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August 3, 2020

Is There a Right to Delay Determination of Death by Neurologic Criteria?

Author Affiliations
  • 1Division of Neurocritical Care, Departments of Neurology and Neurosurgery, New York University Langone Medical Center, New York
  • 2University of Virginia Schools of Law, Medicine, and Public Policy, Charlottesville
  • 3Mitchell Hamline School of Law, St Paul, Minnesota
JAMA Neurol. 2020;77(11):1347-1348. doi:10.1001/jamaneurol.2020.1815

In September 2019, physicians at a Michigan hospital declared Bobby Reyes, a 14-year-old boy, dead by neurologic criteria. Nearly 3 weeks later, they took Bobby off of organ support, despite his parents’ valiant attempts to prevent discontinuation of support by obtaining legal injunctions and seeking transfer to another facility. To provide other children who have severe brain injuries an extended opportunity to recover before pronouncement of death by neurologic criteria (DNC), Bobby’s parents are working with a Michigan legislator to create “Bobby’s Law.” The proposal, if enacted, would allow parents/legal guardians to delay apnea testing (AT) for an unspecified period, thereby preventing determination of DNC and discontinuation of organ support.1

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    3 Comments for this article
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    Consent to Diagnose Death of a Loved One: Ethical and Philosophical Distortions?
    Joao Massano, MD | Centro Hospitalar Univeristário de São João, Porto, Portugal
    This is an excellent paper by Dr Lewis. Thank you! Beyond the clinical complexities involved, brain death/death by neurological criteria (BD/DNC) is an emotionally burdensome process for both physicians and grieving families/significant others. I was appalled to learn about the Bobby Reyes case and the possibility under consideration of adding an additional layer of legal complexity to this already strenuous process, by providing grieving families with the final decision to carry out the apnea test (AT). I argue that this could be fundamentally wrong.

    My Western European ethical and philosophical view is that the massive burden of deciding to
    carry out the diagnostic procedures potentially leading to the diagnosis of BD/DNC, including AT, should not be laid on the grieving families or any other patient-related significant people. These are my 3 main arguments:

    1) Under these circumstances close patient relationships suffer acute emotional pain and strain. There was still no time to cope with the terrible event or with the heartbreaking information received from the healthcare team. Nonetheless, hope still lingers inside most people’s heads, often sharply. The deep emotional mesh causes unavoidable difficulties on cognitive processing and the ability to decide rationally. When a decision is eventually reached, people will live with it for the rest of their lives, and I wonder how much suffering they will endure from the faintest thought regarding the righteousness of their act, ultimately linked to an extreme outcome.

    2) Deciding on BD/DNC is often difficult, even for experienced physicians who devoted their lives to learn about the intricate biology of the body and nervous system, as well as the pathophysiology of brain injury and death. These experts have diagnosed, treated, and followed up countless patients. They have performed many diagnostic procedures leading to the diagnosis of BD/DNC, and they are fully aware of the technical knowledge and clinical skills needed, the ethical implications, the emotional impact. The “Bobby Law” would imply transferring a particularly strenuous decision, under extreme circumstances, to unprepared lay people, who never acquired knowledge on this issue, and probably never reflected on it before. Will they be able to absorb and process the information given to them on a very special moment of pain? I suspect that “informed” is hardly the correct adjective to qualify “consent” in this context.

    3) Going to basic ethics I find it very hard to accept that the “Bobby Law” or any other sort of legislation placing such extreme decisions on the hands of lay emotionally-attached families under acute emotional pain will ever work in the best interest of the patients. Instead, the focus should be placed on the deep and uniform preparation of healthcare professionals and systems for this sort of events. In this regard science and evidence-based medicine, intertwined with the solid matrix of biomedical ethics, are paramount. In this regard, the World Brain Death Project should be praised and cherished by all stakeholders involved - including society as a whole.
    CONFLICT OF INTEREST: None Reported
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    Between The Devil and The Deep Sea
    Arvind Joshi, MBBS MD, FCGP FAMS FICP. | Our Own Discussion Group; 602-C, Megh Apartments Ganesh Peth Lane Dadar West, Maharashtra State, Mumbai India, PIN 400028.
    The article has brought up an important issue which has broad emotional, ethical, human, rights, social, legal, political and economic implications.

    Some parents will be distressed to see their children hopelessly continuing in a vegetative state on artificial life support while others feel devastated by withdrawing the support.

    There have been cases where parents and kin have petitioned governments and courts of law to withdraw artificial life support but none could grant their wish.

    There was a situation where a person in protracted vegetative state had no kin to look after them but colleagues from work facilitated
    the hospital stay, daily care, and artificial life support. 

    Another consideration is whether prolonging the vegetative state of patients deprives other needy people of intensive care and artificial life support by delaying declaration of death.

    Questions will arise when not the family but the government or national health care system or public funds are paying for the artificial life supports. For how long?

    Also, delaying declaration of death may render the organs of the deceased useless for transplantation, whereas prompt declaration of death may evoke suspicion of undue haste in certification to favour people with vested interests in organ transplantation. Such allegations have been leveled against the hospitals and organ transplantation teams.

    But even certification of death may become difficult in routine situations as criteria to decide death may be subject to repeated medical, legal, political, and socially review.

    Arvind Joshi;
    MBBS, MD; FCGP, FAMS, FICP;
    Founder Convener and President,
    Our Own Discussion Group;
    602-C, Megh Apartments,
    Ganesh Peth Lane, Dadar West,
    Maharashtra State INDIA, PIN 400028.
    CONFLICT OF INTEREST: None Reported
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    Is There a Right to Delay Determination of Death by Neurologic Criteria?
    Calixto Machado, MD, PhF | Institute of Neurology and Neurosurgery
    I read with interest the paper by Lewis et al. about a legal injunction to offer children with severe brain injuries a lengthy opportunity to recuperate before declaration of brain death/death by neurologic criteria (BD/DNC). The so-called “Bobby’s Law”, if passed, “would allow parents/legal guardians to delay apnea testing (AT) for an unspecified period, thereby preventing determination of DNC and discontinuation of organ support” (1). The AT has been considered by most authors as the “condition sine qua non” for determining BD/DNC, and the most discriminant test for BD/DNC diagnosis, because it provides an essential sign of a definitive loss of brainstem function (2). The goalmouth of the AT is to permit the serum carbon dioxide to increase and pH to diminish to levels that would normally maximally stimulate the respiratory center in the brainstem. If there is no function in the respiratory center, the person will not make any respiratory effort in the setting of profound hypercarbia and acidosis (2-4).
    Rather than relying on elapsed time, a specific target value for the partial arterial pressure of carbon dioxide (PaCO2) should be aimed at being the maximum physiological stimulus for respiration (4). The World Brain Death Project has recently recommended that the minute ventilation must be adjusted to establish normocarbia (PaCO2 of 35-45 mm Hg [4.7-6.0 kPa]) prior to apnea testing, confirmed by arterial blood gas testing prior to apnea testing. Proper endpoint levels would be: pH less than 7.30 and PaCO2 of at least 60 mm Hg (8.0 kPa) (3).
    There are actual discussions about AT risks. Several authors have expressed their concern about the safety of this which might constrain the examiner to abort the test, thereby compromising BD/DNC diagnosis (5). Those who defend the AT safety emphasize that it is necessary to consider several pre-requisites. If the prerequisites are not met, in its place of performing an AT, an ancillary test should be performed to confirm BD/DNC diagnosis. This is the reason why the AT is always the last part of the clinical exam protocol (2-4).
    Most patients’ relatives don’t have enough scientific information to understand the complexity of the AT. Internet searching and advices and/or opinions from non-medical professionals, can prompt erroneous interpretations of AT safety, leading to law-suits in which families complained to perform the AT in BD determination (2). 
    I consider that to argue whether AT is safe or not, it is a medical discussion and not a legal issue.
    Therefore, I fully agree with Lewis et al. “allowing a negotiated standard for determination of death would be an ethically hazardous concession" (1).
    References
    1. Lewis A, Bonnie RJ, Pope T. Is There a Right to Delay Determination of Death by Neurologic Criteria? JAMA Neurol. 2020.
    2. Machado C, Perez J, Scherle C, Areu A, Pando A. Brain death diagnosis and apnea test safety. Ann Indian Acad Neurol. 2009;12(3):197-200.
    3. Greer DM, Shemie SD, Lewis A, et al. Determination of Brain Death/Death by Neurologic Criteria: The World Brain Death Project. JAMA. 2020.
    4. Wijdicks EF, Varelas PN, Gronseth GS, Greer DM. Evidence-based guideline update: determining brain death in adults: report of the Quality Standards Subcommittee of the American Academy of Neurology. Neurology. 2010;74(23):1911-1918.
    5. Coimbra CG. Implications of ischemic penumbra for the diagnosis of brain death. Brazilian Journal of Medical Biological Research. 1999;32(12):1479-1487.
    CONFLICT OF INTEREST: None Reported
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