Behaviorally assessing residual consciousness of acutely comatose patients involves a high rate of false-negatives. That is, long-term behavioral assessment shows that 41% of vegetative state patients in fact have residual consciousness. Nonetheless, surrogates need to remove ventilation before the acute-phase passes away if they want to induce medico-legal death due to pragmatic factors, such as financial costs. So, surrogate decision-making regarding behaviorally nonresponsive acutely comatose patients involves a moral dilemma: should we ignore the (...) chance that patients have residual consciousness for the sake of pragmatic factors? This paper examines whether neural methods can resolve the moral dilemma. Neural methods are used to assess residual consciousness of behaviorally nonresponsive postcomatose patients. For instance, by instructing a vegetative state patient to imagine wiggling all of her toes, conscious- ness is ascribed if brain activities are localized in the supplementary motor area. Since the most extensive application of neural methods has been in chronic population, it is unclear whether such methods can resolve the moral dilemma. I argue that neural methods also involve a high rate of false-negatives because current tasks of neural methods are structurally misguided. Given the argument, there is no significant difference between behavioral and neural methods regarding the moral dilemma. (shrink)

The minimally conscious state presents unique ethical, legal, and decision-making challenges because of the combination of diminished awareness, phenomenal experience, and diminished or absent comm...

BackgroundFunctional neurodiagnostics could allow researchers and clinicians to distinguish more accurately between the unresponsive wakefulness syndrome and the minimally conscious state. It remains unclear how it informs surrogate decision-making.ObjectiveTo explore how the next of kin of patients with disorders of consciousness interpret the results of a functional neurodiagnostics measure and how/why their interpretations influence their attitudes towards medical decisions.Methods and SampleWe conducted problem-centered interviews with seven next of kin of patients with DOC who had undergone a functional (...) HD-EEG examination at a neurological rehabilitation center in Germany. The examination included an auditory oddball paradigm and a motor imagery task to detect hidden awareness. We analyzed the interview transcripts using structuring qualitative content analysis.ResultsRegardless of the diagnostic results, all participants were optimistic of the patients’ meaningful recovery. We hypothesize, that participants deal with the results of examinations according to their belief system. Thus, an unfavorable evaluation of the patient’s state had the potential to destabilize the participant’s belief system. To re-stabilize or to prevent the destabilization of their belief system, participants used different strategies. Participants accepted a “positive” HD-EEG result since it stabilized their belief system.ConclusionWe hypothesize, that a group of next of kin of patients with DOC deals with functional neurodiagnostics results on the basis of the result’s value and their high hope that the patient will recover meaningfully. A psychological mechanism seems to moderate the impact of functional neurodiagnostics on surrogate treatment decisions. (shrink)

Unrepresented patients are individuals who lack decision makingcapacity and have no family or friends to make medical decisions for them. This population is growing in number in the United States, particularly within emergency and intensive care settings. While some bioethical discussion has taken place in response to the question of who ought to make decisions for these patients, the issue of how surrogate medical decisions ought to be made for this population remains unexplored. In this paper, we argue (...) that standard applications of surrogate decision making principles in health care are not well suited to many unrepresented patients with long-term mental health diagnosis. We argue that when applied to this population, the substituted judgment standard, designed to preserve patient preferences and values, may lead to the exclusion of their preferences. We argue further that the application of the best interest standard runs the risk of leading to harmful cases of overtreatment or undertreatment. We offer an alternative interpretation of the best interest principle that is better able to promote the well-being of unrepresented patients, especially for those who lack capacity because of mental disorders. This alternative is based on the practices and principles of harm reduction and includes three components: emphasis on considering the expressed preferences of unrepresented patients, a focus on reducing harm as well as the delivery of clinical benefits, and a recognition of the importance of promoting trust. (shrink)

In the care of patients with disorders of consciousness (DOC), some ethical difficulties stem from the challenges of accurate diagnosis and the uncertainty of prognosis. Current neuroimaging research on these disorders could eventually improve the accuracy of diagnoses and prognoses and therefore change the context of end-of-life decision making. However, the perspective of healthcare professionals on these disorders remains poorly understood and may constitute an obstacle to the integration of research. We conducted a qualitative study involving healthcare professionals (...) from an acute care university medical center. A short questionnaire captured demographic data as well as the experience of participants with DOC patients. A semi-structured interview was used to explore attitudes toward ethical issues identified in a previous literature review. Qualitative content analysis of interviews was conducted with the NVivo software. Accurate diagnosis among DOC is often regarded as a challenge, but this was generally not the case for our participants because most reported high confidence in DOC diagnoses. However, participants reported struggling with prognosis, especially because of its essential role for end-of-life decision making and communication with families. Variability of opinion between healthcare professionals was reported and identified by some as a minor issue while others stressed how families struggle with different medical opinions. End-of-life decision making encompassed a large proportion of ethical challenges in these patients, and the removal of artificial nutrition and hydration created significant discomfort in a minority of participants. The concept of futility was subject to wide-ranging understandings with both favorable and unfavorable opinions. Our data suggest that to ensure the incorporation of new evidence-based advances, attention should be directed to the real-world practices and challenges of accurate diagnosis and prognosis. Given pervasive challenges in end-of-life care, we recommend improved training of healthcare professionals in the care of patients with DOC, particularly in end-of life care, understanding the context of decision making, and determining how to optimally integrate new neuroscience research on the care of patients with DOC. (shrink)

BackgroundIn the coming years, surrogate decision-making is expected to become highly prevalent in Japanese clinical practice. Further, there has been a recent increase in activities promoting advance care planning, which potentially affects the manner in which judgements are made by surrogate decision-makers. This study aims to clarify the grounds on which surrogate decision-makers in Japan base their judgements.MethodsIn this qualitative study, semi-structured interviews were conducted to examine the judgement grounds in surrogate (...) class='Hi'>decision-making for critical life-sustaining treatment choices in acute care hospitals.ResultsA total of 228 participants satisfied the inclusion criteria, and 15 were selected for interviews. We qualitatively analysed the content of 14 interview transcripts, excluding one that did not meet the inclusion criteria. Based on this analysis, we extracted 4 core categories, 17 categories, 35 subcategories, and 55 codes regarding judgement grounds in surrogate decision-making. The four core categories were as follows: patient preference-oriented factor (Type 1), patient interest-oriented factor (Type 2), family preference-oriented factor (Type 3), and balanced patient/family preference-oriented factor (Type 4). The Type 4 core category represented attempts to balance the preferences of the patient with those of the surrogate decision-maker.ConclusionsSurrogate decision-makers based their decisions on important aspects related to a patient’s life, and they considered not only the patient’s preferences and best interests but also their own preferences. As the need for surrogate decisions will increase in the future, decision-makers will need to consider judgement grounds from a more diverse perspective. (shrink)

With the improvements in medical care and resultant increase in life expectancy of the intellectually disabled, it will become more common for healthcare providers to be confronted by ethical dilemmas in the care of this patient population. Many of the dilemmas will focus on what is in the best interest of patients who have never been able to express their wishes with regard to medical and end-of-life care and who should be empowered to exercise surrogate medical decision-making (...) authority on their behalf. A case is presented that exemplifies the ethical and legal tensions surrounding surrogate medical decision making for acutely ill, never-competent, profoundly intellectually disabled patients. (shrink)

German legislation demands that decisions about the treatment of mentally incompetent patients require an ‘informed consent’. If this was not given by the patient him-/herself before he/she became incompetent, it has to be sought by the physician from a guardian, who has to be formally legitimized before. Additionally this surrogate has to seek the permission of a Court of Guardianship (Vormundschaftsgericht), if he/she intends to consent to interventions, which pose significant risks to the health or the life of the (...) person under his/her care. This includes ‘end-of-life decisions’. Deviations from this procedure are only allowed in acute emergencies or cases of ‘medical futility’. On the basis of epidemiological and demographical data it can be shown that the vast majority of surrogate decisions on incompetent patients in Germany is not covered by legally valid consent. Moreover, the data suggests that if consent were to be requested according to the legal regulations, both the legal and medical system could realistically never cope with the practical consequences of this. Additionally, empiric research has revealed serious deficits concerning medical ‘end of life-decisions’ and practical performance in palliative care. As a consequence a multidisciplinary discussion has developed in Germany about the reform of present legislation with respect to key-issues like• the assessment of mental competence• the options for exercising patient self-determination via advance directives and durable powers of attorney• the improvement of palliative care facilities,• the clarification of formal procedures for surrogate decision-making in health care and towards the end of life• and the possibilities and their limitations of controlling these decision-making processes ‘externally’ (e.g., by Guardianship Courts or committees).The authors discuss those proposals, which clearly dominate the present debate: They all aim to comply with the scientific basis of German law, jurisdiction and the European traditions of philosophy of health care and bioethics. (shrink)

The right to die has for decades been recognised for persons in a vegetative state, but there remains controversy about ending life-sustaining medical treatment for persons in the minimally conscious state. The controversy is rooted in assumptions about the moral significance of consciousness, and the value of life for patients who are conscious and not terminally ill. This paper evaluates these assumptions in light of evidence that generates concerns about quality of life in the MCS. It is argued that surrogates (...) should be permitted to make decisions to withdraw life-sustaining medical treatment from patients in the MCS. (shrink)

In this paper I address three problems posed by modern medical technology regarding comatose dying patients. The first is that physicians sometimes hide behind the tests for whole-brain death rather than make the necessary human decision. The second is that the tests themselves betray a metaphysical judgment about death that may be ontologically faulty. The third is that discretion used by physicians and patients and/or family in deciding to cease treatment when the whole-brain death criteria may not be (...) met are sometimes open to challenge. In each of these problems I find that the operative concept of death relates to life itself. This point is expanded by examining the uses of the word death in our language and culture. From these I formulate an initial ontology of death. In it, death is described through a relationship with life, rather than as an absence of life, of consciousness, awareness, or sensation. This ontology then leads to a proposal for an ethics of discretion about the discontinuation of treatment for comatose patients. (shrink)

The locked-in syndrome is a state of profound paralysis with preserved awareness of self and environment who typically results from a brain stem stroke. Although patients in LIS have great difficulty communicating, their consciousness, cognition, and language usually remain intact. Medical decision-making by LIS patients is compromised, not by cognitive impairment, but by severe communication impairment. Former systems of communication that permitted LIS patients to make only “yes” or “no” responses to questions was sufficient to validate their consent (...) for simple medical decisions but not for consequential medical decisions such as whether to refuse further life-sustaining therapy. Emerging technologies including computer-tracking assistance of retained partial motor function and brain-computer interfaces promise to improve the communication ability of LIS patients and, when better developed, will allow them to fully exercise their right to actively participate in consequential medical decisions about their own medical care. Although so-called “covert cognition” patients clinically diagnosed as vegetative state that are shown to be aware by functional neuroimaging maybe metaphorically considered locked-in, it is nosologically more coherent not to categorize them formally as LIS. (shrink)

The prelims comprise: References Additional Reading.

Mackenzie Graham has made an important contribution to the literature on decisionmaking for patients with disorders of consciousness. He argues, and I agree, that decisions for unresponsive patients who are known to retain some degree of covert awareness ought to focus on current interests, since such patients likely retain the kinds of mental capacities that in ordinary life command our current respect and attention. If he is right, then it is not appropriate to make decisions for such patients by appealing (...) to the values they had in the past, either the values expressed in an advance directive or the values recalled by a surrogate. There are two things I wish to add to the discussion. My first point is somewhat critical, for although I agree with his general conclusion about how, ideally, such decisions should be approached, I remain skeptical about whether his conclusion offers decisionmakers real practical help. The problem with these cases is that the evidence we have about the nature of the patient’s current interests is minimal or nonexistent. However—and this is important—Graham’s conclusion will be extremely relevant if in the future, our ability to communicate with such patients improves, as I hope it will. This leads to my second point. Graham’s conclusion illustrates a more general problem with our standard framework for decisionmaking for previously competent patients, a problem that has not been adequately recognized. So, in what follows, I explain the problem I see and offer some brief thoughts about solutions. (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)

In “Conscientious of the Conscious: Interactive Capacity as a Threshold Marker for Consciousness” (2013), Fischer and Truog argue that recent studies showing that some patients diagnosed as being in a vegetative state are in fact in a minimally conscious state raise various ethical questions for clinicians and family members. I argue that these findings raise a further ethical dilemma about how and whether to seek the involvement of the minimally conscious person herself in decisions about her care. There may be (...) a conflict between doing what is believed to accord with the patient’s prior stated wishes and/or her best interests, on the one hand, and respecting her own potential decision-making capacity and epistemic authority, on the other. (shrink)

Objective: The value of spontaneous EEG oscillations in distinguishing patients in vegetative and minimally conscious states was studied. Methods: We quantified dynamic repertoire of EEG oscillations in resting condition with closed eyes in patients in vegetative and minimally conscious states (VS and MCS). The exact composition of EEG oscillations was assessed by the probability-classification analysis of short-term EEG spectral patterns. Results: The probability of delta, theta and slow-alpha oscillations occurrence was smaller for patients in MCS than for VS. Additionally, only (...) patients in MCS demonstrated fast-alpha oscillation occurrence. Depending on the type and composition of EEG oscillations, the probability of their occurrence was either aetiology dependent or independent. The probability of EEG oscillations occurrence differentiated brain injuries with different aetiologies. Conclusions: Spontaneous EEG oscillations have a potential value in distinguishing patients in VS and MCS. Significance: This work may have implications for clinical care, rehabilitative programs and medical–legal decisions in patients with impaired consciousness states following coma due to acute brain injuries. (shrink)

Disorders of consciousness (DOC) are a family of related neurological syndromes characterized by deficits of varying degrees of wakefulness (e.g., sleep–wake cycles and arousal) or awareness (e.g., reacting to stimuli, interacting with the environment). Although coma rarely persists for more than a few weeks, some patients remain in a subsequent vegetative state or a minimally conscious state for months or years. Caring for patients with DOC raises ethical questions, but the perspectives of healthcare providers on these questions remain poorly documented. (...) We conducted a qualitative study involving healthcare providers with different backgrounds. Semistructured interviews were used to explore attitudes toward ethical issues. We found that contextual (e.g., time, resource allocation) and relational aspects (e.g., communication process, families) shaped how ethical challenges surfaced and were managed. We call for greater awareness of contextual, institutional and social aspects and focus on these issues in training programs. (shrink)

There are two main ways of understanding the function of surrogate decision making in a legal context: the Best Interests Standard and the Substituted Judgment Standard. First, we will argue that the Best Interests Standard is difficult to apply to unconscious patients. Application is difficult regardless of whether they have ever been conscious. Second, we will argue that if we accept the least problematic explanation of how unconscious patients can have interests, we are also obliged to accept (...) that the Substituted Judgment Standard can be coherently applied to patients who have never been conscious at the same extent as the Best Interests Standard. We then argue that acknowledging this result is important in order to show patients respect. (shrink)

Background Stroke is a worldwide problem with a limited number of approved treatments. Obtaining informed consent for acute stroke therapy is complicated by the breadth of information that must be communicated in a short period of time, the hectic nature of the emergency environment, the possible lack of understanding by the patient and/or family, and the critically time-sensitive nature of treatment for stroke. Complicating matters even further, patients are often unable to consent for themselves, placing the burden on surrogates to (...) infer patients’ wishes regarding treatment, and potentially limiting acute treatment by practitioners. Innovation An advance directive for acute stroke therapy was created, entitled COAST (Coordinating Options for Acute Stroke Therapy). This clinical initiative is being piloted at a large comprehensive stroke center, including the development of the advance directive form, integration of the form with electronic medical records, training healthcare providers, and outreach to patients. Conclusions COAST is an advance directive for stroke designed to make stroke care more efficient, optimize patients’ autonomy, improve the quality of healthcare, and streamline the ethical management of complex care decisions in acute stroke. The inherent benefit of COAST is in providing patients and their families with more information regarding stroke and its treatment options, allowing them to take a more active role in their care. (shrink)

In 2011 the English Court of Protection ruled that it would be unlawful to withdraw artificial nutrition and hydration from a woman, M, who had been in a minimally conscious state for 8 years. It was reported as the first English legal case concerning withdrawal of artificial nutrition and hydration from a patient in a minimally conscious state who was otherwise stable. In the absence of a valid and applicable advance decision refusing treatment, of other life-limiting pathology or excessively (...) burdensome suffering, the judgement makes it clear that the obligation on health professionals falls strongly in favour of preserving life. Although the Court sought to limit the judgement as closely as possible to the facts of the case, it is likely to have a significant impact on life-sustaining treatment decisions for people in states of low awareness. This paper outlines the main legal features of the judgement. (shrink)

The management of patients suffering from chronic disorders of consciousness inevitably raises important ethical questions about the end of life decisions. Some ethical positions claim respect of human life sacredness and the use of good medical practices require allowing DOC patients to live as long as possible, since no one can arbitrarily end either his/her or others’ life. On the other hand, some currents of thought claim respect of human life dignity, patients’ wishes, and the right of free choice entail (...) allowing the withdrawal of life sustaining therapy. This could happen when patients believe their own life to be not worth living, or if therapy is not very beneficial, excessively burdensome, or even futile. Indeed, the decision to withdraw therapies in a DOC patient should be guided by reliable information about DOC diagnosis and prognosis and on how the patient would wish to be treated in such a condition. Taking into account such issues, it would be possible to make the decision that more adequately fits a DOC patient’s best interest. This review aims to overview the range of ethical issues referring to end-of-life decisions in DOC patients, with regard to the thorny debate on the sacredness and dignity of human life. (shrink)

Volume 20, Issue 2, February 2020, Page 62-64.

The recent ruling from England on the case of M is one of very few worldwide to consider whether life-sustaining treatment, in the form of clinically assisted nutrition and hydration, should continue to be provided to a patient in a minimally conscious state. Formally concerned with the English law pertaining to precedent autonomy (specifically advance decision-making) and the best interests of the incapacitated patient, the judgment issued in M's case implicitly engages with three different accounts of the value (...) of human life, which respectively emphasise its self-determined, intrinsic and instrumental value. The judge appeared to be most persuaded by the intrinsic value of life and he concluded that treatment ought to continue. Assessing whether his approach or conclusion were ethically appropriate involves significant substantive and evidential questions regarding where the burden of proof should lie and what standard of proof should be required when decisions are to be made about the fates of patients inhabiting ‘twilight worlds’. (shrink)

The computer revolution has had an enormous effect on all aspects of the practice of medicine, yet little thought has been given to the role of social media in identifying treatment choices for incompetent patients. We are currently living in the ?Internet age? and many people have integrated social media into all aspects of their lives. As use becomes more prevalent, and as users age, social media are more likely to be viewed as a source of information regarding medical care (...) preferences. This article explores the ethical and legal issues raised by the use of social media in surrogate decision making. (shrink)

How shall we decide for others who cannot decide for themselves? And who—or what, in the case of artificial intelligence — should make the decision? The present issue of the journal tackles several interrelated topics, many of them having to do with surrogate decision making. For example, the feature article by Jardas et al 1 explores the potential use of artificial intelligence to predict incapacitated patients’ likely treatment preferences based on their sociodemographic characteristics, raising questions about (...) the means by which we come to decide for others. And a clinical ethics round table led by Wilkinson and Pillay2 examines the case of a premature baby on life support whose primary surrogate is herself incapacitated. Together, these examples force us to think more deeply about the meaning and significance of taken-for-granted concepts: respect for autonomy, substituted judgement, best interests. We’ll consider the baby first and then turn to AI. “Baby T” is a critically ill newborn delivered prematurely by emergency caesarean section. The mother had entered into a surrogacy arrangement with a same-sex male couple, the intended parents, who were to take over the baby’s care after birth—just as soon as a formal parental order could be obtained through the court. Until then, the birth mother, who had used her own eggs to conceive Baby T along with sperm from an unidentified donor, would have legal and ethical responsibility to decide about the baby’s care. Unfortunately, she too was in critical condition, having fallen unconscious prior to delivery due to a sudden brain haemorrhage. She remained unconscious, and thus incapacitated, during a crucial period in which time-sensitive decisions about Baby T’s care needed to be made, including whether to continue life support. Given the mother’s incapacity, who should …. (shrink)

Situations in which patients lack medical decision-making (MDM) capacity raise ethical challenges, especially when the patients decline care that their surrogate decision makers and/or clinicians agree is indicated. These patients are a vulnerable population and should receive treatment that is the standard of care, in line with their the values of their authentic self, just as any other patient would. But forcing treatment on patients who refuse it, even though they lack capacity, carries medical and psychological (...) risks to the patients and the hospital staff. It is also often impractical to force some treatments, especially in the long term. For example, independent of the ethical “should” question, how would one force hemodialysis for the rest of a patient’s life, or force a surgery that requires weeks of post-operative physical therapy? In this article we present a novel algorithm that can help clinicians with ethical and practical decision making, with the goals of achieving the best outcomes for patients and reducing moral distress for their caretakers and clinicians. (shrink)

My topic is a problem with our practice of surrogate decision-making in health care, namely, the problem of the surrogate who is not doing her job—the surrogate who cannot be reached or the surrogate who seems to refuse to understand or to be unable to understand the clinical situation. The analysis raises a question about the surrogate who simply disagrees with the medical team. One might think that such a surrogate is doing (...) her job—the team just doesn't like how she is doing it. My analysis raises the question of whether she should be overridden. In approaching this problem, I focus not on the range of difficulties in practice but on the underlying moral conceptual issue. My concern will be to show that the moral values that underpin patient decision-making are fundamentally different from those that underpin surrogate decision-making. Identifying the distinctions will set parameters for any successful solution to the “Who should decide?” question. A patient has a specific kind of moral right to make her own medical decisions. A surrogate has no analogous moral right to decide for someone else. We want the surrogate to make the decision because we believe that she has a relevant epistemological advantage over anyone else on the scene. If and when she has no such advantage or if she refuses or is unable to use it, then there might not be sufficient reason to let her be the decision-maker. (shrink)

Patients can be harmed by a religiously motivated surrogate decision maker whose decisions are contrary to the standard of care; therefore, surrogate decision making should be held to a high standard. Stewart Eskew and Christopher Meyers proposed a two-part rule for deciding which religiously based decisions to honor: (1) a secular reason condition and (2) a rationality condition. The second condition is based on a coherence theory of rationality, which they claim is accessible, generous, and (...) culturally sensitive. In this article, I will propose strengthening the rationality condition by grounding it in a theory of intellectual virtue, which is both rigorous and culturally sensitive. (shrink)

ABSTRACT In this paper, I address some of the shortcomings of established clinical ethics centring on personal autonomy and consent and what I label the Doctrine of Respecting Personal Autonomy in Healthcare. I discuss two implications of this doctrine: 1) the practice for treating patients who are considered to have borderline decision‐making competence and 2) the practice of surrogate decision‐making in general. I argue that none of these practices are currently aligned with respectful treatment of (...) vulnerable individuals. Because of ‘structural arbitrariness’ in the whole process of how we assess decision‐making competence, this area is open to disrespectful treatment of people. The practice of surrogate decision‐ making on the basis of a single person's judgment is arguably not consistent with ethical and political requirements derived from the doctrine itself. In response to the inadequacies of the doctrine, I suggest a framework for reasonableness in surrogate decision‐making which might allow practice to avoid the problems above. I conclude by suggesting an extended concept of Patient Autonomy which integrates both personal autonomy and the regulative idea of morality that is required by reasonableness in deciding for non‐competent others. (shrink)

In this paper, I address some of the shortcomings of established clinical ethics centring on personal autonomy and consent and what I label the Doctrine of Respecting Personal Autonomy in Healthcare. I discuss two implications of this doctrine: 1) the practice for treating patients who are considered to have borderline decision-making competence and 2) the practice of surrogate decision-making in general. I argue that none of these practices are currently aligned with respectful treatment of vulnerable (...) individuals. Because of ‘structural arbitrariness’ in the whole process of how we assess decision-making competence, this area is open to disrespectful treatment of people. The practice of surrogate decision- making on the basis of a single person's judgment is arguably not consistent with ethical and political requirements derived from the doctrine itself. In response to the inadequacies of the doctrine, I suggest a framework for reasonableness in surrogate decision-making which might allow practice to avoid the problems above. I conclude by suggesting an extended concept of Patient Autonomy which integrates both personal autonomy and the regulative idea of morality that is required by reasonableness in deciding for non-competent others. (shrink)

A recent qualitative study published in Neuroethics by Schembs and colleagues explores how functional neurodiagnostics of consciousness inform surrogate decision making in cases of disorders of consciousness. In this commentary, we argue that the chosen methodology significantly limits the scope of the potential conclusions and suggest an embedded ethnographic approach of co-presence as an alternative.

How should we treat patients diagnosed with disorders of consciousness, such as patients diagnosed as minimally conscious or vegetative (yet who very well may be conscious)? Fischer and Truog (2017) argue that the consciousness and equal rights of these patients are relatively unimportant when deciding how we should treat them. That is, we should deemphasize their consciousness and equal rights and instead privilege the value judgments of the family/surrogate. We disagree. Drawing upon precautionary reasoning that we develop in Braddock (...) (2017), we contend that the consciousness and equal rights of these patients should be important factors in medical decision making, at least as important as the value judgments of the family/surrogate. (shrink)

This book is the most comprehensive treatment available of one of the most urgent - and yet in some respects most neglected - problems in bioethics: decision-making for incompetents. Part I develops a general theory for making treatment and care decisions for patients who are not competent to decide for themselves. It provides an in-depth analysis of competence, articulates and defends a coherent set of principles to specify suitable surrogate decisionmakers and to guide their choices, examines (...) the value of advance directives, and investigates the role that considerations of cost ought to play in decisions concerning incompetents. Part II applies this theoretical framework to the distinctive problems of three important classes of individuals, many of whom are incompetent: minors, the elderly and psychiatric patients. The authors' approach combines a probing analysis of fundamental issues in ethical theory with a sensitive awareness of the concrete realities of health care institutions and the highly personal and individual character of difficult practical problems. Its broad scope will appeal to health professionals, moral philosophers and lawyers alike. (shrink)

Some patients awaken from their coma but only show reflex motor activity. This condition of wakeful (eyes open) unawareness is called the vegetative state. In 2002, a new clinical entity coined ‘‘minimally conscious state’’ defined patients who show more than reflex responsiveness but remain unable to communicate their thoughts and feelings. Emergence from the minimally conscious state is defined by functional recovery of verbal or nonverbal communication.1 Our empirical medical definitions aim to propose clearcut borders separating disorders of consciousness such (...) as coma, vegetative state and minimally conscious state but clinical reality shows that these boundaries can often be fuzzy (fig 1). Recent clinical, electrophysiological and neuroimaging studies are shedding light on these challenging limits of consciousness encountered following severe acute brain damage. At the patient’s bedside, it is very challenging to differentiate reflex or automatic motor behaviour from movements indicating signs of consciousness, and hence some minimally conscious patients might be misdiagnosed as being vegetative. For some motor responses (eg, blinking to visual threat, brief fixation, normal flexion response to pain, etc) it remains unclear whether they truly are voluntary or willed because we lack convincing scientific evidence. We also lack consensus on how to practically assess some of these behavioural responses. For example, there is no agreement on what stimulus to employ in the assessment of visual pursuit movements— often one of the first clinical signs heralding the transition from the vegetative to the minimally conscious state. Vanhaudenhuyse and colleagues2 recently studied visual pursuit in 51 post-comatose patients comparing eye tracking of a moving object, person or mirror. It was shown that more.. (shrink)

As research into Alzheimer's disease and other dementing disorders becomes more complex, risky, invasive, and commonplace, the need intensifies for discussion of the ethics of involving persons with dementia in research, specifically research of greater than minimal risk and of no expected direct benefit to the subject. Reviewing such studies pushes our traditional analysis tools to their limits. Simply balancing and prioritizing the basic ethical principles of respect for persons, beneficence, and justice that serves us well in reviewing the (...) vast majority of studies is inadequate when reviewing research of such ethical complexities as studies with marked risks and no expectation of direct benefit to subjects unable to consent or withdraw. Moving up to the level of theory, placing these principles within the commonly applied frameworks of consequentialism, deontology, or virtue ethics bring us no closer to reducing the tensions such research creates between upholding individual autonomy and advancing society's need to learn how to treat and cure these devastating diseases. What is needed is the introduction of more contemporary moral analyses. Specifically, we need to become more inclusive of the diversity of values perspectives of our general citizenry. In more theoretical terms, we ought to elevate to a more central role a communitarian perspective and a feminist ethics emphasis on relationships and context as we rush to keep in step, ethically, with this rapidly expanding area of medical inquiry. (shrink)

BackgroundInstances of surrogate decision-making are expected to increase with the rise in hospitalised older adults in Japan. Few large-scale studies have comprehensively examined the entire surrogate decision-making process. This study aimed to gather information to assess the current state of surrogate decision-making in Japan.MethodsA cross-sectional survey was conducted using online questionnaires. A total of 1000 surrogate decision-makers responded to the questionnaire. We examined the characteristics of surrogate decision-makers (...) and patients, content of surrogate decision-making meeting regarding life-sustaining treatment between the doctors and surrogate decision-makers, extent of involvement of the various parties in the surrogate decision-making process, judgement grounds for surrogate decision-making, and frequency of involvement in the surrogate decision-making process.ResultsOf the participants, 70.5% were male and 48.3% were eldest sons. Only 7.6% of the patients had left a written record of their preferences and 48.8% of the surrogates reported no knowledge of the patient having expressed their prior intentions regarding medical care in any form. Respondents indicated that their family meetings with healthcare professionals mostly included the information recommended by guidelines in a surrogate decision-making meeting in Japan. Most participants reported a good understanding of the meeting content. Although many participants based their decisions on multiple grounds, surrogates’ considerations may not adequately reflect respect for patient autonomy in Japan. Specifically, the eldest son considered his own preference more frequently than that of the other surrogate decision-makers. In 26.1% of the cases, either zero or one family meeting with healthcare professionals was held. In these cases, significantly fewer decisions involved the participation of healthcare professionals other than the doctor compared to cases with multiple meetings.ConclusionsSurrogate decisions in Japan are most commonly made by eldest sons and may not frequently consider the perspectives of other surrogates. The finding that patient preferences were rarely known suggests a role for increased advance care planning. (shrink)

Incompetent patients need to have someone else make decisions on their behalf. According to the Substituted Judgment Standard the surrogate decision maker ought to make the decision that the patient would have made, had he or she been competent. Objections have been raised against this traditional construal of the standard on the grounds that it involves flawed counterfactual reasoning, and amendments have been suggested within the framework of possible worlds semantics. The paper shows that while this approach (...) may circumvent the alleged problem, the way it has so far been elaborated reflects insufficient understanding of the moral underpinnings of the idea of substituted judgment. Proper recognition of these moral underpinnings has potentially far-reaching implications for our normative assumptions about accuracy and objectivity in surrogate decision making. (shrink)

This paper will discuss why and how social network sites ought to be used in surrogate decision making (SDM), with focus on a context like Singapore in which substituted judgment is incorporated as part of best interest assessment for SDM, as guided by the Code of Practice for making decisions for those lacking mental capacity under the Mental Capacity Act (2008). Specifically, the paper will argue that the Code of Practice already supports an ethical obligation, as (...) part of a patient-centred care approach, to look for and appraise social network site (SNS) as a source of information for best interest decision making. As an important preliminary, the paper will draw on Berg’s arguments to support the use of SNS information as a resource for SDM. It will also supplement her account for how SNS information ought to be weighed against or considered alongside other evidence of patient preference or wishes, such as advance directives and anecdotal accounts by relatives. (shrink)

The family is the exemplar community of Chinese society. This essay explores how Chinese communitarian norms, expressed in thick commitments to the authority and autonomy of the family, are central to contemporary Chinese bioethics. In particular, it focuses on the issue of surrogate decision making to illustrate the Confucian family-grounded communitarian bioethics. The essay first describes the way in which the family, in Chinese bioethics, functions as a whole to provide consent for significant medical and surgical interventions (...) when a patient has lost decision-making capacity. It is argued that the practice of not having an established order for surrogate decision makers (e.g., spouse, children, and then parents), as it is done in the United States, reflects the acknowledgment that the family as a social reality cannot be reduced to a stereotype of the appropriate order of default decision makers. This description of the family as being in authority to make surrogate decisions for an incompetent family member is enriched by an elaboration of the differences among the concepts of patient autonomy, family autonomy, and moral autonomy. The Chinese model, as well as the Confucian communitarian life of families, engages a family autonomy that is supported by a Confucian understanding of moral autonomy, rather than individual autonomy. Finally, the issue of possible conflicts between patient and family interests in relation to a patient’s past wishes in the Chinese model is addressed in light of the role of the physician. (shrink)

In the United States, there is no consensus about who should make decisions in acute but non-emergent situations for incapacitated patients who lack surrogates. For more than a decade, our academic medical center has utilized community volunteers from the hospital ethics committee to engage in shared decision-making with the medical providers for these patients. In order to add a different point of view and minimize conflict of interest, the volunteers are non-clinicians who are not employed by the hospital. (...) Using case examples and interviews with the community members, this paper describes how the protocol has translated into practice over the years since its inception. Members reported comfort with the role as well as satisfaction with the thoroughness of their discussions with the medical team. They acknowledged feelings of moral uncertainty, but expressed confidence in the process. Questions raised by the experience are discussed. Overall, the protocol has provided oversight, transparency, and protection from conflict of interest to the decision-making process for this vulnerable patient population. (shrink)

Background: Patients in a vegetative state pose problems in diagnosis, prognosis and treatment. Currently, no prognostic markers predict the chance of recovery, which has serious consequences, especially in end-of-life decision-making. Objective: We aimed to assess an objective measurement of prognosis using advanced electroencephalography (EEG). Methods: EEG data (19 channels) were collected in 14 patients who were diagnosed to be persistently vegetative based on repeated clinical evaluations at 3 months following brain damage. EEG structure parameters (amplitude, duration and variability (...) within quasi-stationary segments, as well as the spatial synchrony between such segments and the strength of this synchrony) were used to predict recovery of consciousness 3 months later. Results: The number and strength of cortical functional connections between EEG segments were higher in patients who recovered consciousness (P < .05 – P < .001) compared with those who did not recover. Linear regression analysis confirms that EEG structure parameters are capable of predicting (P = .0025) recovery of consciousness 6 months post-injury, whereas the same analysis failed to significantly predict patient outcome based on aspects of their clinical history alone (P = .629) or conventional EEG spectrum power (P = .473). Conclusions: The result of this preliminary study demonstrates that structural strategy of EEG analysis is better suited for providing prognosis of consciousness recovery than existing methods of clinical assessment and of conventional EEG. Our results may be a starting point for developing reliable prognosticators in patients who are in vegetative state, with the potential to improve their day-to-day management, quality of life, and access to early interventions. (shrink)

Daniel Brudney's clear-headed analysis, in this issue of the Hastings Center Report, of the difference between a patient's and a surrogate's right to make medical treatment decisions contributes to a longstanding conversation in bioethics. Brudney offers an epistemological and a moral argument for the patient's and the surrogate's right to decide. The epistemological argument is the same for both parties: the patient has a right to decide because she is presumed to know her own interests better than anyone (...) else, and the surrogate is entitled to make decisions because she knows the patient better than anyone else. However, argues Brudney, the moral arguments are not parallel. The patient's moral right to decide for herself is an exercise of autonomy, but the only ground for the responsibility held by the surrogate, says Brudney, is that she knows the patient better than the health care professionals do. If in fact that's not the case, then she forfeits her right to be the patient's surrogate. For all the clarity and force of his argument, I think Brudney may be barking up the wrong tree. In cases of proxy decision-making, it's intimacy, not knowledge, that does the heavy moral lifting. (shrink)

The neonatal nurse forges a unique partnership with parents of a critically ill infant who are often, unexpectedly, exposed to the bewildering and complex environment that is neonatal intensive care, helping navigate them through this unchartered territory. Our role is multifaceted, with the primary focus of providing care in the best interests of our patients.1 This is realised through the provision of high-quality evidence-based care, advocating for the needs of the baby and family, and when required acting as a linchpin (...) bridging communication channels between medical and nursing teams, other allied health professionals, and the family.1 2 Ordinarily, the birth of an extremely preterm infant is a distressing, life-changing event for parents; this is further complicated by a number of additional factors in this complex scenario3. (shrink)

The phenomenon whereby severely disabled persons self-report a higher than expected level of subjective well-being is called the “disability paradox.” One explanation for the paradox among brain injury survivors is “response shift,” an adjustment of one’s values, expectations, and perspective in the aftermath of a life-altering, disabling injury. The high level of subjective well-being appears paradoxical when viewed from the perspective of the non-disabled, who presume that those with severe disabilities experience a quality of life so poor that it might (...) make their lives not worth living. This presumption has profound consequences, for it may inform end-of-life choices made in advance directives, or influence decisions made by surrogates on behalf of persons who are unable to direct their own medical treatment. -/- Peterson et al propose a cautious, well-considered plan to use fMRI-based brain-computer interfaces to assess the decision making capacity of covertly aware, behaviorally non-responsive individuals who retain high levels of preserved cognition. Their plan, if it succeeds, could eventually restore autonomy and empower some severely disabled persons, allowing them to participate in clinical decision making. Peterson et al discuss possible in-principle objections to their proposal, among them the “argument from psychological health,” and the “changing sets of values” objection. These objections both presume that deviations from a pre-injury norm could indicate diminished decision making capacity. This presumption threatens the autonomy of the patient who is capable of making decisions, but whose post-injury decisions appear to diverge from pre-injury preferences or values. In light of the potential for response shift, and the disability paradox, it should not be inferred that changes in values or preferences are unreflective of the true current preferences of a brain-injured person, nor are they conclusive evidence of diminished capacity. Presuming diminished capacity on the basis of unexpected or unconventional preferences has, in the past, been used to disempower patients whose autonomy and capacity would not have been doubted had they made choices that accorded with the expectations or values of others. We must be cautious, and vigilant, to prevent similarly diminishing the autonomy of covertly aware, behaviorally non-responsive individuals on the basis of empirically and ethically questionable inferences about their decision making capacity. (shrink)

Berger (forthcoming) states that moral intimacy is important in applying the best interests standard. But what he calls moral intimacy requires that someone has overcome epistemic burdens needed to represent the patient. We argue elsewhere that good surrogate decision-making is first and foremost a matter of overcoming epistemic burdens, or those obstacles that stand in the way of a surrogate decision-maker knowing what a patient wants and how to satisfy those preferences. Berger’s notion of moral (...) intimacy depends on epistemic intimacy: the fact that a surrogate's epistemic burdens with respect to the best interests of the incapacitated patient have been adequately surmounted, plus some other feature. Thus, where a particular patient-surrogate relationship fails to be morally intimate, what is lacking is either epistemic intimacy or this second feature. Furthermore, Berger uses the notion of moral intimacy as an explanans for the application of the best interests standard. We argue that the notions of epistemic intimacy and epistemic burdens not only help to explain the notion of moral intimacy, but also better explain the application of the best interests standard. Given the role of epistemic burdens and the epistemic intimacy that overcoming them enables, bioethicists and physicians should consider a surrogate’s epistemic standing relative to the patient’s best interests before pronouncing on the former’s ethical probity. (shrink)

After severe brain injury, one of the key challenges for medical doctors is to determine the patient’s prognosis. Who will do well? Who will not do well? Physicians need to know this, and families need to do this too, to address choices regarding the continuation of life supporting therapies. However, current prognostication methods are insufficient to provide a reliable prognosis. -/- Functional Magnetic Resonance Imaging (MRI) holds considerable promise for improving the accuracy of prognosis in acute brain injury patients. Nonetheless, (...) research on functional MRI in the intensive care unit context is ethically challenging. These studies raise several ethical issues that have not been addressed so far. In this article, Prof. Charles Weijer and his co-workers provide a framework for researchers and ethics committees to design and review these studies in an ethically sound way. (shrink)