PURPOSE OF REVIEW: The purpose of this review is to describe ethical and legal issues that arise in the management of patients with disorders of consciousness ranging from the minimally conscious state to the coma state, as well as brain death.
RECENT FINDINGS: The recent literature highlights dilemmas created by diagnostic and prognostic uncertainties in patients with disorders of consciousness. The discussion also reveals the challenges experienced by the disability community, which includes individuals with severe brain injury who are classified as having a disorder of consciousness. We review current guidelines for management of patients with disorders of consciousness including discussions around diagnosis, prognosis, consideration of neuropalliation, and decisions around life sustaining medical treatment.
SUMMARY: In the setting of uncertainty, this review describes the utility of applying a disability rights perspective and shared decision-making process to approach medical decision-making for patients with disorders of consciousness. We outline approaches to identifying surrogate decision makers, standards for decision-making and decision-making processes, specifically addressing the concept of futility as a less useful framework for making decisions. We also highlight special considerations for research, innovative and controversial care, brain death, organ donation, and child abuse and neglect.
Jahi McMath's story has been an important reference in medicine and ethics as the landscape of the understanding of death by neurologic criteria is shifting, with families actively questioning the once-firm criterion. Palliative care providers have a role in seeking understanding and collaborating with families and clinical teams to navigate the many challenges that arise when a medical team has determined that a child has died, and their parents disagree. In this case-based narrative discussion we consider the complexity of the family experience of brain death.
There remain serious doubts that "brain death," or death determined by neurological criteria, is equivalent to true death of the human person. This informal essay offers several distinctions that may help clarify doubts about this issue.
In the half-century history of clinical practice of diagnosing brain death, informed consent has seldom been considered until very recently. Like many other medical diagnoses and ordinary death pronouncements, it has been taken for granted for decades that brain death is diagnosed and death is declared without consideration of the patient’s advance directives or family’s wishes. This essay examines the pros and cons of using informed consent before the diagnosis of brain death from an ethical point of view. As shared decision-making in clinical practice became increasingly indispensable, respect for the patients’ autonomous wishes regarding how to end their lives has a significant role in deciding how death is diagnosed. Brain death, as a fully technologically controlled death, may require a different ethical framework from the old one for traditional cardiac death. With emerging and proliferating options in end-of-life care for those who suffer from catastrophic brain injury, the traditional reasoning that ‘death gives no choice, hence no consent’ requires another examination. Patients facing imminent brain death now have options other than undergoing the diagnostic workup for brain death, such as donation after circulatory death and withdrawal of life-sustaining treatment with maximum comfort measures for death with dignity. Nevertheless, just as in the debate over opt-in versus opt-out organ donation policies, informed consent before the diagnosis of brain death faces fierce opposition from consequentialists urging the expansion of the donor pool. This essay examines these objections and provides constructive replies along with a proposal to accommodate this morally required consent.
Although death by neurologic criteria (brain death) is legally recognized throughout the United States, state laws and clinical practice vary concerning three key issues: (1) the medical standards used to determine death by neurologic criteria, (2) management of family objections before determination of death by neurologic criteria, and (3) management of religious objections to declaration of death by neurologic criteria. The American Academy of Neurology and other medical stakeholder organizations involved in the determination of death by neurologic criteria have undertaken concerted action to address variation in clinical practice in order to ensure the integrity of brain death determination. To complement this effort, state policymakers must revise legislation on the use of neurologic criteria to declare death. We review the legal history and current laws regarding neurologic criteria to declare death and offer proposed revisions to the Uniform Determination of Death Act (UDDA) and the rationale for these recommendations.
The diagnosis of brain death (BD) is legally and medically accepted. Recently, several high-profile cases have led to discussions regarding the integrity of current criteria, and many physiologic problems have been identified to support the necessity for their reevaluation. These include a global variability of the criteria, the suggestion of a clinical “hierarchy,” and the resultant approximation of BD. Further ambiguity has been exposed through case reports of reversible BD, and an inconsistent understanding from physicians who are viewed as experts in this domain. Meeting BD criteria clearly does not equate to a physiologic “death” of the brain, and a greater community perspective should be considered as the dialogue moves forward.
In 2010, the American Academy of Neurology (AAN) published updated official guidelines for specific practices involved in the determination of death by neurologic criteria for adult patients, otherwise known as brain death. Most states, however, do not have laws mandating the standard adoption of the AAN guidelines. The responsibilities for creating and implementing brain death determination policies thus falls on individual hospitals. As a result, significant variability in practice exists between hospitals and even between providers. This review highlights the ways in which and the extent to which adult brain death determination varies across the US, while also making the case that such persistent levels of heterogeneity call for improvements in standardizing training in brain death determination.
This special issue contents : a report of physicians’ beliefs about physician-assisted suicide: a national study ; respecting autonomy and promoting the patient’s good in the setting of serious terminal and concurrent mental illness ; after-death functions of cell death; selective neuronal death in neurodegenerative diseases: the ongoing mystery ; practice variability in determination of death by neurologic criteria for adult patients ; mortal responsibilities: bioethics and medical-assisted dying ; anticipation, accompaniment, and a good death in perinatal care ; pros and cons of physician aid in dying ; brain death criteria: medical dogma and outliers ; dying well-informed: the need for better clinical education surrounding facilitating end-of-life conversations ; looking back at withdrawal of life-support law and policy to see what lies ahead for medical aid-in-dying.
Ce numéro comprend les articles suivants : brain death at fifty: exploring consensus, controversy, and contexts ; would a reasonable person now accept the 1968 Harvard brain death report? A short history of brain death ; a path not taken: beecher, brain death, and the aims of medicine ; Beecher dépassé: fifty years of determining death, legally ; a conceptual justification for brain death ; brain death: a conclusion in search of a justification ; conceptual issues in DCDD donor death determination ; DCDD ddonors are not dead ; uncontrolled DCD: when should we stop trying to save the patient and focus on saving the organs? ; a defense of the dead donor rule ; the dead donor rule as policy indoctrination ; the public's right to accurate and transparent information about brain death and organ transplantation ; brain death and the law: hard cases and legal challenges ; rethinking brain death as a legal fiction: is the terminology the problem? ; respecting choice in definitions of death ; imposing death: religious witness on brain death ; death: an evolving, normative concept ; lessons from the case of Jahi McMath ; the case of Jahi McMath: a neurologist's view ; revisiting death: implicit bias and the case of Jahi MMath.
The organ transplantation enterprise is morally flawed. "Brain-dead" donors are the primary source of solid vital organs, and the transplantation enterprise emphasizes that such donors are dead before organs are removed-or in other words that the dead donor rule is followed. However, individuals meeting standard diagnostic criteria for brain death-unresponsiveness, brainstem areflexia, and apnea-are still living, from a physiological perspective. Therefore, removing vital organs from a heart-beating, mechanically ventilated donor is lethal. But neither donors nor surrogates nor the public in general are typically informed of this obviously relevant information. Therefore, donors or surrogates do not provide valid consent for a lethal medical procedure. This is a serious moral failing on the part of the transplant community. To address this concern, I advocate for accurate and fully transparent communication of information to the public to allow for an informed civic dialogue about the ethics and legality of lethal organ procurement. Furthermore, I advocate that systems be put in place by the transplant community to allow for valid consent for lethal organ procurement.
Brain death, or the determination of death by neurological criteria, has been described as a legal fiction. Legal fictions are devices by which the law treats two analogous things (in this case, biological death and brain death) in the same way so that the law developed for one can also cover the other. Some scholars argue that brain death should be understood as a fiction for two reasons: the way brain death is determined does not actually satisfy legal criteria requiring the permanent cessation of all brain function, and brain death is not consistent with the biological conception of death as involving the irreversible cessation of the functioning of an organism as a whole. Critics counter that the idea that brain death is a legal fiction is deceptive and undemocratic. I will argue that diagnosing brain death as a hidden legal fiction is a helpful way to understand its historical development and current status. For the legal-fictions approach to be ethically justifiable, however, the fact that brain death is a legal fiction not aligned with the standard biological conception of death must be acknowledged and made transparent.
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.
When The Ad Hoc Committee of Harvard Medical School to Examine the Definition of Brain Death began meeting in 1967, I was a graduate student, with committee member Ralph Potter and committee chair Henry Beecher as my mentors. The question of when to stop life support on a severely compromised patient was not clearly differentiated from the question of when someone was dead. A serious clinical problem arose when physicians realized that a patient's condition was hopeless but life support perpetuated body function. Thus, the committee stated that its first purpose was to deal with the burdens on patients and families as well as on hospitals and on patients needing hospital beds occupied by comatose patients. They intuited the strategy of "defining" these patients as dead, thus legitimating treatment stoppage. They noted that this would also serve a second purpose. Although the dead donor rule had not yet been clearly articulated, they claimed that defining patients as dead would also address controversy over obtaining organs for transplant. My mentors' discussions related to my interest in the intersection between questions primarily of medical fact (When has a human brain irreversibly ceased functioning?) and nonmedical questions of social policy (Should we treat individuals with dead brains and beating hearts as dead humans?). It quickly became clear that most committee members did not appreciate the interplay of these questions.
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.
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.
At its inception, "brain death" was proposed not as a coherent concept but as a useful one. The 1968 Ad Hoc Committee of the Harvard Medical School to Examine the Definition of Brain Death gave no reason that "irreversible coma" should be death itself, but simply asserted that the time had come for it to be declared so. Subsequent writings by chairman Henry Beecher made clear that, to him at least, death was essentially a social construct, and society could define it however it pleased. The first widely endorsed attempt at a philosophical justification appeared thirteen years later, with a report from the President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research and a seminal paper by James Bernat, Charles Culver, and Bernard Gert, which introduced the insightful tripartite scheme of concept, criterion, and tests for death. Their paper proposed that the correct concept of death is the "permanent cessation of functioning of the organism as a whole," which tenuously remains the mainstream concept to this day. In this essay, I focus on this mainstream concept, arguing that equating brain death with death involves several levels of incoherence: between concept and criterion, between criterion and tests, between tests and concept, and between all of these and actual brain death praxis.
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.
Une mère témoigne de la décision qui a été prise de faire don des organes de sa fille Alice, diagnostiquée d'une tumeur au cerveau en très bas âge mais qui a pu vivre jusqu'à ce jour où elle a été victime d'un fatal accident d'équitation. C'est en tout six vies qui ont pu être sauvées grâce à ce choix.
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.