Ravelingien et al1 argue that we should recategorise people in a permanent vegetative state as dead. Although the dilemma they describe is very real, their solution will not work. Other respondents to this paper have advanced several powerful arguments against the attempt to describe patients in a PVS as dead. Fortunately, the original argument contains sufficient resources for developing an alternative solution to this dilemma without having to radically change the current legal or social status of patients (...) in a PVS. In fact, patients in a PVS may be enrolled in xenotransplantation experiments, provided that their prior informed consent has been sought.The motivation for the original paper was to resolve an apparently intractable ethical conflict. On the one hand, there are powerful ethical and medical reasons for proceeding with research into the transplantation of non-human organs into human patients, whereas on the other, there are equally powerful ethical reasons for blocking whole-organ transplant experiments. These reasons are unusual in that special problems with xenotransplantation will block experiments that are permitted in other cases. In particular, the unquantifiable risk of a pandemic triggered by diseases such as porcine endogenous retrovirus crossing the species barrier will either block the research or expose subjects to the risk of indefinite quarantine . The authors also argue that the restrictions placed on transplant recipients and the possibility of long-term and intrusive monitoring, restrictions on sexual contacts and reproduction, and possible confinement represent excessive and ethically unjustifiable burdens. Over time, the recipients may wish to withdraw their consent, but the risks to public health would prevent them from doing so, thereby violating the basic principle that subjects of scientific and medical experiments should be able to revise or withdraw consent . …. (shrink)

Some brain injured patients are left in a permanent vegetative state, i.e., they have irreversibly lost their capacity for consciousness but retained some autonomic physiological functions, such as breathing unaided. Having discussed the controversial nature of the permanent vegetative state as a diagnostic category, we turn to the question of the patients’ ontological status. Are the permanently vegetative alive, dead, or in some other state? We present empirical data from interviews with relatives (...) of patients, and with experts, to support the view that the ontological state of permanently vegetative patients is unclear: such patients are neither straightforwardly alive nor simply dead. Having defended this view from counter-arguments we turn to the practical question as to how these patients ought to be treated. Some relatives and experts believe it is right for patients to be shifted from their currently unclear ontological state to that of being straightforwardly dead, but many are concerned or even horrified by the only legally sanctioned method guaranteed to achieve this, namely withdrawal of clinically assisted nutrition and hydration. A way of addressing this distress would be to allow active euthanasia for these patients. This is highly controversial; but we argue that standard objections to allowing active euthanasia for this particular class of permanently vegetative patients are weakened by these patients’ distinctive ontological status. (shrink)

In the United States, the decision of whether to withdraw or continue to provide artificial nutrition and hydration (ANH) for patients in a permanent vegetative state (PVS) is placed largely in the hands of surrogate decision-makers, such as spouses and immediate family members. This practice would seem to be consistent with a strong national emphasis on autonomy and patient-centered healthcare. When there is ambiguity as to the patient's advanced wishes, the presumption has been that decisions should weigh (...) in favor of maintaining life, and therefore, that it is the withdrawal rather than the continuation of ANH that requires particular justification. I will argue that this default position should be reversed. Instead, I will argue that the burden of justification lies with those who would continue artificial nutrition and hydration (ANH), and in the absence of knowledge as to the patient's advanced wishes, it is better to discontinue ANH. In particular, I will argue that among patients in PVS, there is not a compelling interest in being kept alive; that in general, we commit a worse violation of autonomy by continuing ANH when the patient's wishes are unknown; and that more likely than not, the maintenance of ANH as a bridge to a theoretical future time of recovery goes against the best interests of the patient. (shrink)

Withdrawal of artificially delivered nutrition and hydration (ANH) from patients in a permanent vegetative state (PVS) requires judicial approval in England and Wales, even when families and healthcare professionals agree that withdrawal is in the patient9s best interests. Part of the rationale underpinning the original recommendation for such court approval was the reassurance of patients’ families, but there has been no research as to whether or not family members are reassured by the requirement for court proceedings or (...) how they experience the process. The research reported here draws on in-depth narrative interviews with 10 family members (from five different families) of PVS patients who have been the subject of court proceedings for ANH-withdrawal. We analyse the empirical evidence to understand how family members perceive and experience the process of applying to the courts for ANH-withdrawal and consider the ethical and practice implications of our findings. Our analysis of family experience supports arguments grounded in economic and legal analysis that court approval should no longer be required. We conclude with some suggestions for how we might develop other more efficient, just and humane mechanisms for reviewing best interests decisions about ANH-withdrawal from these patients. (shrink)

The international media recently reported the case of Eluana Englaro, a 38-year-old woman in a permanent vegetative state who died in February 2009 following withdrawal of her feeding tube. At the time of her death, she had been unconscious for 17 years. For many years, her father had been seeking permission to allow her to die. His request was rejected by the courts several times on different grounds, until the Italian Supreme Court finally granted it. The case (...) caused considerable political turmoil. The government, the president, the Constitutional Court, and the European Court of Human Rights got involved. This paper gives an account of the history of the case, enriched by personal communications with the people directly involved and a memoir by the father of Eluana. (shrink)

The argument that a permanent vegetative state equates to death because it marks the death of the person is not a new one, but I wonder whether Ravelingien et al1 need to regard those in a PVS as dead to make a case for animal to human transplantation trials taking place in such people. It is not an argument likely to convince anyone who refuses to accept that only human persons have inherent value, dignity or a right (...) to life, and the arguments on both sides have been well rehearsed, with no sign of reconciliation. My own view is that people in a PVS are still alive, albeit with a poor quality of life. I see no objection in principle to the proposal that competent people can decide, in advance, to participate in research when they become incompetent. At the present time, it is generally accepted that an advance refusal of consent should be respected. Some controversy exists on whether someone can insist on treatment in advance, but in Ravelingien et al’s1 paper, what is being proposed is not that people can insist on becoming research participants, but rather that they can signal a willingness to become such a participant in the future. Indeed, this principle can be extended to competent people such as those with early …. (shrink)

Right to die legal cases in the United States have evolved over the last 25 years, beginning with the Karen Quinlan case in 1975. Different substantive and procedural issues have been raised in these cases, and society's thinking has changed as a result of the far more complex legal issues that appear today as opposed to the simplistic views raised in early landmark cases. Many of the early cases involved patients in a vegetative state, but more recently patients (...) who were in a minimally conscious state have been the center of attention. Early cases involved the withdrawal of respirators and other sophisticated technology, but later cases centered on the withdrawal of artificial nutrition and hydration, and even whether it was permissible for competent patients to stop eating and drinking in a normal manner. Initial cases pitted families who argued for withdrawal of treatment, usually against the attending physicians and hospitals and/or the state or federal government, who argued for continuation of treatment. (shrink)

Right to die legal cases in the United States have evolved over the last 25 years, beginning with the Karen Quinlan case in 1975. Different substantive and procedural issues have been raised in these cases, and society's thinking has changed as a result of the far more complex legal issues that appear today as opposed to the simplistic views raised in early landmark cases. Many of the early cases involved patients in a vegetative state, but more recently patients (...) who were in a minimally conscious state have been the center of attention. Early cases involved the withdrawal of respirators and other sophisticated technology, but later cases centered on the withdrawal of artificial nutrition and hydration, and even whether it was permissible for competent patients to stop eating and drinking in a normal manner. Initial cases pitted families who argued for withdrawal of treatment, usually against the attending physicians and hospitals and/or the state or federal government, who argued for continuation of treatment. (shrink)

I argue that a version of Pascal's Wager applies to the persistent vegetative state with sufficient force that it ought to part of advance directives.

On January 5, 2019, the Associated Press reported that a woman thought to have been in the vegetative state for over a decade gave birth at a Hacienda HealthCare facility. Until she delivered, the staff at the Phoenix center had not noticed that their patient was pregnant. The patient was also misdiagnosed.Misdiagnosis of patients with disorders of consciousness in institutional settings is more the norm than the exception. Misdiagnosis is also connected to a broad and extremely significant change (...) in the understanding of the vegetative state—a change that the field of bioethics has not yet fully taken into account. In September 2018, the American Academy of Neurology, the American College of Rehabilitation Medicine, and the National Institute on Disability, Independent Living, and Rehabilitation Research issued a comprehensive evidence‐based review on disorders of consciousness and an associated practice guideline on the care of these patients. These landmark publications update the 1994 Multi‐Society Task Force Report on the Vegetative State, which subcategorized the persistent vegetative state as either persistent (once the vegetative state lasted one month) or permanent (once the vegetative state lasted three months after anoxic injury or twelve months after traumatic injury). Noting that 20 percent of patients thought to be permanently unconscious might regain some level of consciousness, the new guideline has eliminated the permanent vegetative state as a diagnostic category, replacing it with the chronic vegetative state. (shrink)

Some physicians refuse to perform life-sustaining interventions, such as tracheostomy, on patients who are very likely to remain permanently unconscious. To explain their refusal, these clinicians often invoke the language of “futility”, but this can be inaccurate and can mask problematic forms of clinical power. This paper explores whether such refusals should instead be framed as conscientious objections. We contend that the refusal to provide interventions for patients very likely to remain permanently unconscious meets widely recognized ethical standards for the (...) exercise of conscience. We conclude that conscientious objection to tracheostomy and other life-sustaining interventions on such patients can be ethical because it does not necessarily constitute a form of invidious discrimination. Furthermore, when a physician frames their refusal as conscientious objection, it makes transparent the value-laden nature of their objection and can better facilitate patient access to the requested treatment. (shrink)

Why do we persist in the relentless pursuit of artificial nourishment and other treatments to maintain a permanently unconscious existence? In facing the future, if not the present world-wide reality of a huge number of persistent vegetative state (PVS) patients, will they be treated because of our ethical commitment to their humanity, or because of an ethical paralysis in the face of biotechnical progress? The PVS patient is cut off from the normal patterns of human connection and communication, (...) with a life unlike other forms of human existence. Why the struggle to justify ending a life which, it is said, has suffered an irreversible loss of the content of consciousness? Elsewhere, the authors have addressed the ethical controversies and confusion engendered by ambiguous terminology, misuse of medical facts and the differing interpretations of what constitutes 'effective' treatment: in particular, the issue of whether in fact artificial nutrition and hydration is a medical treatment, or simply part of the obligatory care owed to all patients, permanently unconscious or not. In this paper, we intend to argue that recent analyses of medical futility, its meaning and ethical implications, despite an absence of public consensus, permit some tentative re-evaluation of our ethical obligations to the PVS patient. (shrink)

It is the case of a 66-year-old man in a permanent vegetative state which his family is blocked due to suffering. A process and a document of a shared decision-making between the family and the professional team allowed giving emotional support, unlocking the situation and preventing complicated grief.

Wijdicks and colleagues1 recently presented the Full Outline of UnResponsiveness (FOUR) scale as an alternative to the Glasgow Coma Scale (GCS)2 in the evaluation of consciousness in severely brain-damaged patients. They studied 120 patients in an intensive care setting (mainly neuro-intensive care) and claimed that “the FOUR score detects a locked-in syndrome, as well as the presence of a vegetative state.”1 We fully agree that the FOUR is advantageous in identifying locked-in patients given that it specifically tests for (...) eye movements or blinking on command. This is welcomed given that misdiagnosis of the locked-in syndrome has been shown to occur in more than half of the cases (see Laureys and colleagues3 for review). As for the diagnosis of the vegetative state, the scale explicitly tests for visual pursuit, and hence can disentangle the vegetative state from the minimally conscious state (MCS). The diagnostic criteria for MCS have been proposed4 only recently, but Wijdicks and colleagues1 do not mention the existence of this clinical entity in their article. As for the vegetative state, MCS can be encountered in the acute or subacute setting as a transitional state on the way to further recovery, or it can be a more chronic or even permanent condition. The MCS refers to patients showing inconsistent, albeit clearly discernible, minimal behavioral evidence of consciousness (eg, localization of noxious stimuli, eye fixation or tracking, reproducible movement to command, or nonfunctional verbalization).4 The FOUR scale does not test for all of the behavioral criteria required to diagnose MCS.4 It is known from the literature (see Majerus and colleagues5 for review) that about a third of patients diagnosed with vegetative state are actually in MCS, and this misdiagnosis can lead to major clinical, therapeutic, and ethical consequences. We tested the ability of the newly proposed FOUR scale to correctly diagnose the vegetative state in an acute (intensive care and neurology ward) and chronic (neurorehabilitation) setting.. (shrink)

It seems obvious that phenomenally conscious experience is something of great value, and that this value maps onto a range of important ethical issues. For example, claims about the value of life for those in a permanent vegetative state, debates about treatment and study of disorders of consciousness, controversies about end-of-life care for those with advanced dementia, and arguments about the moral status of embryos, fetuses, and non-human animals arguably turn on the moral significance of various facts (...) about consciousness. However, though work has been done on the moral significance of elements of consciousness, such as pain and pleasure, little explicit attention has been devoted to the ethical significance of consciousness. In this book Joshua Shepherd presents a systematic account of the value present within conscious experience. This account emphasizes not only the nature of consciousness, but the importance of items within experience such as affect, valence, and the complex overall shape of particular valuable experiences. Shepherd also relates this account to difficult cases involving non-humans and those with disorders of consciousness, arguing that the value of consciousness influences and partially explains the degree of moral status a being possesses, without fully determining it. The upshot is a deeper understanding of both the moral importance of phenomenal consciousness and its relations to moral status. This book will be of great interest to philosophers and students of ethics, bioethics, philosophy of psychology, philosophy of mind and cognitive science. (shrink)

Disorders of consciousness and the permanent vegetative state -- Legal and political wrangling over Terri's life -- In context--law and ethics -- Terri's wishes -- The limits of evidence -- The implications of surrogacy -- Qualities of life -- Feeding -- The preservation of life -- Respect and care : an alternative framework.

Abstract:This paper, presented as the 2019 Cambridge Quarterly Neuroethics NetworkCharcot Lecture, traces the nosology of disorders of consciousness in light of 2018 practice guidelines promulgated by the American Academy of Neurology, the American College of Rehabilitation Medicine and the National Institute on Disability, Independent Living and Rehabilitation Research. By exploring the ancient origins of Jennett and Plum’s persistent vegetative state and subsequent refinements in the classification of disorders of consciousness—epitomized by the minimally conscious state, cognitive motor dissociation, (...) and the recently described chronic vegetative state—the author argues that there is a counter-narrative to the one linking these conditions to the right to die. Instead, there is a more nuanced schema distinguishing futility from utility, informed by technical advances now able to identify covert consciousness contemplated by Jennett and Plum. Their prescience foreshadows recent developments in the disorders of consciousness literature yielding a layered legacy with implications for society’s normative and legal obligations to these patients. (shrink)

Schechtman’s ‘Person Life View’ offers an account of personal identity whereby persons are the unified loci of our practical and ethical judgment. PLV also recognises infants and permanent vegetative state patients as being persons. I argue that the way PLV handles these cases yields an unexpected result: the dead also remain persons, contrary to the widely-accepted ‘Termination Thesis.’ Even more surprisingly, this actually counts in PLV’s favor: in light of our social and ethical practices which treat the (...) dead as moral patients, PLV gives a more plausible account of the status of the dead than its rival theories. (shrink)

In English law there is a strong presumption that life should be maintained. This article contends that this presumption means that it is always unlawful to withdraw life-sustaining treatment from patients in permanent vegetative state and minimally conscious state, and that the reasons for this being the correct legal analysis mean also that such withdrawal will always be ethically unacceptable. There are two reasons for this conclusion. First, the medical uncertainties inherent in the definition and diagnosis (...) of PVS/MCS are such that, as a matter of medical fact, it can never be established, with the degree of certainty necessary to rebut the presumption, that it is not in the patient’s best interest to remain alive. And second, that even if permanent unconsciousness can be unequivocally demonstrated, the presumption is not rebutted. This is because there is plainly more to human existence than consciousness. It can never be said that the identity of the patient whose best interests are at stake evaporates when that person ceases to be conscious. Nor can it be said that the best interests of an unconscious person do not mandate continued biological existence. We simply cannot know. That uncertainty is legally conclusive, and should be ethically conclusive. (shrink)

This collection contains twenty-one thought-provoking essays on the controversies surrounding the moral and legal distinctions between euthanasia and "letting die." Since public awareness of this issue has increased this second edition includes nine entirely new essays which bring the treatment of the subject up-to-date. The urgency of this issue can be gauged in recent developments such as the legalization of physician-assisted suicide in the Netherlands, "how-to" manuals topping the bestseller charts in the United States, and the many headlines devoted to (...) Dr. Jack Kevorkian, who has assisted dozens of patients to die. The essays address the range of questions involved in this issue pertaining especially to the fields of medical ethics, public policymaking, and social philosophy. The discussions consider the decisions facing medical and public policymakers, how those decisions will affect the elderly and terminally ill, and the medical and legal ramifications for patients in a permanently vegetative state, as well as issues of parent/infant rights. The book is divided into two sections. The first, "Euthanasia and the Termination of Life-Prolonging Treatment" includes an examination of the 1976 Karen Quinlan Supreme Court decision and selections from the 1990 Supreme Court decision in the case of Nancy Cruzan. Featured are articles by law professor George Fletcher and philosophers Michael Tooley, James Rachels, and Bonnie Steinbock, with new articles by Rachels, and Thomas Sullivan. The second section, "Philosophical Considerations," probes more deeply into the theoretical issues raised by the killing/letting die controversy, illustrating exceptionally well the dispute between two rival theories of ethics, consequentialism and deontology. It also includes a corpus of the standard thought on the debate by Jonathan Bennet, Daniel Dinello, Jeffrie Murphy, John Harris, Philipa Foot, Richard Trammell, and N. Ann Davis, and adds articles new to this edition by Bennett, Foot, Warren Quinn, Jeff McMahan, and Judith Lichtenberg. (shrink)

One reason why the Biological Approach to personal identity is attractive is that it doesn’t make its advocates deny that they were each once a mindless fetus.[i] According to the Biological Approach, we are essentially organisms and exist as long as certain life processes continue. Since the Psychological Account of personal identity posits some mental traits as essential to our persistence, not only does it follow that we could not survive in a permanently vegetative state or irreversible coma, (...) but it would appear that none of us was ever a mindless fetus. But what happens to the organism that was a mindless fetus when the _person_ arrives on the scene?[ii] Can the acquisition of thought destroy an organism? That would certainly be news to biologists. Does one organism cease to exist with the emergence of thought and another organism, one identical to the person, take its place? (Burke,1994) That doesn’t seem much more plausible than the previous move. Should identity and Leibniz. (shrink)

The British Medical Association and Royal College of Physicians have published new guidance, endorsed by the General Medical Council, on decision-making about clinically assisted nutrition and hydration and adults who lack capacity to consent. The development of the guidance follows a series of legal cases which has created confusion about the precise circumstances in which an application to the court is required before CANH is withdrawn which has culminated with the decision of the Supreme Court in National Health Service Trust (...) versus Y. 1 This confirmed that there is no requirement to go to court, providing there is agreement as to the patient’s best interests, the provisions of the Mental Capacity Act 2005 have been observed, and the relevant professional guidance has been followed. The new guidance covers all decisions to start, restart, continue, or stop providing CANH in patients who are not imminently dying, in circumstances where CANH is the primary life-sustaining treatment being provided. It goes beyond the category of patients in permanent vegetative state or minimally conscious state who have previously been the subject of court applications, and also covers decisions for patients with neurodegenerative conditions and patients who have suffered a sudden onset brain injury in addition to having multiple comorbidities or general frailty which is likely to impact on life expectancy. It provides a clear statement of doctors’ legal responsibilities, covers the importance of robust best interests’ assessments and sets out the process to be followed for sufficient independent scrutiny of decisions. In light of some of the identified problems with decisions about CANH, a particular focus of the guidance is on the importance of regular best interests’ assessments, and it provides detailed practical guidance about how to approach these. The development of …. (shrink)

Many debates about the moral status of things—for example, debates about the natural rights of human fetuses or nonhuman animals—eventually migrate towards a discussion of the capacities of the things in question—for example, their capacities to feel pain, think, or love. Yet the move towards capacities is often controversial: if a human’s capacities are the basis of its moral status, how could a human having lesser capacities than you and I have the same "serious" moral status as you and I? (...) This book answers this question by arguing that if something is human, it has a set of typical human capacities; that if something has a set of typical human capacities, it has serious moral status; and thus all human beings have the same sort of serious moral status as you and I. Beginning from what our common intuitions tell us about situations involving "temporary incapacitation"—where a human organism has, then loses, then regains a certain capacity—this book argues for substantive conclusions regarding human fetuses and embryos, humans in a permanent vegetative state, humans suffering from brain diseases, and humans born with genetic disorders. Since these conclusions must have some impact on our ongoing moral and political debates about the proper treatment of such humans, this book will be useful to professionals and students in philosophy, bioethics, law, medicine, and public policy. (shrink)

In their book Identity, Personhood and the Law,1 authors Charles Foster and Jonathan Herring seek, among other things, to show that the law is based on overly simplistic assumptions about the nature of personal identity. In their Author Meets Critics précis, they summarise the main contentions of the book on this issue. Difficulties in the law’s simplistic approach are, they claim, exposed when we think about people with dementia, ‘where [in advanced cases] I may turn into a person with no (...) apparent continuity at all with my own self’ and where: > X2 will simply inhabit a body composed of some of the same cells as belonged to X1. Deep brain stimulation ‘may similarly transform ‘my’ attributes to such an extent that it seems false to continue to talk about ‘me’ at all.’ Other examples, including cases of patients suffering severe anorexia or who have fallen into a permanent vegetative state, are given. All of them ‘call into question the atomistic, billiard-ball model of identity used by the law and by our uninterrogated intuitions.’ The authors’ approach is to begin with these and a number of other examples and raise several philosophical and ethical issues. They then discuss the issues and develop principles which they apply to the same examples at the end of the book. In this commentary, I cannot do justice to all the claims and challenges to the law the authors make in their rich and highly recommended book. I will focus only on the issue of personal identity and their remarks about the simplistic assumptions made by the courts on this issue. Although my comments will not always be in agreement with theirs, these remarks should be taken …. (shrink)

Defenders of the Psychological Approach to Personal Identity (PAPI) insist that the possession of some kind of mind is essential to us. We are essentially thinking beings, not living creatures. We would cease to exist if our capacity for thought was irreversibly lost due to a coma or permanent vegetative state. However, the onset of such conditions would not mean the death of an organism. It would survive in a mindless state. But this would appear to (...) mean that before the loss of cognition and the destruction of the person, the organism and the person were spatially coincident entities – two beings composed of the same matter at the same time and place. Perhaps the most problematic aspect of positing spatially coincident material entities is that it would seem to result in there being one too many thinkers. Since the person can obviously think, the organism should also have such a capacity as a result of possessing the same brain as well as every other atom of the person. This means that there now exist two thinking beings under the reader’s clothes! (shrink)

This article argues that greater theoretical attention should be paid to the figure of the zombie in the fields of law, cultural studies and philosophy. Using The Walking Dead as a point of critical departure concepts of legal personhood are interrogated in relation to permanent vegetative states, bare life and the notion of the third person. Ultimately, the paper recommends a rejection of personhood; instead favouring a legal and philosophical engagement with humanity and embodiment. Personhood, it is suggested, (...) creates a barrier in law allowing individuals in certain contexts to be rendered non-persons and thus outside the scope of legal rights. An approach that rejects personhood in favour of embodiment would allow individuals to enjoy their rights without being subject to such discrimination. It is also suggested that the concept of the human, itself complicated by the figure of the zombie, allows for legal engagement with a greater number of putative rights claimants including admixed embryos, cyborgs and the zombie. (shrink)

Discussion of the ethics of forgoing medically provided nutrition and hydration tends to focus on adults rather than infants and children. Many appellate court decisions address the legal propriety of forgoing medically provided nutritional support of adults, but only a few have ruled on pediatric cases that pose the same issue.The cessation of nutritional support is implemented most commonly for patients in apermanent vegetative state(often referred to aspersistent vegetative state(hereinafter “PVS”)). An estimated 4,000 to 10,000 American (...) children are in the permanent vegetative state, compared to 10,000 to 25,000 adults. Yet the dearth of literature, case reports, and court decisions suggests that physicians and families of pediatric patients stop medically provided nutrition or seek court orders much less frequently. (shrink)

Ravelingien et al have suggested that early human xenotransplantation trials should be carried out on patients who are in a permanent vegetative state (PVS) and who have previously granted their consent to the use of their bodies in such research in the event of their cortical death. Unfortunately, their philosophical defence of this suggestion is unsatisfactory in its current formulation, as it equivocates on the key question of the status of patients who are in a PVS. The (...) solution proposed by them rests on the idea that it should be up to people themselves to determine when they should be treated as dead. Yet the authors clearly believe (and state) that patients who are in a PVS are in fact dead. Finally, given the public good that their proposal is intended to achieve, the moral importance they place on the consent of a person to the use of his or her body in research is ultimately only defensible in so far as this consent represents the wishes of a living person. It is thus only a gentle caricature of their position to suggest that according to their account, consent to participation in xenotransplantation research is a “right of the living dead”. The equivocation by Ravelingien et al on the question of whether these people are living or dead means that they avoid confronting the implications of their argument. The solution proposed by Ravelingien et al to the problem of how we should proceed with xenotransplantation research is therefore not as neat as it first seems to be. (shrink)

A recent legal case involving an ambiguous diagnosis in a woman with a severe disorder of consciousness raises pressing questions about treatment withdrawal in a time when much of what experts know about disorders of consciousness is undergoing revision and refinement. How much should diagnostic certainty about consciousness matter? For the judge who refused to allow withdrawal of artificial nutrition and hydration, it was dispositive. Rather than relying on substituted judgment or best interests to determine treatment decisions, he ruled that (...) withdrawal was categorically prohibited, even as he concluded that Hannah Capes was more likely than not in a permanent vegetative state. In many jurisdictions, his decision would likely be consistent with existing law. Evolving technological advances have demonstrated that biologically distinct diagnoses incorporated into state laws may be difficult to establish even under ideal conditions. We offer the Capes case for purposes of examining the consequences of enshrined legal distinctions between permanent vegetative state and other severe disorders of consciousness. Insistence on proof of the permanent absence of consciousness before treatment withdrawal is allowed fails to respect the rights of persons with disorders of consciousness. Even the well-established rights to treatment withdrawal for those in a permanent vegetative state may be in jeopardy if reform is not undertaken. (shrink)

: The "dead donor rule" is increasingly under attack for several reasons. First, there has long been disagreement about whether there is a correct or coherent definition of "death." Second, it has long been clear that the concept and ascertainment of "brain death" is medically flawed. Third, the requirement stands in the way of improving organ supply by prohibiting organ removal from patients who have little to lose—e.g., infants with anencephaly—and from patients who ardently want to donate while still alive—e.g., (...) patients in a permanent vegetative state. One argument against abandoning the dead donor rule has been that the rule is important to the general public. There is now data suggesting that this assumption also may be flawed. These findings add additional weight to proposals to abandon the dead donor rule so that organ supply can be expanded in a way that is consistent with traditional notions of ethics, law, public policy, and public opinion. (shrink)

In this paper, I examine Jeff McMahan’s arguments for his claim that we are not human organisms, and the arguments of Derek Parfit to the same effect in a recent paper. McMahan uses these arguments to derive conclusions concerning the moral status of embryos and permanent vegetative state patients. My claim will be that neither thinker has successfully shown that we are not human beings, and therefore these arguments do not establish the ethical conclusions that McMahan has (...) sought to draw from the arguments in respect of the moral status of embryos and PVS patients. (shrink)

This collection contains twenty-one thought-provoking essays on the controversies surrounding the moral and legal distinctions between euthanasia and "letting die." Since public awareness of this issue has increased this second edition includes nine entirely new essays which bring the treatment of the subject up-to-date. The urgency of this issue can be gauged in recent developments such as the legalization of physician-assisted suicide in the Netherlands, "how-to" manuals topping the bestseller charts in the United States, and the many headlines devoted to (...) Dr. Jack Kevorkian, who has assisted dozens of patients to die. The essays address the range of questions involved in this issue pertaining especially to the fields of medical ethics, public policymaking, and social philosophy. The discussions consider the decisions facing medical and public policymakers, how those decisions will affect the elderly and terminally ill, and the medical and legal ramifications for patients in a permanently vegetative state, as well as issues of parent/infant rights. The book is divided into two sections. The first, "Euthanasia and the Termination of Life-Prolonging Treatment" includes an examination of the 1976 Karen Quinlan Supreme Court decision and selections from the 1990 Supreme Court decision in the case of Nancy Cruzan. Featured are articles by law professor George Fletcher and philosophers Michael Tooley, James Rachels, and Bonnie Steinbock, with new articles by Rachels, and Thomas Sullivan. The second section, "Philosophical Considerations," probes more deeply into the theoretical issues raised by the killing/letting die controversy, illustrating exceptionally well the dispute between two rival theories of ethics, consequentialism and deontology. It also includes a corpus of the standard thought on the debate by Jonathan Bennet, Daniel Dinello, Jeffrie Murphy, John Harris, Philipa Foot, Richard Trammell, and N. Ann Davis, and adds articles new to this edition by Bennett, Foot, Warren Quinn, Jeff McMahan, and Judith Lichtenberg. (shrink)

Discussion of the ethics of forgoing medically provided nutrition and hydration tends to focus on adults rather than infants and children. Many appellate court decisions address the legal propriety of forgoing medically provided nutritional support of adults, but only a few have ruled on pediatric cases that pose the same issue.The cessation of nutritional support is implemented most commonly for patients in a permanent vegetative state ). An estimated 4,000 to 10,000 American children are in the (...) class='Hi'>permanent vegetative state, compared to 10,000 to 25,000 adults. Yet the dearth of literature, case reports, and court decisions suggests that physicians and families of pediatric patients stop medically provided nutrition or seek court orders much less frequently. (shrink)

In 1992, Eluana Englaro was involved in a car accident in Italy that eventually left her in a permanent vegetative state requiring artificial nutrition and hydration. This paper, after briefly reviewing Eluana's case, gives a chronicle of Eluana last months until her death on 9 February 2009, and discusses the right-to-die controversy in Italy. For many years, Mr Englaro, Eluana's father, would litigate to enforce what he considered to be his daughter's wish to discontinue life-prolonging treatment. In (...) July 2008, the Court of Appeal of Milan has given its authorisation for artificial life support to be withdrawn. This ruling sparked a crusade, led by the government and the Vatican, against the court and Eluana's father, which included insinuations that the latter was murdering his daughter. Public opinion has overwhelmingly been sympathetic to the father's difficult decision, in stark contrast to the reactionary stance taken by the government. With the notable advances of medicine, doctors are increasingly faced with ethical issues. The vegetative state is just one of the many clinical conditions that obligate health professionals to reflect on ethical matters. The withdrawal of life-supporting care, and of artificial nutrition and hydration in particular in permanent vegetative state patients remains a measure which violates a tradition and a consolidated practice. It was thus inevitable that it would create great controversy. We should work towards making a decision process that ensures that continuation or suspension of artificial nutrition and hydration follows an explicit procedure, promoting the sharing and respect of the diverse moral responsibility of family members, nursing and medical staff. (shrink)

This special issue, Withholding artificial nutrition and hydration, comprises several papers, commentaries and responses centred largely around the issues raised by the 2011 decision of the English Court of Protection in W v M.i In that case, the mother of an adult patient applied for the withdrawal of life-sustaining treatment . In 2003, the patient, M, had contracted viral encephalitis and suffered irreparable brain damage as a result. She fell into a coma, and when she emerged appeared to be in (...) a vegetative state and for 8 years was entirely dependent on life-sustaining care.Following her mother's application, M was held to lack capacity and hence in accordance with section 4 of the Mental Capacity Act 2005 , the matter turned on whether it was in her best interests for the treatment to be withdrawn. It was made clear in the 1993 decision of Airedale NHS Trust v Bland that life-sustaining treatment could be withdrawn from a patient in a permanent vegetative state if, on balance, it was not in his or her interest to continue treatment.ii The MCA also allows for withdrawal of treatment, although the approach to best interests is slightly different. However, the case of W v M is importantly different from the Bland case, because M was found not to be in a PVS, but instead was minimally conscious . Much evidence was presented of her capacity to respond to stimuli, seemingly express emotion and occasionally speak.In the first of his papers in this issue , Julian Sheather provides an overview of the case, particularly illuminating the discussions of M's interests and the views of her …. (shrink)

A young man, terminally ill and in extreme suffering, asks to be removed from life support, requesting morphine first so he'll be asleep when the machine stops. His physician agrees, but the hospital's chief administrator intervenes, arguing that the morphine might itself cause death, leaving the physician open to criminal indictment for murder. To placate the administrator, the doctor and patient reach a grim compromise: life support will be disconnected first, and only after manifest signs of suffering appear will the (...) physician administer the morphine, to alleviate pain. The patient's request is ultimately respected, but many staff members feel he has been made to suffer needlessly. This is just one of many cases Ruth Macklin discusses in Enemies of Patients, an eye-opening look at the growing number of forces that are hostile to the interests of patients, including hospital administrators, lawyers who represent hospitals, insurance companies, government regulations, and even some well intentioned physicians. Macklin, a highly regarded medical ethicist, the author of Mortal Choices and the subject of a New York Times Magazine cover story, provides a behind-the-scenes look at how the patient's ethical rights are often violated. She describes, for instance, how a new breed of hospital administrator, the risk manager, acts consistently as an enemy of the patient, often urging physicians to continue aggressive, expensive treatments for critically ill patients--even when the patient and doctor agree the treatment should cease--for fear of lawsuits, bad publicity, or criminal indictment. (Macklin points out, for instance, that even though no physician has ever been convicted of a crime for withdrawing treatment from a patient in a permanent vegetative state, hospital lawyers and risk managers regularly assert that there is a danger of criminal liability in such cases.) The government also can become an enemy of patients. The most egregious case, according to Macklin, is the Federal government's "gag rule" which has prohibited health care facilities that receive Title X funds from discussing abortion with pregnant women, violating the patient's right to full information. And physicians themselves can become enemies of patients. Some, seeing themselves as fiscal gatekeepers, ration expensive health care procedures on financial rather than medical grounds. Some physicians refuse to treat patients who don't follow their advice (a cardiologist, for instance, who will not take care of patients who smoke) and others won't treat patients who pose a threat of lawsuit (such as a California woman in need of life-sustaining dialysis, who had previously sued another physician). Packed with numerous case histories drawn from the author's experience in a major urban medical center, Enemies of Patients will give readers a better understanding of their rights as patients and show them how to forge an alliance with their doctors against common enemies. (shrink)

The starting point for discussion in this paper is a case study, namely that of the controversy surrounding the case of withdrawing feeding from Eluana Englaro who had been in a permanent vegetative state (PVS) for seventeen years. I press the case for a recovery of classical prudence or practical wisdom, as understood by Thomas Aquinas, rather than beginning with deontological or utilitarian arguments. I suggest that prudence has relevance not just for specific issues concerned with cases (...) involving PVS, but also addresses wider problems raised by secular end-of-life ethical discourse, with its emphasis on individual choice on the one hand and concerns about the slippery slope towards more liberal legislation on the other hand. Greater attention to the hospice movement is, I suggest, ambiguous in ethical terms. Finally, I argue that one of the strengths of a Thomistic understanding of prudence is its deep connection with the life of grace as that informed by consideration of the work of the Holy Spirit. This incorporates a theological element without falling into the trap of a deontology that can be dismissed by those outside the household of faith, while allowing a Christian witness to persist in such a contested public arena. (shrink)

The concept of potentiality is often invoked in debate over the moral status of human embryos. It has also been invoked, though less prominently, in debate over the moral status of anencephalic infants, individuals in permanent vegetative state, and the whole-brain dead. In this paper, I examine some of the theoretical assumptions underlying the concept of potentiality invoked in these debates. I show how parties in the debate over the ethical significance of potentiality have been talking past (...) each other to a large extent because they rely on different concepts of potentiality. The conceptual differences are traced to different assumptions about the nature of persons and whether external factors may affect determinations of possibility and therefore potentiality. Any assessment about the ethical significance of potentiality therefore requires an evaluation of alternative concepts personhood and the connection between possibility and potentiality. (shrink)

The article addresses the potential impact of functional brain imaging (functional magnetic resonance imaging and positron-emission tomography) on surrogate end-of-life decision-making in light of varying state-law definitions of consciousness, some of which define awareness behaviorally and others functionally. The article concludes that, in light of admonitions by neuroscientists that functional brain imaging cannot yet replace behavioral evaluation to determine the existence of consciousness, state legislatures, courts and drafters of written advance healthcare directives should consider treating behavior, not function, (...) as the touchstone for end-of-life decision-making. (shrink)

This paper discusses how alternative concepts of personhood affect the definition of death. I argue that parties in the debate over the definition of death have employed different concepts of personhood, and thus have been talking past each other by proposing definitions of death for different kinds of things. In particular, I show how critics of the consciousness-related, neurological formation of death have relied on concepts of personhood that would be rejected by proponents of that formulation. These critics rest on (...) treating persons as qualitative specifications of human organisms or as identical to human organisms. Since advocates of the consciousness-related, neurological formulation of death are not committed to either of these views of personhood, these critics commit the fallacy of attacking a straw man. I then clarify the substantive concept of personhood that may be invoked in the consciousness-related, neurological formulation of death, and argue that, on this view and contra Bernat, Culver, and Gert, persons have always been the kind of thing that can literally die. I conclude by suggesting that the discussion of defining death needs to focus on which approach to personhood makes the most sense metaphysically and morally. (shrink)

The term “euthanasia” is used in conflicting ways in the bioethical literature, as is the term “assisted suicide,” resulting in definitional confusion, ambiguities, and biases which are counterproductive to ethical and legal discourse. I aim to rectify this problem in two parts. Firstly, I explore a range of conflicting definitions and identify six disputed definitional factors, based on distinctions between (1) killing versus letting die, (2) fully intended versus partially intended versus merely foreseen deaths, (3) voluntary versus nonvoluntary versus involuntary (...) decisions, (4) terminally ill versus non-terminally ill patients, (5) patients who are fully conscious versus those in permanent comas or persistent vegetative states, and (6) patients who are suffering versus those who are not. Secondly, I distil these factors into six “building blocks” and combine them to develop an unambiguous, value-neutral taxonomy of “end-of-life practices.” I hope that this taxonomy provides much-needed clarification and a solid foundation for future ethical and legal discourse. (shrink)

Destination therapy is the permanent implantation of a left ventricular assist device in patients with end-stage, severe heart failure who are ineligible for heart transplantation. DT improves both the quality of life and prognosis of patients with end-stage heart failure. However, there are also downsides to DT such as life-threatening complications and the potential for the patient to live beyond their desired length of life following such major complications. Because of deeply ingrained cultural and religious beliefs regarding death and (...) the sanctity of life, Japanese society may not be ready to make changes needed to enable patients to have LVADs deactivated under certain circumstances to avoid needless suffering. Western ethical views that permit LVAD deactivation based mainly on respect for autonomy and dignity have not been accepted thus far in Japan and are unlikely to be accepted, given the current Japanese culture and traditional values. Some healthcare professionals might regard patients as ineligible for DT unless they have prepared advance directives. If this were to happen, the right to prepare an advance directive would instead become an obligation to do so. Furthermore, patient selection for DT poses another ethical issue. Given the predominant sanctity of life principle and lack of cost-consciousness regarding medical expenses, medically appropriate exclusion criteria would be ignored and DT could be applied to various patients, including very old patients, the demented, or even patients in persistent vegetative states, through on-site judgment. There is an urgent need for Japan to establish and enact a basic act for patient rights. The act should include: respect for a patient’s right to self-determination; the right to refuse unwanted treatment; the right to prepare legally binding advance directives; the right to decline to prepare such directives; and access to nationally insured healthcare. It should enable those concerned with patient care involving DT to seek ethical advice from ethics committees. Furthermore, it should state that healthcare professionals involved in the discontinuation of life support in a proper manner are immune to any legal action and that they have the right to conscientiously object to LVAD deactivation. (shrink)

Background Destination therapy is the permanent implantation of a left ventricular assist device in patients with end-stage, severe heart failure who are ineligible for heart transplantation. DT improves both the quality of life and prognosis of patients with end-stage heart failure. However, there are also downsides to DT such as life-threatening complications and the potential for the patient to live beyond their desired length of life following such major complications. Because of deeply ingrained cultural and religious beliefs regarding death (...) and the sanctity of life, Japanese society may not be ready to make changes needed to enable patients to have LVADs deactivated under certain circumstances to avoid needless suffering. Main text Western ethical views that permit LVAD deactivation based mainly on respect for autonomy and dignity have not been accepted thus far in Japan and are unlikely to be accepted, given the current Japanese culture and traditional values. Some healthcare professionals might regard patients as ineligible for DT unless they have prepared advance directives. If this were to happen, the right to prepare an advance directive would instead become an obligation to do so. Furthermore, patient selection for DT poses another ethical issue. Given the predominant sanctity of life principle and lack of cost-consciousness regarding medical expenses, medically appropriate exclusion criteria would be ignored and DT could be applied to various patients, including very old patients, the demented, or even patients in persistent vegetative states, through on-site judgment. Conclusion There is an urgent need for Japan to establish and enact a basic act for patient rights. The act should include: respect for a patient’s right to self-determination; the right to refuse unwanted treatment; the right to prepare legally binding advance directives; the right to decline to prepare such directives; and access to nationally insured healthcare. It should enable those concerned with patient care involving DT to seek ethical advice from ethics committees. Furthermore, it should state that healthcare professionals involved in the discontinuation of life support in a proper manner are immune to any legal action and that they have the right to conscientiously object to LVAD deactivation. (shrink)

Consciousness in experimental subjects is typically inferred from reports and other forms of voluntary behaviour. A wealth of everyday experience confirms that healthy subjects do not ordinarily behave in these ways unless they are conscious. Investigation of consciousness in vegetative state patients has been based on the search for neural evidence that such broad functional capacities are preserved in some vegetative state patients. We call this the standard approach. To date, the results of the standard approach (...) have suggested that some vegetative state patients might indeed be conscious, although they fall short of being demonstrative. The fact that some vegetative state patients show evidence of consciousness according to the standard approach is remarkable, for the standard approach to consciousness is rather conservative, and leaves open the pressing question of how to ascertain whether patients who fail such tests are conscious or not. We argue for a cluster-based ‘natural kind’ methodology that is adequate to that task, both as a replacement for the approach that currently informs research into the presence or absence of consciousness in vegetative state patients and as a methodology for the science of consciousness more generally. 1. Introduction2. The Vegetative State3. The Standard Approach4. The Natural Kind Methodology5. Is Consciousness a Special Case? 5.1 Is consciousness a natural kind?5.2 A special obstacle?6. Conclusion. (shrink)

Dramatic modern advances in emergency and resuscitation medicine, starting perhaps with the development of effective mechanical ventilators in the mid-20th century, have created a large class of persons who in earlier times would almost certainly have died, but who can now go on existing, suspended at least temporarily in a state somewhere between death and the conscious life they formerly pursued. A very wide range of brain injuries lead first to coma, in which the patient shows no sign of (...) conscious awareness, or even of wakefulness, in which eye openings and closings indicate the presence of a sleep/wake cycle unconsciously mediated by structures in the brain stem. Following emergence from coma, which may take days to months or more if it happens at all, patients typically show signs of wakefulness without conscious awareness – they are then in a so-called vegetative state (VS). For many this state becomes permanent, but some go on to a more recently described condition called the minimally conscious state (MCS), in which signs of conscious awareness can be detected by careful neurological examination (see Laureys & Tononi, 2009, chapter 14). A very few such persons ultimately progress to more or less full recovery, but another and particularly horrifying possible outcome is the “locked-in” state, in which a patient is fully conscious but has extremely little or no capacity for voluntary motor action. A famous modern example is that of Jean-Dominique Bauby, author of The Diving Bell and the Butterfly, who suffered a stroke to his upper brainstem and awakened 20 days later to find himself fully conscious but capable only of blinking his left eye. A tiny fraction of surgical patients find themselves in similarly terrifying conditions caused by the combination of muscle relaxants with insufficient levels of anesthetic agents (Kelly et al., 2007, p. 387 n. 18). (shrink)

Mistakes and errors happen in most spheres of human life and activity, including in medicine. A mistake can be as simple and benign as the collection of an extra and unnecessary urine sample. Or a mistake can cause serious but reversible harm, such as an overdose of insulin in a patient with diabetes, resulting in hypoglycemia, seizures, and coma. Or a mistake can result in serious and permanent damage for the patient, such as the failure to consider epiglottitis in (...) an initial differential diagnosis, resulting in a chronic vegetative state for a seven-year-old boy. Or a mistake can be an error in judgment that leads to a patient's death. (shrink)

Individuals who are profoundly mentally handicapped do not have the capacity to make their own decisions and also do not have a past record of decisions, from when they had capacity, to guide us in making decisions for them. They represent a difficult group, ethically, for surrogate decision making. Here I propose some guidelines, distinguishing between these patients and patients in a persistent vegetative state (PVS). As the life span of patients becomes shorter, or their level of consciousness (...) becomes permanently impaired, the presumption for comfort care should become an imperative, and the standard of evidence to justify any invasive intervention should become higher. For members of this population, who have no more ability to refuse treatment than to consent to it, protection of the vulnerable must mean allowing a peaceful death as well as a comfortable life. Reasonable legal safeguards are also proposed to allow improved end-of-life decisions to be made for this population. (shrink)