From the start, I followed the case of Jahi McMath with great interest. In December 2013, she clearly fulfilled the diagnostic criteria for brain death. As a neurologist with a special interest in chronic brain death, I was not surprised that, after she was flown to New Jersey, where she became statutorily resurrected and was treated as a comatose patient, Jahi's condition quickly improved. In 2014, her family reported that she sometimes responded to simple motor commands. I shared the (...) general skepticism regarding these reports, assuming that the family was in denial and was misinterpreting spinal myoclonus (a rapid, involuntary twitch generated by the spinal cord) as volitional. The family had noticed that when Jahi's heart rate was above eighty beats per minute, she was more likely to respond, as though the heart rate reflected some sort of inner level of arousal. So they began to make video recordings. I have been privileged to be entrusted with copies of these recordings, forty‐eight of which proved suitable for assessing alleged responsiveness. All have been certified by a forensic video expert as unaltered. The first thing that struck me was that the great majority of the alleged responses were not spinal myoclonus. In fact, they did not resemble any type of spontaneous, involuntary movement described in patients paralyzed from high spinal cord lesions. (shrink)

For nearly five years, bioethicists and neurologists debated whether Jahi McMath, an African American teenager, was alive or dead. While Jahi's condition provides a compelling study for analyzing brain death, circumscribing her life status to a question of brain death fails to acknowledge and respond to a chronic, if uncomfortable, bioethics problem in American health care—namely, racial bias and unequal treatment, both real and perceived. Bioethicists should examine the underlying, arguably broader social implications of what Jahi's medical treatment and (...) experience represented. On any given day, disparities in the quality of health care and health outcomes for people of color in comparison to whites are evidenced in American hospitals and clinics. These disparities are not entirely explained by differences in patient education, insurance status, employment, income, expressed preference for treatments, and severity of disease. Instead, research indicates that, even for African Americans able to gain access to health care services and navigate institutional nuances, disparities persist across a broad range of services, including diagnostic screening and general medical care, mental health diagnosis and treatment, pain management, HIV‐related care, and treatments for cancer, heart disease, diabetes, and kidney disease. (shrink)

Jahi McMath's case has raised challenging uncertainties about one of the most profound existential questions that we can ask: how do we know whether someone is alive or dead? The case is striking in at least two ways. First, how can it be that a person diagnosed as dead by qualified physicians continued to live, at least in a biological sense, more than four years after a death certificate was issued? Second, the diagnosis of brain death has been considered (...) irreversible; in fact, there has never been a case of a person correctly diagnosed as brain‐dead who improved to the point that the person no longer fulfilled the diagnostic criteria. If the neurologist Alan Shewmon is correct that, prior to her cardiac arrest in June 2018, McMath no longer met the criteria for brain death and was actually in a minimally conscious state, this case could have momentous implications for how we think about this diagnosis going forward. In this essay, I will offer a hypothesis that could, perhaps, explain both these aspects of the case. The hypothesis is based on differences in how we distinguish between biological and legal categories. The law tends to prefer to draw bright‐line distinctions between categories, whereas biological categories tend to fall along a spectrum, without sharp distinctions. (shrink)

Given the long‐standing controversy about whether the brain‐dead should be considered alive in an irreversible coma or dead despite displaying apparent signs of life, the ethical and policy issues posed when family members insist on continued treatment are not as simple as commentators have claimed. In this article, we consider the kind of policy that should be adopted to manage a family's insistence that their brain‐dead loved one continues to receive supportive care. We argue that while it would be ethically (...) inappropriate to continue to devote scarce acute care resources to such patients in a hospital setting, it may not be ethically inappropriate for patients to receive these resources in certain other settings. Thus, if a family insists on continuing to care for their brain‐dead loved at their home, we should not, from a policy perspective, interfere with the family's wishes. We also argue that healthcare professionals should make some effort to facilitate the transfer of brain‐dead patients to these other settings when families insist on continued treatment despite being informed about the lack of any potential for recovery of consciousness. Our arguments are strengthened by the fact that patients in a persistent vegetative state, who, when correctly diagnosed, also have no potential for recovery of consciousness, are routinely transferred from hospitals to nursing homes or long‐term care facilities where they continue to be ventilated, tube fed and to receive other supportive care. We also briefly explore the question of who should be responsible for the costs of such treatment at the long‐term care facility. (shrink)

The publicity surrounding the recent McMath and Muñoz cases has rekindled public interest in brain death: the familiar term for human death determination by showing the irreversible cessation of clinical brain functions. The concept of brain death was developed decades ago to permit withdrawal of therapy in hopeless cases and to permit organ donation. It has become widely established medical practice, and laws permit it in all U.S. jurisdictions. Brain death has a biophilosophical justification as a standard for determining (...) human death but remains poorly understood by the public and by health professionals. The current controversies over brain death are largely restricted to the academy, but some practitioners express ambivalence over whether brain death is equivalent to human death. Brain death remains an accepted and sound concept, but more work is necessary to establish its biophilosophical justification and to educate health professionals and the public. (shrink)

Since its inception in 1968, the concept of whole-brain death has been contentious, and four decades on, controversy concerning the validity and coherence of whole-brain death continues unabated. Although whole-brain death is legally recognized and medically entrenched in the United States and elsewhere, there is reasonable disagreement among physicians, philosophers, and the public concerning whether brain death is really equivalent to death as it has been traditionally understood. A handful of states have acknowledged this plurality of viewpoints and enacted “conscience (...) clauses” that require “reasonable accommodation” of religious and moral objections to the determination of death by neurological criteria. This paper argues for the universal adoption of “reasonable accommodation” policies using the New Jersey statute as a model, in light of both the ongoing controversy and the recent case of Jahi McMath, a child whose family raised religious objections to a declaration of brain death. Public policies that accommodate reasonable, divergent viewpoints concerning death provide a practical and compassionate way to resolve those conflicts that are the most urgent, painful, and difficult to reconcile. (shrink)

Over the past 40 years, scholars and practitioners of public relations have often cast public relations workers in the role of the public relations-person-as-corporate-conscience. This work, however, maintains that this construct is so problematic that invoking it is of negligible use in addressing ethical issues that emerge during a crisis. In fact, a complex crisis, such as the Jahi McMath “brain death” case at Children’s Hospital Oakland, demonstrates the need to abandon the PRPaCC construct to better engage affected stakeholders, (...) including “outsiders” to the organization, who often determine whether an organization is facing a crisis. Through an examination of both the concept of the PRPaCC and the McMath crisis, this work makes the case for moving beyond the PRPaCC construct in favor of a more modest role for the public relations person: facilitating widespread ethical deliberation and discussion throughout an organization, potentially helping the organization alleviate concerns that contribute to crises. (shrink)

For more than thirty years, in most of the world, the irreversible cessation of all brain function, more commonly known as brain death, has been accepted as a criterion of death. Yet the philosophical basis on which this understanding of death was originally grounded has been undermined by the long-term maintenance of bodily functions in brain dead patients. More recently, the American case of Jahi McMath has cast doubt on whether the standard tests for diagnosing brain death exclude a (...) condition in which the patient is not dead, but in a minimally conscious state. I argue that the evidence now clearly shows that brain death is not equivalent to the death of the human organism. We therefore face a choice: either we stop removing vital organs from brain dead patients, or we accept that it is not wrong to kill an innocent human who has irreversibly lost consciousness. (shrink)

The determination of death by neurological criteria—“brain death”—has long been legally established as death in all U.S. jurisdictions. Moreover, the consequences of determining brain death have been clear. Except for organ donation and in a few rare and narrow cases, clinicians withdraw physiological support shortly after determining brain death. Until recently, there has been almost zero action in U.S. legislatures, courts, or agencies either to eliminate or to change the legal status of brain death. Despite ongoing academic debates, the law (...) concerning brain death has remained stable for decades. However, since the Jahi McMath case in 2013, this legal certainty has been increasingly challenged. Over the past five years, more families have been emboldened to translate their concerns into legal claims challenging traditional brain death rules. While novel, these claims are not frivolous. Therefore, it is important to understand them so that we can address them most effectively. (shrink)

The determination of death by neurological criteria remains controversial scientifically, culturally, and legally, worldwide. In the United Kingdom, although the determination of death by neurological criteria is not legally codified, the Code of Practice of the Academy of Medical Royal Colleges is customarily used for neurological death determination and treatment withdrawal. Unlike some states in the US, however, there are no provisions under the law requiring accommodation of and respect for residents' religious rights and commitments when secular conceptions of death (...) based on medical codes and practices conflict with a traditional concept well-grounded in religious and cultural values and practices. In this article, we analyse the medical, ethical, and legal issues that were generated by the recent judgement of the High Court of England and Wales in Re: A [2015] EWHC 443. Mechanical ventilation was withdrawn in this case despite parental religious objection to a determination of death based on the code of practice. We outline contemporary evidence that has refuted the reliability of tests of brainstem function to ascertain the two conjunctive clinical criteria for the determination of death that are stipulated in the code of practice: irreversible loss of capacity for consciousness and somatic integration of bodily biological functions. We argue that: the tests of brainstem function were not properly undertaken in this case; the two conjunctive clinical criteria set forth in the code of practice cannot be reliably confirmed by these tests in any event; and absent authentication of the clinical criteria of death, the code of practice wrongly invokes a secular definition of death based on the loss of personhood. Consequently, the moral obligation of a pluralistic society to honor and respect diverse religious convictions to the greatest extent possible is being violated. Re A is contrasted with the US case of Jahi McMath in which the court accommodated parental religious objection to the determination of neurological death codified in the Uniform Determination of Death Act. We conclude that the legal system in the United Kingdom should not favour a secular definition of death over a definition of death that is respectful of religious values about the inviolability and sanctity of life. We recommend the legal recognition of religious accommodation in death determination to facilitate cultural sensitivity and compassionate care to patients and families in a pluralistic society. (shrink)

The determination of death by neurological criteria remains controversial scientifically, culturally, and legally, worldwide. In the United Kingdom, although the determination of death by neurological criteria is not legally codified, the Code of Practice of the Academy of Medical Royal Colleges is customarily used for neurological death determination and treatment withdrawal. Unlike some states in the US, however, there are no provisions under the law requiring accommodation of and respect for residents' religious rights and commitments when secular conceptions of death (...) based on medical codes and practices conflict with a traditional concept well-grounded in religious and cultural values and practices. In this article, we analyse the medical, ethical, and legal issues that were generated by the recent judgement of the High Court of England and Wales in Re: A [2015] EWHC 443. Mechanical ventilation was withdrawn in this case despite parental religious objection to a determination of death based on the code of practice. We outline contemporary evidence that has refuted the reliability of tests of brainstem function to ascertain the two conjunctive clinical criteria for the determination of death that are stipulated in the code of practice: irreversible loss of capacity for consciousness and somatic integration of bodily biological functions. We argue that: the tests of brainstem function were not properly undertaken in this case; the two conjunctive clinical criteria set forth in the code of practice cannot be reliably confirmed by these tests in any event; and absent authentication of the clinical criteria of death, the code of practice wrongly invokes a secular definition of death based on the loss of personhood. Consequently, the moral obligation of a pluralistic society to honor and respect diverse religious convictions to the greatest extent possible is being violated. Re A is contrasted with the US case of Jahi McMath in which the court accommodated parental religious objection to the determination of neurological death codified in the Uniform Determination of Death Act. We conclude that the legal system in the United Kingdom should not favour a secular definition of death over a definition of death that is respectful of religious values about the inviolability and sanctity of life. We recommend the legal recognition of religious accommodation in death determination to facilitate cultural sensitivity and compassionate care to patients and families in a pluralistic society. (shrink)

This paper examines the relationship between medical technology and liminal states of “undeath” as presented in “The Facts in the Case of M. Valdemar” and the real-life case of Jahi McMath, who was maintained on life support for over four years following a diagnosis of brain death. Through this juxtaposition, “Valdemar” comes to function as a modern fable, an uneasy herald of medical technology’s potential to create liminal states between life and death. The ability to transgress these boundaries bears (...) a cost, however: both Valdemar and Jahi McMath lose the autonomy to direct their respective narratives. Yet, their utterances “from beyond the grave” highlight the precarious nature of their position and the ethical concerns therein. Poe’s literary performance of “undeath” therefore serves to caution real-life cases in which life support is used to sustain an individual reported to be brain-dead. Such application of life-sustaining technology complicates the fundamental binary of life/death, allowing its subjects to resist textual closure. Even as Poe’s work represents an imaginative interrogation of the scientific enterprise, this nineteenth-century story holds a mirror to contemporary medical practice, inviting a reconsideration of the ethics, language, and power relations surrounding the fraught relationship between death and medical technology. (shrink)

There is perhaps no more important value than fundamental human equality. And yet, despite large percentages of people affirming the value, the resources available to explain and defend the basis for such equality are few and far between. In his newest book, Charles Camosy provides a thoughtful defense of human dignity. Telling personal stories like those of Jahi McMath, Terri Schiavo, and Alfie Evans, Camosy, a noted bioethicist and theologian, uses an engaging style to show how the influence of (...) secularized medicine is undermining fundamental human equality in the broader culture. And in a disturbing final chapter, Camosy sounds the alarm about the next population to fall if we stay on our current trajectory: dozens of millions of human beings with dementia. Heeding this alarm, Camosy argues, means doing two things. First, making urgent and genuine attempts to dialogue with a secularized culture which cannot see how it is undermining one of its most foundational values. Second, religious communities which hold the Imago Dei sacred must mobilize their existing institutions (and create new ones) to care for a new set of human beings our throwaway culture may deem nonpersons. (shrink)

Every year, people make decisions based on trust in the certainty of diagnoses of brain death. These decisions range from signing an organ donation card to withdrawing life support from a loved one. Two recent developments have revived concerns about medical standards for determining brain death. One is a recent study on variability in brain death policies in the United States; the other is the filing of a federal lawsuit to rescind the death certificate of Jahi McMath, a teenager (...) who appears to have survived a 2013 declaration of brain death. The author examines these developments and asks whether trust in the certainty of brain-death determinations is currently warranted. (shrink)

In many ways, grief is thought to be outside the realm of bioethics and clinical ethics, and grieving patients or family members may be passed off to grief counselors or therapists. Yet grief can play a particularly poignant role in the ethical encounter, especially in cases of brain death, where the line between life and death has been blurred. Although brain death is legally and medically recognized as death in the United States and elsewhere, the concept has been contentious since (...) its inception in 1968. Yet in most cases, families are not allowed to reject the determination of brain death. Apart from religious exemptions, families have no recourse to reject this controversial determination of death. This paper explores the role of grief in brain death determinations and argues that bioethics has failed to address the complexity of grief in determinations of brain death. Grief ought to have epistemological weight in brain death determinations because of the contested nature of the diagnosis and the unique ways in which grief informs the situation. Thus, I argue that, in some rare cases, reasonable accommodation policies should be expanded to allow for refusals of brain death determinations based on the emotional and moral force of grief. By drawing on ethnographic accounts of grief in other cultures, I problematize the current procedural and linear understandings of grief in brain death determinations, and I conclude by offering a new way in which to understand the case of Jahi McMath. (shrink)

In many ways, grief is thought to be outside the realm of bioethics and clinical ethics, and grieving patients or family members may be passed off to grief counselors or therapists. Yet grief can play a particularly poignant role in the ethical encounter, especially in cases of brain death, where the line between life and death has been blurred. Although brain death is legally and medically recognized as death in the United States and elsewhere, the concept has been contentious since (...) its inception in 1968. Yet in most cases, families are not allowed to reject the determination of brain death. Apart from religious exemptions, families have no recourse to reject this controversial determination of death. This paper explores the role of grief in brain death determinations and argues that bioethics has failed to address the complexity of grief in determinations of brain death. Grief ought to have epistemological weight in brain death determinations because of the contested nature of the diagnosis and the unique ways in which grief informs the situation. Thus, I argue that, in some rare cases, reasonable accommodation policies should be expanded to allow for refusals of brain death determinations based on the emotional and moral force of grief. By drawing on ethnographic accounts of grief in other cultures, I problematize the current procedural and linear understandings of grief in brain death determinations, and I conclude by offering a new way in which to understand the case of Jahi McMath. (shrink)

In many ways, grief is thought to be outside the realm of bioethics and clinical ethics, and grieving patients or family members may be passed off to grief counselors or therapists. Yet grief can play a particularly poignant role in the ethical encounter, especially in cases of brain death, where the line between life and death has been blurred. Although brain death is legally and medically recognized as death in the United States and elsewhere, the concept has been contentious since (...) its inception in 1968. Yet in most cases, families are not allowed to reject the determination of brain death. Apart from religious exemptions, families have no recourse to reject this controversial determination of death. This paper explores the role of grief in brain death determinations and argues that bioethics has failed to address the complexity of grief in determinations of brain death. Grief ought to have epistemological weight in brain death determinations because of the contested nature of the diagnosis and the unique ways in which grief informs the situation. Thus, I argue that, in some rare cases, reasonable accommodation policies should be expanded to allow for refusals of brain death determinations based on the emotional and moral force of grief. By drawing on ethnographic accounts of grief in other cultures, I problematize the current procedural and linear understandings of grief in brain death determinations, and I conclude by offering a new way in which to understand the case of Jahi McMath. (shrink)

Given the long-standing controversy about whether the brain-dead should be considered alive in an irreversible coma or dead despite displaying apparent signs of life, the ethical and policy issues posed when family members insist on continued treatment are not as simple as commentators have claimed. In this article, we consider the kind of policy that should be adopted to manage a family's insistence that their brain-dead loved one continues to receive supportive care. We argue that while it would be ethically (...) inappropriate to continue to devote scarce acute care resources to such patients in a hospital setting, it may not be ethically inappropriate for patients to receive these resources in certain other settings. Thus, if a family insists on continuing to care for their brain-dead loved at their home, we should not, from a policy perspective, interfere with the family's wishes. We also argue that healthcare professionals should make some effort to facilitate the transfer of brain-dead patients to these other settings when families insist on continued treatment despite being informed about the lack of any potential for recovery of consciousness. Our arguments are strengthened by the fact that patients in a persistent vegetative state, who, when correctly diagnosed, also have no potential for recovery of consciousness, are routinely transferred from hospitals to nursing homes or long-term care facilities where they continue to be ventilated, tube fed and to receive other supportive care. We also briefly explore the question of who should be responsible for the costs of such treatment at the long-term care facility. (shrink)