Adolescent jahi McMath, 14, suffered brain damage after tonsillectomy. Bioethicists say she was not a patient because she was dead. Dr. Sanjay gupta says There's a difference between brain death as a biological phenomenon and as a legal status.
Adolescent jahi McMath, 14, suffered brain damage after tonsillectomy. Bioethicists say she was not a patient because she was dead. Dr. Sanjay gupta says There's a difference between brain death as a biological phenomenon and as a legal status.
Adolescent jahi McMath, 14, suffered brain damage after tonsillectomy. Bioethicists say she was not a patient because she was dead. Dr. Sanjay gupta says There's a difference between brain death as a biological phenomenon and as a legal status.
Copyright 2014 American Medical Association. All rights reserved.
The Meaning of Brain Death
A Different View The recent case of Jahi McMath, a teenager in Oak- land, California, was extensively publicized in the news media and led to prominent commentaries in medical journals on the meaning of brain death. 1,2 McMath is a 14-year-old adolescent who in December 2013 experi- enceddevastatingneurological damagefollowingcom- plications fromatonsillectomy. McMathmet criteriafor thediagnosis of braindeath. Shecontinues, however, to receivemechanical ventilation, tubefeedings, andsup- portive care at an undisclosed location, with her treat- ment financed by private funds, according to the most recent reports. Virtuallyall of thecommentaryontheMcMathcase has focused on howunreasonable it was for her family to insist on the continued use of life support. One bio- ethicist was quoted in USA Today as saying of the un- named medical facility where McMath was placed on a ventilator, What could they be thinking? Their think- ing must be disordered, froma medical point of view. There is a word for this: crazy. 3 Another bioethicist in- sistedthat continuedmechanical ventilationwas not life support and that the teenager was not a patient be- cause she was dead. The bioethicist was quoted as say- ing that the newphysicians are trying to ventilate and otherwise treat a corpse. She is going to start to decompose. 3 Inour view, theseandother commentators haveig- nored an important distinction between brain death as a biological phenomenon and as a legal status. 4,5 For morethan200years, theessential features of livingor- ganisms have been the subject of scientific investiga- tion. At present, we understand life to be defined in termsof thecapacityof organismstouseenergyinmain- taining a stable homeostatic internal environment and integratedfunctioning. 6 Whenanorganismlosesthisca- pacity, it has died. This definitionapplies across thebio- logical spectrum, fromsingle-celled organisms to com- plex plants and animals. The history of brain death reveals a persistent and continuedfailuretoconnect theconcept of braindeath withthis biological understandingof lifeanddeath. The 1968 report from the Ad Hoc Committee of the Har- vard Medical School to Examine the Definition of Brain Death proposed a definition of irreversible coma but provided no reason to consider patients in this condi- tion to be actually dead. 6 In 1981, the Presidents Commission for the Study of Ethical Problems inMedicineandBiomedical andBe- havioral Researchassertedthat brain-deadpatients did in fact fulfill this biological definition because they had lost the integrated functioning of the organism as a whole. 7(p33) Over thepast several decades, however, in- controvertibleevidenceshowsthat thisassertionisfalse. Many individuals with a diagnosis of brain death can maintainintegratedfunctioning for prolongedperiods, evenyears. Thesefunctions mayincludecirculation, di- gestion, excretionof wasteproducts, temperaturecon- trol, woundhealing, fightinginfections, growthandde- velopment, and gestating a fetus. 8 We now know that the integrated functioning of the organism as a whole is an emergent property of living organisms and is not dependent ona central organizer suchas thebrain. The fact that those with a diagnosis of brain death cannot breathe without being supported by a ventilator does not make them dead because this is no different from the situation of patients with high-level spinal cord in- jurywhoareunabletobreathespontaneouslybut surely are alive. The scientific evidence is clearin many cases, brain-dead patients are biologically alive. Neverthe- less, there is good reason to maintain the widely accepted policy stance that those with a diagnosis of brain death are legally dead. Prior to the development of intensive care medicine, when the mind ceased to function the body also ceased to function. However, technology such as the mechanical ventilator permits the body to continue vital functions even when the patients capacity for mental life has been irreversibly lost. The unfortunate individual in this condition is biologically alive but psychologically dead. With no mental life, there is no value in living. This makes it reasonable to treat a patient who is brain dead as legally dead; the patient is as good as dead. Maintain- ing life support can be of no value for a person in an irreversible coma; nor can such a person be harmed or wronged by procuring their organs for transplanta- tion, as long as valid consent has been obtained. Patients whohavecorrectlyreceiveda diagnosis of being in a persistent vegetative state also have perma- nently lost consciousness. At present, the clinical crite- ria for diagnosing the persistent vegetative state are much less reliable than those for brain death, however. Thus, it is not prudent to consider a patient in a persis- tent vegetative state as legally dead. Thelegal statusof braindeathhasanalogiestoother areas of the law, in which entities may be given a legal status that differs fromthenatureof theentity. Apromi- nent example is the legal doctrine that a corporation is a person in the eyes of the law. It may serve appropri- atelegal purposes inapplyingthelawtocorporations to treat themas persons, eventhoughthey are, of course, not persons. 6 Similarly, someindividuals aredeemedle- gally blind despite the fact that they retain limited eye- sight. Althoughthosewithadiagnosis of braindeathare not biologically dead, they are properly understood as legally dead. VIEWPOINT Robert D. Truog, MD Division of Critical Care Medicine, Boston Childrens Hospital, Boston, Massachusetts, and Division of Medical Ethics, Harvard Medical School, Boston, Massachusetts. FranklinG. Miller, PhD Department of Bioethics, National Institutes of Health, Bethesda, Maryland. Corresponding Author: Robert D. Truog, MD, Division of Critical Care Medicine, Boston Childrens Hospital, 300 Longwood Ave, Bader 621, Boston, MA 02115 (robert.truog @childrens.harvard .edu). Opinion jamainternalmedicine.com JAMAInternal Medicine August 2014 Volume 174, Number 8 1215 Copyright 2014 American Medical Association. All rights reserved. Downloaded From: http://archinte.jamanetwork.com/ by a Universita Torino User on 08/08/2014 Copyright 2014 American Medical Association. All rights reserved. Most families have no interest in continuing life support once they come tounderstandthat their lovedone is irreversibly uncon- scious. But howshould we respond to families like McMaths, who wish to maintain life support for a family member who is in an irre- versible coma and legally dead? To insist that such families are ob- viously mistaken or in denial is not helpful because from a biologi- cal perspectivetheymaywell becorrect that their lovedoneremains alive. Continuing life support in the intensive care unit of a hospital is not an appropriate use of this expensive and scarce resource be- cause such care can offer no medical benefit. As a matter of re- spect, however, for those fewfamilies who insist on continued life support, clinicians shouldbepreparedtofacilitatetransfer toalong- term care institution that is willing to maintain such patients. In- deed, NewJersey legally requires this approach. 6(p55) Who should pay for this continued treatment? On one hand, it seems reasonable to say that traditional third-party payers should not fundthecontinuedcareof patients deemedlegallydead. Onthe other hand, third-party payers routinely pay for continued life sup- port for patientsinapersistent vegetativestatepatientswho, if cor- rectlydiagnosed, arealsoirreversiblyunconscious withnohopefor a meaningful life. Evenif thedifferenceinlegal status is clear, it may seem ethically arbitrary to provide financial support in one situa- tion and not the other. Veatch 9 has therefore argued that all states shouldfollowNewJerseys example, which is to allowpatients and families to opt out of accepting brain death and to choose to have death determined by biological criteria. It might seemthat allowingpatients andfamilies tochoosetheir definition of death would have many practical problems, but in- deedit seemstohaveworkedwell inNewJersey. Familiesrarelywant to continue the biological existence of a patient who is irreversibly comatose. Respecting defensible minority views that do not im- posesubstantial burdens onothers is reasonableandinaccordwith the ideals of a liberal society. Facing the reality of brain death raises important questions about the role of physicians in helping to resolve complex issues in law, medicine, and public policy. We should provide the public with the best scientific data and thinking available and allow soci- ety through the democratic process to use those data in deter- mining the best policy. In our view, the medical profession, by insisting that brain death has a biological status even though this status is unfounded, has not upheld this obligation. Trust and the public interest would be best served by a more honest discussion about the meaning of brain death. We owe the public and our patients no less. ARTICLE INFORMATION Published Online: June 9, 2014. doi:10.1001/jamainternmed.2014.2272. Conflict of Interest Disclosures: None reported. Disclaimer: The opinions expressed are the views of the authors and do not necessarily reflect the policy of the National Institutes of Health, the Public Health Service, or the US Department of Health and Human Services. REFERENCES 1. Gostin LO. Legal and ethical responsibilities following brain death: the McMath and Muoz cases. JAMA. 2014;311(9):903-904. 2. Magnus DC, Wilfond BS, Caplan AL. Accepting brain death. N Engl J Med. 2014;370(10):891-894. 3. Szabo L. Ethicists criticize treatment of teen, Texas patient. USA Today. January 10, 2014. http: //www.usatoday.com/story/news/nation/2014/01 /09/ethicists-criticize-treatment-brain -deadpatients/4394173/. Accessed April 24, 2014. 4. Truog RD, Miller FG. Changing the conversation about brain death. AmJ Bioeth. In press. 5. Truog RD, Miller FG. Defining death: the importance of scientific candor and transparency. Intensive Care Med. In press. 6. Miller FG, Truog RD. Death, Dying, and Organ Transplantation. NewYork, NY: Oxford University Press; 2012. 7. Presidents Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. Defining Death: A Report on the Medical, Legal, and Ethical Issues in the Determination of Death. Washington, DC: Government Printing Office; 1981. 8. Shewmon DA. Chronic brain death: meta-analysis and conceptual consequences. Neurology. 1998;51(6):1538-1545. 9. Veatch R. Let parents decide if teen is dead. CNN.com. January 2, 2014. http://www.cnn.com /2014/01/02/opinion/veatch-defining-death. Accessed April 24, 2014. Opinion Viewpoint 1216 JAMAInternal Medicine August 2014 Volume 174, Number 8 jamainternalmedicine.com Copyright 2014 American Medical Association. All rights reserved. Downloaded From: http://archinte.jamanetwork.com/ by a Universita Torino User on 08/08/2014