehicle. Resuscitation at the scene was of limited efficacy. In the emergency department, there was pulseless electrocardiogram activity for 20 minutes. An initial head computed tomography (CT) revealed diffuse edema. Cervical spine radiographic CT revealed a C1-C2 dislocation. He was believed to be brain dead from the time of his presentation. For religious reasons, the parents did not allow formal brain death testing. Indeed, it was forbidden to discuss brain death with the parents. Although an apnea test was never performed, at one point he had no spontaneous respiratory effort with a pCO2 >65. The patient had likely been quite hypoxic for 20-30 minutes after the injury. Repeated head CT scans revealed loss of cerebral architecture. Nasal discharge of blackish appearance was believed to be necrotic brain tissue, testing positive for myelin basic protein. An electroencephalogram was never performed because of parental refusal. Examiners commented that he had stereotypical spinal reflexes and that he “will move parts of his body at various points.” The patient had diabetes insipidus. C1-C2 dislocation itself is a hangman’s fracture. A cervical collar was used. The patient was discharged home after 2.5 months. He was ventilator dependent with a tracheostomy and gastrostomy. He remained at his home with extensive home health nursing until he sustained a cardiac death 13.5 months after his injuries. Numerous therapists who worked with him during that time aver that there was some, albeit quite limited, responsiveness of the patient. Although formal brain death declaration was never made, there seems little doubt he would have met some of the many criteria for brain death.1,2 Many criteria for brain death would imply that a patient might be brain dead in one institution but brain alive in another. Brain death is “a clinical neuropathologic state fulfilling official diagnostic
Article History: Received May 28, 2014; Accepted in final form June 13, 2014 * Communications should be addressed to: Dr. Breningstall; Department of Pediatric Neurology; Gillette Children’s Specialty Healthcare; 200 E University Ave; St. Paul, MN 55101. E-mail address: [email protected] 0887-8994/$ - see front matter Ó 2014 Elsevier Inc. All rights reserved. http://dx.doi.org/10.1016/j.pediatrneurol.2014.06.006
algorithms and legally equated with death in most jurisdictions [regardless of the rationale for, or validity of, that equation].3” In cases such as that previously mentioned and the recent well publicized case of Jahi McMath, the family of a patient may not be compelled by “official diagnostic algorithms” and may not equate the patient’s brain death with death, creating conflicts with the proponents of the “official diagnostic algorithm.” In the Jahi McMath case, the “dead” patient was released to her family by the coroner for transfer to a new care facility, where, as of this writing, she continues to reside. With the emergence of intensive care, patients were recognized as having “death of the nervous system” with continued cardiac function.4 In 1963, Dr. Guy Alexandre performed the first organ transplant from a brain-dead heart-beating donor.5 In 1968, the Harvard report establish a paradigm for defining death by neurological criteria,6 and the Sydney declaration indicated that death “lies not in the preservation of isolated cells but in the fate of a person.7” The Harvard Report states, “Our primary purpose is to define irreversible coma as a new criterion for death.” It has been observed that the primary purpose “was not to determine if irreversible coma was a criterion for death but to see to it that it was established as a ‘new criterion for death.8’” By the turn of the 21st century, over 80 countries in the developed and developing world had accepted a brain-based determination of death, and most developed countries enacted this medical practice into public laws.9 The “official diagnostic algorithm” had prevailed. Brain death was equated with death because loss of the brain meant loss of the integration of the organism as a whole. Somatic death was to follow inevitably rapidly on brain death. However, this was simply untrue. Numerous integrative functions continuing in the brain-dead patient have been outlined.10,11 A series of “chronic brain death” patients were described.3 One such patient was chronically brain dead for 20 years.12 Indeed, brain-dead patients are, in many instances, relatively easy to maintain.3 Brain death was equated with death because brain death entails permanent absence of the capacity for consciousness. Both brain-dead and live patients may have hearts
G.N. Breningstall / Pediatric Neurology 51 (2014) 476e477
beating, good perfusion, functioning vital organs, somatic growth, and capacity for reproduction, but brain-dead patients have no capacity for consciousness.13 Indeed, these compelling similarities between brain-dead and live patients may motivate such headlines as, “Brain-dead Canadian woman dies after giving birth.” Adoption of the “higher brain” criterion of death would logically commit us to consider patients in a permanent vegetative state or anencephalic newborns as dead, although they have the capacity to breath on their own. “Euthanasia” on such patients would be allowed, because they are already dead. They could be buried or cremated as they are.13 “All genuine corpses can be legitimately cremated, for instance; but that in itself indicates how cautious we must be in reclassifying a patient as a corpse.14” Brainstem death necessitates neither loss of integration nor loss of consciousness. Brain death implies “irreversible cessation of all functions of the entire brain, including the brainstem.6” The “official diagnostic algorithm” assures us that all such functions have ceased, except for those that have not. Those that have not are deemed irrelevant.15 Such functions include hypothalamic endocrine function, cerebral electrical activity, cardiovascular stability, and environmental responsiveness, for example, blood pressure elevation to surgical incision.16 There are traditionally three reasons for the concept of brain death, two of which are no longer applicable.13 The diagnosis is no longer necessary to limit or terminate support and no longer necessary to deal with issues of resource allotment (withdrawal for benefit of the patient and withdrawal for benefit of society). Typically, decisions of this sort are currently made without recourse to notions of brain death. The remaining reason is to satisfy the dead donor rule for transplantation. Although brain death did not emerge to facilitate organ transplantation, facilitation of organ transplantation is what animates the current “official diagnostic algorithms.”4 If there were no need to obtain organs from other humans, “the raison d’etre of brain death will disappear.The concept will have died a natural death of its own.13” Some argue that transplantation issues could be addressed by principles of nonmaleficence and autonomy and the dead donor rule jettisoned.13,17 As in the case previously mentioned, family objections to the “official diagnostic algorithm” may be religious, with cessation of cardiac function necessary to define death. In several states, there is legal provision for such objection.18 There may, alternatively, simply be parental disbelief in the “official diagnostic algorithms.” In the Jahi McMath case, her mother expressed the notion that the patient is sleeping and will ultimately awaken. There are, of course reports of patients declared brain dead not only awakening but demonstrating gratifying recovery.19 The retort, of course, is that such brain-dead patients were not really brain dead and that the “official diagnostic algorithm” used in their case was deficient. It has been argued that, in the face of medical controversy regarding whether brain death is death, the family of the patient should have the prerogative to decide based on their religious and cultural views.20
477
Recent events such as the Jahi McMath case have indicated another function of the brain death rubric, that is, to force termination of care on unwilling parents or family. Because the patient is dead, any further supportive care is totally illogical. Indeed, by this logic, once the diagnosis is made, the ventilator should be immediately terminated without waiting for any family gathering or special final moment, just as one would not gather the family to be present at the death of an already dead patient. The notion of brain death as death certainly simplifies such matters, although akin to the first two traditional reasons for the brain death concept, perhaps hospital ethics committees instead of brain death could also force termination of care on unwilling parents or families, making the brain death construct unnecessary for this reason, as well.
References 1. Greer DM, Varelas PN, Haque S, Wijdicks EF. Variability of brain death determination guidelines in leading US neurologic institutions. Neurology. 2008;70:284-289. 2. Shappell CN, Frank JI, Husari K, Sanchez M, Goldenberg F, Ardelt A. Practice variability in brain death determination: a call to action. Neurology. 2013;81:2009-2014. 3. Shewmon DA. Chronic “brain death”: meta-analysis and conceptual consequences. Neurology. 1998;51:1538-1545. 4. Machado C, Korein J, Ferrer Y, Portela L, Garcia MC, Manero J. The concept of brain death did not evolve to benefit organ transplants. J Med Ethics. 2007;33:197-200. 5. Machado C. The first organ transplant from a brain-dead donor. Neurology. 2005;64:1938-1942. 6. A definition of irreversible coma. Report of the Ad Hoc Committee of the Harvard Medical School to Examine the Definition of Brain Death. JAMA. 1968;205:337-340. 7. Gilder SS. Twenty-second World Medical Assembly. Br Med J. 1968; 3:493-494. 8. Byrne PA, Weaver WF. “Brain death” is not death. In: Machado C, Shewmon DA, eds. Brain Death and Disorders of Consciousness. New York: Kluwer Academic Publishers; 2004:43-49. 9. Bernat JL. Controversies in defining and determining death in critical care. Nat Rev Neurol. 2013;9:164-173. 10. Shewmon DA. The brain and somatic integration: insights into the standard biological rationale for equating brain death with death. J Med Philos. 2001;26:457-478. 11. Joffe AR. Brain death is not death: a critique of the concept, criterion, and tests of brain death. Rev Neurosci. 2009;20:187-198. 12. Repertinger S, Fitzgibbons WP, Omojola MF, Brumback RA. Long survival following bacterial meningitis-associated brain destruction. J Child Neurol. 2006;21:591-595. 13. Truog RD. Brain death - too flawed to endure, too ingrained to abandon. J Law Med Ethics. 2007;35:273-281. 14. Appel JM. Defining death: when physicians and families differ. J Med Ethics. 2005;31:641-642. 15. Bernat JL. A defense of the whole-brain concept of death. Hastings Cent Rep. 1998;28:14-23. 16. Truog RD, Fackler JC. Rethinking brain death. Crit Care Med. 1992; 20:1705-1713. 17. Miller FG, Truog RD. Rethinking the ethics of vital organ donations. Hastings Cent Rep. 2008;38:38-46. 18. Fins JJ. Across the divide: religious objections to brain death. J Relig Health. 1995;34:33-39. 19. Man makes “miraculous” recovery from brain death after accident... www.catholicnewsagency.com/.../man_makes_miraculous_recovery_ from_ brain_death_after_accident/. 20. Veatch R. Opinion: Let parents decide if teen is dead - CNN.com www.cnn.com/2014/01/02/opinion/veatch-defining-death/.
