Here we describe how more important findings were obtained in a delirium study by using an informal assessment of mental capacity, and, in those who lacked capacity, obtaining consent later when or if capacity returned or a proxy was found. From a total of 233 patients 23 patients lacked capacity as judged by our informal capacity judgment and 210 did not. Of those who lacked capacity, 13 agreed to enter in the study. Six of them regained capacity later. When these (...) 13 participants were excluded from analysis, significant findings were no longer evident. These results show that by the inclusion of subjects who lacked capacity the results of analyses of the condition from whish they suffer are altered. We suggest that this approach to the study of delirium is more ethical than the usual system of strict exclusion of people who lack capacity to give consent and for whom assent is not available. (shrink)

In this article, it is claimed that the protective provisions for adults with impaired decision-making capacity are misguided, insofar as they do not conclusively state whether research on this group should be permitted only as an exception, and as they arbitrarily allow for some groups to benefit from such research while others will not. Moreover, the presumed or former will of the subject is given insufficient weight, and the minimal risk standard does not make sense in this context. Because of (...) these problems, the present guidelines allow for the possibility of vulnerable people being exploited, something that is hidden behind a guise of solidarity. Instead we need to address the real issues at stake by rewriting the present statutes. It is suggested that new guidelines should be in some continuity with earlier efforts. However, in order to protect these subjects there is additional need for appointed representatives who monitor research and for legal obligations to compensate for any injuries suffered. Without these or similar measures we won't have an adequate system in place for the protection of non-benefiting persons who are unable to consent to research. (shrink)

In the present super-aging society, issues concerning what treatment should be given for incapacitated patients have become more important than ever before. This paper discusses whether or not an incapacitated patient’s refusal of treatment should be respected. The authors present a complete hypothetical scenario involving a 75-year-old moderately demented man suffering from malignant lymphoma. Of primary importance are the respect for patient dignity and the protection of human rights. Acts such as coercion, disregard, restriction, and surveillance can be (...) unethical in many situations. The effectiveness of chemotherapy for malignant lymphoma and its adverse outcomes could offset each other, leaving no net benefits for the patient. The patient is vulnerable and this very vulnerability requires the utmost protection and care. However, protection must be sensitive and comprehensive and the protection of his life at the expense of many other valuable factors is not justifiable. Coercing unwanted treatment would be intrusion, not protection, because of the physical and psychological suffering. When the refusal is explicit, consistent, and stable enough, it should to be viewed as true and current desire. Due to moderate dementia, the patient has lost his rational capacity, but his emotional capacity remains. If the remaining portion of his personality is rooted in his feelings, these feelings should be respected as much as possible. Those involved in the care of the patients who refuse treatment should not force them to undergo it simply on the grounds that it may be an established standard in their own country. What must be asked first is whether or not forced treatment would promote the patient’s subjective well-being. Additionally, treatment decisions should not be distorted due to the selfishness or discriminatory feelings of those involved in his care. In situations in which patients lack decisionmaking capacities, overriding the patients’ refusals of treatment should be regarded as an exception, rather than a standard course of action. Even in patients who are incapacitated, treatment refusal could stem from the feelings of the individual. Their subjective wellbeing would not be improved through close observation, restraint, denial, and coercion, the purpose of which they does not understand. (shrink)

When children and incapacitated adults are enrolled in research that cannot directly benefit them, they can be exposed to no more than “minimal” risks, according to guidelines accepted around the world. We need a new standard for what “minimal” risks are, however—one that recognizes that participating in nonbeneficial research is like participating in a charitable activity. Such a standard appears likely to provide more stringent protections for these vulnerable populations.

What the Doctor Didn’t Say: The Hidden Truth About Medical Research, by Jerry Menikoff , is an insightful, clear, and engaging overview of some of the ethical and legal challenges of clinical research. The book contains thoughtful discussions of legal protections for research subjects, medical malpractice law, informed consent, pediatric research, emergency research, research on decisionally incapacitated adults, payment to research subjects, and other important topics. It also makes a number of stunning revelations concerning the practice of (...) clinical research and provocative proposals for legal and policy reform. (shrink)

In the United States, patients who lose the ability to make their own medical decisions are subject to the laws of their respective states. Laws governing advance directives and physician orders for life-sustaining therapies (POLST), and establishing a surrogate in the absence of an advance directive, vary substantially by jurisdiction. This article traces those laws from their origins, describes current practices and challenges with their application to patient care, and considers future avenues for ethics research and legislative reform.

Children and adults with dementia are vulnerable populations. Both groups are also relatively seldom included in biomedical research. However, including them in clinical trials is necessary, since both groups are in need of scientific innovation and new therapies. Their dependence and limited decision‐making capacities increase their vulnerability, necessitating extra precautions when including them in clinical trials. Beside these similarities there are also many differences between the groups. The most obvious one is that children have an entire life ahead of them (...) and will become persons with certain ideals and preferences, while adults with dementia have lived a life in which they have expressed their ideals and preferences. Some of the available research guidelines recognize these differences, setting one list of specific requirements for groups of incapacitated adults and another list for children. Other documents, however, do not differentiate and only set requirements for subjects unable to consent as a single category of subjects.In this article we analyse to what extent the similarities and differences between the two groups are represented in legal documents and ethical guidelines. The article presents an overview and an analysis of the requirements for doing research with children and dementia patients. We conclude with suggestions about how to better incorporate the morally relevant aspects of these two groups in legislation and ethical guidelines. (shrink)

Children and adults with dementia are vulnerable populations. Both groups are also relatively seldom included in biomedical research. However, including them in clinical trials is necessary, since both groups are in need of scientific innovation and new therapies. Their dependence and limited decision-making capacities increase their vulnerability, necessitating extra precautions when including them in clinical trials. Beside these similarities there are also many differences between the groups. The most obvious one is that children have an entire life ahead of them (...) and will become persons with certain ideals and preferences, while adults with dementia have lived a life in which they have expressed their ideals and preferences. Some of the available research guidelines recognize these differences, setting one list of specific requirements for groups of incapacitated adults and another list for children. Other documents, however, do not differentiate and only set requirements for subjects unable to consent as a single category of subjects. In this article we analyse to what extent the similarities and differences between the two groups are represented in legal documents and ethical guidelines. The article presents an overview and an analysis of the requirements for doing research with children and dementia patients. We conclude with suggestions about how to better incorporate the morally relevant aspects of these two groups in legislation and ethical guidelines. (shrink)

BackgroundAdvance research directives (ARD) have been suggested as a means by which to facilitate research with incapacitated subjects, in particular in the context of dementia research. However, established disclosure requirements for study participation raise an ethical problem for the application of ARDs: While regular consent procedures call for detailed information on a specific study (“token disclosure”), ARDs can typically only include generic information (“type disclosure”). The introduction of ARDs could thus establish a double standard in the sense that (...) within the context of ARDs, type disclosure would be considered sufficient, while beyond this context, token disclosure would remain necessary.Main bodyThis paper provides an ethical analysis of ARDs, taking into account the results of numerous empirical studies that have been performed so far. It will be argued that a revised understanding of informed consent can allow for context-sensitive disclosure standards. As a consequence, ARDs that include type disclosure can be acceptable under suitable circumstances. Such an approach raises a number of objections. A thorough examination shows, however, that they are not sufficient to justify a rejection of the approach.ConclusionThe approach presented in this paper avoids introducing a double standard. It is, therefore, more suitable for the implementation of ARDs than established approaches. (shrink)

The European Clinical Trials Directive was issued in 2001 and aimed to simplify and harmonise the regulatory framework of clinical trials throughout Europe, thus stimulating European research. However, significant complexity and inconsistency remains due to disparate interpretation by EU member states. Critical care research has been particularly impacted due to variable and often restrictive consenting procedures for incapacitated subjects, with some countries requiring a court-appointed representative, while others recognise consent from family members and occasionally professional representatives. Furthermore, the (...) absence of a waiver of consent threatened to put an end to emergency research in Europe and was met with varied responses. Approval procedures by ethics committees are equally inconsistent, particularly those relating to provision of a single opinion for multi-centre trials. Although evidence is somewhat mixed, this complexity as well as a general increase in administrative and financial burden following the Directive has been shown to cause a reduction in clinical trial activity in Europe, particularly academic trials. We aim to clarify some of these inconsistent procedures, particularly those relating to informed consent of incapacitated subjects, as well as discussing some general weaknesses and possible improvements of the Directive ahead of its planned revision in 2011. (shrink)

BackgroundMany of the important elements of a valid informed consent – comprehension, voluntariness, and capacity – can be compromised or unmet in the context of psychiatric research. The inability to protect their own interests puts mentally ill subjects at an increased likelihood of being wronged or harmed and makes them particularly vulnerable in the context of clinical research. Therefore, they are due extra protection. Sometimes, these additional safeguards can significantly limit the possibilities for research involving subjects deemed unable (...) to consent due to their mental illness. Montenegro, a middle-income country in Southern-Eastern Europe, goes so far in their policy to protect these subjects from harms of research, as to ban all biomedical research on mentally ill persons who are unable to provide consent.Main bodyMental health research is often neglected and very low on the list of health research priorities, especially in low- and middle-income countries. Despite the fact that mental health disorders are among leading causes of disability, the need for evidence-based services and interventions for those affected remains unmet.To exclude all members of a certain group of subjects seems extremely restrictive and unnecessary. Such a policy is discriminatory and unethical, because it inflicts further harms and exclusion of those patients from participation in society. This unjust exclusion policy obstructs research of certain psychiatric disorders and implies that new treatments for conditions that directly affect these incapacitated subjects will not be developed.ConclusionsScientific and clinical development must not be precluded by overly restrictive, discriminatory and unjust practices, such as the normative ban on research on decisionally-impaired mentally ill subjects. Rather, there should be a regulative framework that ensures that those who cannot consent for themselves are respected and protected in research, the anticipated benefits maximized, risks minimized, their autonomy recognized and extended. These patient-subjects must be appropriately included unless there is a clear and compelling rationale and justification that inclusion is inappropriate with respect to the health of the participants or the purpose of the research. (shrink)

Emergency medicine research requires the enrollment of subjects with varying decision-making capacities, including capable adults, adults incapacitated by illness or injury, and children. These different categories of subjects are protected by multiple federal regulations. These include the federal Common Rule, the Department of Health and Human Services (DHHS) regulations for pediatric research, and the Food and Drug Administration's (FDA) Final Rule for the Exception from the Requirements of Informed Consent in Emergency Situations. Investigators should be familiar with (...) the relevant federal research regulations to optimally protect vulnerable research subjects, and to facilitate the institutional review board (IRB) review process. IRB members face particular challenges in reviewing emergency research. No regulations exist for research enrolling incapacitated subjects using proxy consent. The wording of the Final Rule may not optimally protect vulnerable subjects. It is also difficult to apply conflicting regulations to a single study that enrolls subjects with differing decision-making capacities. This article is intended as a guide for emergency researchers and IRB members who review emergency research. It reviews the elements of Federal Regulations that apply to consent, subject selection, privacy protection, and the analysis of risks and benefits in all emergency research. It explores the challenges for IRB review listed above, and offers potential solutions to these problems. (shrink)

Part of the standard protection of decisionally incapacitated research subjects is a prohibition against enrolling them unless surrogate decision makers authorize it. A common view is that surrogates primarily ought to make their decisions based on what the decisionally incapacitated subject would have wanted regarding research participation. However, empirical studies indicate that surrogate predictions about such preferences are not very accurate. The focus of this article is the significance of surrogate accuracy in the context of research that (...) is not expected to benefit the research subject. We identify three morally relevant asymmetries between being enrolled and not being enrolled in such non-beneficial research, and conclude that when there is a non-negligible probability that surrogates’ predictions are wrong, it will generally be better to err on the side of not authorizing enrollment. (shrink)

Background: Family members are often required to act as substitute decision-makers when health care or research participation decisions must be made for an incapacitated relative. Yet most families are unable to accurately predict older adult preferences regarding future health care and willingness to engage in research studies. Discussion and documentation of preferences could improve proxies' abilities to decide for their loved ones. This trial assesses the efficacy of an advance planning intervention in improving the accuracy of substitute decision-making and (...) increasing the frequency of documented preferences for health care and research. It also investigates the financial impact on the healthcare system of improving substitute decision-making. Methods/DesignDyads (n = 240) comprising an older adult and his/her self-selected proxy are randomly allocated to the experimental or control group, after stratification for type of designated proxy and self-report of prior documentation of healthcare preferences. At baseline, clinical and research vignettes are used to elicit older adult preferences and assess the ability of their proxy to predict those preferences. Responses are elicited under four health states, ranging from the subject's current health state to severe dementia. For each state, we estimated the public costs of the healthcare services that would typically be provided to a patient under these scenarios. Experimental dyads are visited at home, twice, by a specially trained facilitator who communicates the dyad-specific results of the concordance assessment, helps older adults convey their wishes to their proxies, and offers assistance in completing a guide entitled My Preferences that we designed specifically for that purpose. In between these meetings, experimental dyads attend a group information session about My Preferences. Control dyads attend three monthly workshops aimed at promoting healthy behaviors. Concordance assessments are repeated at the end of the intervention and 6 months later to assess improvement in predictive accuracy and cost savings, if any. Copies of completed guides are made at the time of these assessments. DiscussionThis study will determine whether the tested intervention guides proxies in making decisions that concur with those of older adults, motivates the latter to record their wishes in writing, and yields savings for the healthcare system. Trial RegistrationISRCTN89993391. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:The Patient Self-Determination ActElizabeth Leibold McCloskey (bio)What are the ethics of extending the length of life? We know that we cannot artificially end life (Thou Shalt not Kill), but how about artificially extending life? Is that always good, sometimes good?... In ethics, is keeping people alive the highest good? Should our priority be to keep people breathing?... What does basic religious ethics say about this?(John C. Danforth, letter to (...) the author, 19 August 1989)The Patient Self-Determination Act, signed into law as part of the Omnibus Budget Reconciliation Act of 1990 (OBRA '90) last November, marks the first time that Congress has passed legislation concerning the ethics of life-sustaining medical treatment. The bill was spearheaded by Senator John C. Danforth (RMO), who has a special interest in this area. An Episcopal priest, Danforth was formerly an assistant chaplain at New York's Memorial Sloan-Kettering Cancer Center and now sits as a senior member of the Senate Finance Committee, which oversees Medicare and Medicaid. Although Senator Danforth's legislative initiative was not a result of the Cruzan case, it was in his state of Missouri that the U.S. Supreme Court case involving removal of Nancy Cruzan's feeding tube arose (Cruzan v. Director of Missouri Department of Health, U.S. Supreme Court, 58 LW 4916, 26 June 1990). From his unique vantage point, he felt it was time to craft a legislative response to some of the difficult issues surrounding prolongation of life.The short answer to Senator Danforth's questions about when to artificially extend life is simple enough: people must be free to determine that for themselves. Common law and common sense dictate such a conclusion; living will and health care proxy statutes, enacted in almost every state, codify that right. The Catholic moral tradition teaches that one is not morally obligated to use extraordinary means to prolong life, a tradition shared both by the mainline Protestant and the reform and conservative Jewish community. Yet most people are unaware of their fundamental legal right to make such decisions, and as court cases from Quinlan (In re Quinlin, 137 N.J. Super. 227, 1975) to Cruzan demonstrate, few know [End Page 163] how to make arrangements for this right to be exercised if they become incapacitated.Meanwhile, health care practices are often driven by a denial of death. When Senator Danforth and Senator Daniel Patrick Moynihan (D-NY) introduced the bill on October 17, 1989, Senator Danforth said:More and more it is arguable that we play God by subjecting people to unwanted and sometimes unnecessary treatment, treatment that unnaturally prolongs the dying process. Our health care system has become obsessed with extending life, at times neglecting the caring component of medicine and trampling on the rights of patients.(Congressional Record 1989, 135:5.13566)The American Hospital Association estimates that 70 percent of deaths now occur after a determination to withhold or withdraw medical treatment. Many of those decisions are made without the benefit of an incapacitated patient's views, yet a Harvard study revealed that 95 percent of the population would like to prepare in advance for such decisions. Only 4 percent of hospitals have a systematic method of asking patients if they have an advance directive. Family members confront painful choices in the face of uncertainty about their loved one's wishes and it can be even more painful when a family knows the patient's desires but providers and the courts act otherwise because clear evidence is lacking.The Patient Self-Determination Act is rooted in the belief that people should be given information that enables them to specify the extent of medical treatment they wish to receive should they become incapacitated. The public should be educated about applicable state laws that protect the individual's right to make such choices through the use of an advance directive.The Act moves toward that goal by promoting knowledge of state laws. It requires every hospital, nursing home, home health agency, hospice, and health maintenance organization that participates in Medicaid or Medicare to routinely give all adult patients information about advance directives. Patients will also be given information on the... (shrink)

This July 2020 issue of JME introduces a new section, “COVID-19 Current Controversies,” which will be a recurring section in each issue for the foreseeable future. This issue reflects on some of the most pressing ethical issues that have arisen roughly 6 months into the pandemic. Kathleen Liddell and colleagues examine important legal considerations at play in ventilator allocation decisions raised by the pandemic.1 They point out that ethics-based triage protocols that argue from the principle of “saving the most lives” (...) by withholding or withdrawing ventilators from certain patients could violate the law (U.K. and elsewhere). Patients’ legal rights are not suspended during this crisis, they remind us. The mere action of ventilator removal (extubation and proning) may constitute battery without consent, for example. Moreover, there may be problems with “evidentiary weakness” in some of the prognostic models used to inform such decisions. And, decisions that are inconsistent, subjective, and/or discriminatory may be deemed illegal. Those developing policies need to consider and consult various areas of law including criminal law (eg, murder, battery, negligence, manslaughter), human rights law, civil law (eg, battery, negligence, duty of care, consent), public and administrative law (eg, discrimination, case law), law on decision-making for incapacitated adults, professional regulations, and derogations from current law (eg, immunities and indemnities). Liddell et al offer 10 concrete, legally informed recommendations for those developing triage-policies to consider. Michael Parker and colleagues take on the issue of contact tracing using mobile apps and point out that such apps can enable people to emerge more safely from lockdowns, which provides a strong autonomy-based argument in favour …. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Clinical Bioethics at NIH:History and A New VisionJohn C. Fletcher (bio)On July 3, 1995, Dr. John I. Gallin, Director of the Magnuson Clinical Center of the National Institutes of Health (NIH), convened a one-day "Conference on the Future of Clinical Bioethics at the National Institutes of Health Intramural Program." Conferees included NIH officials and a panel of consultants from bioethics programs around the nation.1 The subject was the future (...) of NIH's intramural bioethics program and specifically a vision of a new multi-component program, presented by Dr. Gallin, the first speaker. Dr. Harold Varmus, Director of NIH, was there to assure his support for Dr. Gallin's vision. This author, honored to be second speaker, was invited to sketch a brief history of bioethics at NIH. The present article reviews some of this history and then reports on Dr. Gallin's proposal, points of consensus among speakers and conferees, and the search for a Chief of the Clinical Bioethics Program.History of Bioethics at NIHIt is often said that NIH is a well-kept secret as the nation's leading biomedical research facility. Also, few people know that NIH has a long history in bioethics. Some key events in that history are shown in Figure 1, beginning with two that occurred prior to the birth of bioethics. NIH made an early policy response to protect human subjects of research and to find acceptable limits for scientific freedom. The Clinical Center (CC), a 550-bed research hospital, opened in 1953. A subcommittee of the Medical Board, the Clinical Research Committee (CRC), was formed for prior group review of all studies with normal volunteers. The traditional practice was for researchers themselves to decide when studies would begin, which subjects to recruit, and whether informed consent would be sought. The CRC intervention bit into this tradition. In addition, patient studies that posed significant risks or departed widely from medical practice were reviewed by referral from the Clinical Directors of the various Institutes. Was this CRC an early institutional review [End Page 355] board (IRB)? As a guest researcher, I was permitted to observe the CRCs meetings between 1966 and 1969. It functioned much like an IRB but had no community or non-scientist members. Other IRB-like review groups undoubtedly existed prior to the CRC. Robert Levine (personal communication, September 7, 1995) recalls that Beth Israel Hospital in Boston had one in 1938. Historical research is clearly needed on the earliest forms of research review.Table 1. Bioethics at NIHEventYearClinical Research Committee1953Surgeon-General's PPO #1291966NIGMS funds Hastings Genetics Group1973OPRR's Mission1974NLM's grant to KennedyInstitute for Bibliography of Bioethics1974Recombinant DNA Advisory Committee1974STEP Series Bioethics Speakers1975Pre-IRBs at the CC1975-76Assistant for Bioethics to Director, CC1977RAC-Human Gene Therapy Subcommittee1983Lipsett Proposal (ICD)1983Liaison Group, CC1983Bioethics Program, CC1985Durable Power of Attorney for Researchwith Incapacitated Subjects1985-86NLM funds National Reference Centerfor Bioethics Literature1985National Institute for Nursing Research1986Bioethics Post-Doctoral Fellows Program1989ELSI Program1989Bioethicists on CC-IRBs1989CC-Ethics Committee1990Office of Human Subjects Research1992 [End Page 356]Between 1963 and 1967, the media exposed instances of ethically troubling research, and Beecher (1966) and Pappworth (1967) published sharp criticisms of the weak state of research ethics. In 1966, Surgeon-General William Stewart and NIH Director James Shannon issued a policy requiring local group review of all research involving human subjects before making an application for NIH peer review (Surgeon General 1966). The policy was the first in any nation to mandate ethics committees for clinical research. However, it did not apply to the NIH intramural program until Congress passed the National Research Act in 1974 (Public Law 93-348; 202, 88 Stat. 342, 1974). This lag permitted NIH intramural investigators the luxury of feeling above the norms imposed on ordinary mortals and guaranteed more resistance to the inevitable change to come. Resistance to change marked the intramural program from the mid-1960s to the mid-1970s... (shrink)

Negative retributivism is the view that though the primary justifying aim of legal punishment is the reduction of crime, the state's efforts to do so are subject to side-constraints that forbid punishment of the innocent and disproportionate punishment of the guilty. I contend that insufficient attention has been paid to what the side-constraints commit us to in constructing a theory of legal punishment, even one primarily oriented toward reducing crime. Specifically, I argue that the side-constraints limit the kinds of actions (...) that are appropriately criminalised, the kinds of beings who are appropriately liable to legal punishment, and the absolute and comparative severity of sanctions. I also argue that a third retributive constraint is needed, one which I term a ‘non-degradation constraint’. According to this third constraint, in our efforts to reduce crime, we must avoid treating offenders as non-moral beings and ensure that punishment does not atrophy or erode the complex capacity for moral responsibility. When this third constraint is combined with the persuasive instrumental case for promoting the moral responsiveness of offenders, the result is an approach to crime reduction that is quite different from ones which emphasise general deterrence and incapacitation. In the closing section, I broach the question whether negative retributivism has been appropriately characterised in the literature on legal punishment. (shrink)

Nietzche claimed that once we know why to live, we’ll suffer almost any how.1 Artificial intelligence (AI) is used widely for the how, but Ferrario et al now advocate using AI for the why.2 Here, I offer my doubts on practical grounds but foremost on ethical ones. Practically, individuals already vacillate over the why, wavering with time and circumstance. That AI could provide prosthetics (or orthotics) for human agency feels unrealistic here, not least because ‘answers’ would be largely unverifiable. Ethically, (...) the concern is that AI stands to frack our humanity. We form a fragile ecosystem of ethical subjects, our responsiveness to others’ suffering, enabled by our own. To deliberate together for incapacitated others is among those solemn privileges that verify our humanity. Having AI mine these delicate pain-forests risks treating our suffering as the new oil—to be extracted and exploited, but beyond our vision and at our cost. Let’s briefly develop each idea, starting with the how/why distinction. This is palpable, even for more prosaic questions like how or why to drive. The former admits of increasingly sophisticated technological fixes and nudge; the latter often remains very particular and personal. How much greater then, the difference between …. (shrink)

Judgments of beauty are neither subjective nor arbitrary, and are a necessary part of practical reasoning in any attempt to harmonise our activities and ways of life with those of our neighbours. The creation of a neighbourhood, a place, a home, or any other settlement in which people of different occupations and views reside side by side involves coordination of a kind that only aesthetic judgment can reliably achieve. And that is why judgment of that kind exists, and why a (...) rational being who has no grasp of it is incapacitated. (shrink)

This issue’s “Legal Briefing” column covers recent legal developments involving medical decision making for incapacitated patients who have no available legally authorized surrogate decision maker. These individuals are frequently referred to either as “adult orphans” or as “unbefriended,” “isolated,” or “unrepresented” patients. The challenges involved in obtaining consent for medical treatment on behalf of these individuals have been the subject of major policy reports. Indeed, caring for the unbefriended has even been described as the “single greatest category of problems” (...) encountered in bioethics consultation. In 2012, JCE published a comprehensive review of the available mechanisms by which to make medical decisions for the unbefriended. The purpose of this “Legal Briefing” is to update the 2012 study. Accordingly, this “Legal Briefing” collects and describes significant legal developments from only the past three years. My basic assessment has not changed. “Existing mechanisms to address the issue of decision making for the unbefriended are scant and not uniform.” Most facilities are “muddling through on an ad hoc basis.” But the situation is not wholly negative. There have been a number of promising new initiatives. I group these developments into the following seven categories: 1. Increased Attention and Discussion 2. Prevention through Better Advance Care Planning 3. Prevention through Expanded Default Surrogate Lists 4. Statutorily Authorized Intramural Mechanisms 5. California Litigation Challenging the Team Approach 6. Public Guardianship 7. Improving Existing Guardianship Processes. (shrink)

This issue’s “Legal Briefing” column covers the recent decision by the Centers for Medicare and Medicaid Services (CMS) to expand Medicare coverage of advance care planning, beginning 1 January 2016. Since 2009, most “Legal Briefings” in this journal have covered a wide gamut of judicial, legislative, and regulatory developments concerning a particular topic in clinical ethics. In contrast, this “Legal Briefing” is more narrowly focused on one single legal development. This concentration on Medicare coverage of advance care planning seems warranted. (...) Advance care planning is a frequent subject of articles in JCE. After all, it has long been seen as an important, albeit only partial, solution to a significant range of big problems in clinical ethics. These problems range from medical futility disputes to decision making for incapacitated patients who have no available legally authorized surrogate. Consequently, expanded Medicare coverage of advance care planning is a potentially seismic development. It may materially reduce both the frequency and severity of key problems in clinical ethics. Since the sociological, medical, and ethical literature on advance care planning is voluminous, I will not even summarize it here. Instead, I focus on Medicare coverage. I proceed, chronologically, in six stages: 1. Prior Medicare Coverage of Advance Care Planning 2. Proposed Expanded Medicare Coverage in 2015 3. Proposed Expanded Medicare Coverage in 2016 The Final Rule Expanding Medicare Coverage in 2016 4. Remaining Issues for CMS to Address in 2017 5. Pending Federal Legislation. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:A NOTE ON THE RELATION OF PACIFISM AND JUST-WAR THEORY: IS THERE A THOMISTIC CONVERGENCE? 1 GABRIEL PALMER-FERNANDEZ Youngstown State University Youngstown, Ohio FOR CENTURIES, the moral analysis of war began with a consideration of a set of principles which together form the doctrine of the just-war and with a rejection of pacifism. However, several recent studies by Catholic moralists argue that pacifism and just-war theory have much in (...) common and converge in at least one morally important way-namely, they share a presumption against violence. In this note I want to consider whether or not classical just-war theory gives us reason to accept this claim. I will give evidence against it, and suggest that the "original just-war question," as James Turner Johnson calls it, does not begin with aprohibitive presumption or some equivalent constraint on action. If we are to speak of a presumption in classical just-war theory, it is that justice be done for the sake of the common good. Up to very recent times, those Christian denominations which Ernst Troeltsch called the "church-type" (Lutheran, Anglican, Calvinist, and Roman Catholic) upheld a " two-tiered " or "double" morality. A "vocational" pacifism was required of clerical ranks, and the individual Christian was obligated to take up arms for the sake of the common good. For example, prior to the Second Vatican Council, Roman Catholic teaching on war rejected conscientious objection to all war (i.e., pacifism) as an option for Catholics. Manuals of moral theology prior to Vatican 1 I wish to acknowledge the very helpful and detailed comments provided by Richard B. Miller to an earlier version of this paper. 247 248 GABRIEL PALMER-FERNANDEZ II did prohibit the soldier from fighting in an unjust war and made room for subjective doubt about the justice of a particular war. But the consensus among Catholic theologians was both wide and deep. Pacifism for individual Christians did not have any moral-theological justification. It was, in fact, a grave moral error. In spite of this, Vatican II called for a " completely fresh reappraisal of war." 2 The policy of obliterating whole cities enacted during World War II, coupled with the development of nuclear and other indiscriminate weapons of destruction (e.g., incapacitating gases, biological weapons, etc.) and the instability of superpower relations, created an unprecedented condition for which traditional teachings on war seemed woefully inadequate, if not morally dangerous. A new, more far-reaching perspective was needed. And this was to allow for individuals the pacifist option as a second and complementary moral doctrine alongside traditional teaching on war.3 As the American Catholic bishops said in their pastoral letter on war and peace : 2 Pastoral Constitution on the Church in the Modern World, in A. Flannery, 0.P., ed., Vatican Council II: The Conciliar and Post Conciliar Documents (Collegeville, Minn. : Liturgical Press, 1975), par. 80. 3 This development in contemporary Roman Catholic teaching on war and peace has been challenged with considerable force by George Weigel in what has become one of the most controversial studies on the subject. In Tranquillitas Ordinis: The Present Failure and Future Promise of American Catholic Thought on War and Peace (New York: Oxford University Press, 1987), Weigel advances several arguments which are meant to correct what he insists is a failure among Catholic ethicists in the U.S. to develop their tradition, and, indeed, an abandonment of their heritage. " At the level of moral theory," Weigel maintains, "the two classic positions [just-war theory and pacifism] are not reconcilable. The attempt to merge them... tends to corrupt both traditions. Pacifists end up making judgments on military strategy and tactics, and just-war theorists are held accountable to arguments they previously declined to accept.... The net result is to bifurcate morality and politics, and to abandon attempts to apply the tradition of reason to the limit case of the use of armed force in the defense of values-which is precisely the result Murray most feared in his strictures against moralism" (251). For David Hollenbach's rebuttal, see his review essay, "War and Peace in American Catholic Thought: A Heritage Abandoned? " Theological Studies 48 (1987) : 711-727... (shrink)

An ethical conflict arises when we must perform research in the interest of future patients, but that this may occasionally injure the interests of today''s patients. In the case of cognitively impaired persons, the question arises whether it is compatible with humane healthcare not only to treat, but also to use these patients for research purposes. Some bioethicists and theologians have formulated a general duty of solidarity, also pertaining to cognitively impaired persons, as a justification for research on these persons. (...) If one examines this thesis from the theory of justice according to John Rawls, it is revealed that such a duty of solidarity cannot necessarily be extrapolated from Rawls' conception of justice. This is at least true of Rawls' difference principle, because accordingto the difference principle only those measures are justifiable which serve the interest of the respective least well off. Those measures which would engender additional injury for the least well off could not be balanced by any utility according to Rawls. However, John Rawls' difference principle is subordinate to the first principle, which is that each person has an equal right to the most extensive basic liberty compatible with the same liberty for others. These primary goods are determined by the freedom and integrity of the person. This integrity of decisionally impaired persons would be in danger if one would abstain from research and thus forego the increase in knowledge related to their disease. Thus one could conclude, at least from Rawls' first principle, that society must take on a duty to guarantee the degrees of freedom for cognitively impaired persons and thus also support the efforts for their healing. (shrink)

Improving the treatment of life threatening emergency illness or disease requires that new or novel therapies be assessed in clinical trials. As most subjects for these trials will be incapacitated there is some controversy about they might best protected whilst still allowing research to continue. Recent European and UK clinical trials legislation, which has effectively stopped research into emergency conditions, is discussed. Possible changes to these regulations are proposed.

The paper criticizes criminal law scholarship for helping to construct and failing to expose analytic structures that falsely claim a higher level of rationality and coherence than current criminal law theory deserves. It offers illustrations of three such illusions of rationality. First, it is common in criminal law discourse for scholars and judges to cite any of the standard litany of "the purposes of punishment" -- just deserts, deterrence, incapacitation of the dangerous, rehabilitation, and sometimes other purposes -- as a (...) justification for one or another liability rule or sentencing practice. The cited "purpose" gives the rules an aura of rationality, but one that is, in large part, illusory. Without a principle defining the interrelation of the "purposes," nearly any rule can be justified by some "purpose of punishment." Thus, a decision maker can switch among distributive principles as needed to provide an apparent rationale for whichever rule the person prefers, even if that preference is not based on rational criteria. A second example is found in a central mechanism for determining an offenderâs blameworthiness: the use of an individualized objective standard. The widely used mechanism avoids the problems acknowledged to attend a strictly objective standard. A person's situation and capacities are central to an assessment of whether a person can be fairly blamed for a violation, and the individualized objective standard allows the decision maker to take these into account. At the same time, the mechanism avoids reversion to a completely subjective standard, which might exempt many blameworthy cases from liability. In reality, however, the mechanism only shifts the form of the problem. Codes that use the individualized objective standard fail to provide a principle by which one can determine those characteristics of an offender with which the objective standard ought to be individualized and those with which it ought not. Without a governing principle, the issue again is left to the discretion of decision makers, with no guidance as to how that discretion is to be exercised. A final illusion obscures whether the criminal justice system is, in fact, in the business of "doing justice." The "criminal justice" system imposes "punishment" and encourages moral condemnation of those found "guilty" of "crimes." But while the system cultivates its doing-justice image, it increasingly shifts to a system of essentially preventive detention, where a violator's sanction is derived more from what is needed to incapacitate him from committing future offenses than to punish him for a past offense. There are great advantages to the deception, but also serious costs and inefficiencies. The paper discusses why some illusions are more objectionable than others and what the existence of such illusions says about modern criminal law scholarship. (shrink)

Classifying research proposals by risk of harm is fundamental to the approval process and the most pivotal risk category in most regulations is that of “minimal risk.” If studies have no more than a minimal risk, for example, a nearly worldwide consensus exists that review boards may sometimes: (1) expedite review, (2) waive or modify some or all elements of informed consent, or (3) enroll vulnerable subjects including healthy children, incapacitated persons and prisoners even if studies do not (...) hold out direct benefits to them. The moral and social purposes behind this threshold are discussed along with relevant views from the National Commission, NBAC, NHRPAC, Grimes v. Kennedy Krieger Institute, The Nuremberg Code, and The WMA's Declaration of Helsinki. Representative policies from Australia, Canada, South Africa, the U.S., and CIOMS are reviewed revealing different understandings of this sorting threshold. Six of nine frequently cited interpretations of “minimal risk” are untenable. The “absolute” interpretation of the “routine examination” standard is defended as best. (shrink)

La recherche actuelle se trouve dans l'incapacité d'expliquer l'émergence de la conscience à partir du cerveau, ainsi que son efficience sur celui-ci et, par son intermédiaire, sur le corps. La faute en incombe au dualisme des substances qui constitue encore l'horizon de la science actuelle, lequel dualisme ouvre un abîme infranchissable entre la matière et l'esprit. Il convient donc de repenser les rapports de la conscience et du corps, et ce à partir de la vie qui les conjoint. Cet ouvrage (...) défend l'idée qu'une entité matérielle organisée afin de se conserver elle-même est inévitablement intéressée à sa propre conservation: pas de vie sans désir de vivre, par suite sans un sentiment de vivre qui est la vie même. La vie ne se réduit pas à sa dimension matérielle, 'machinique'. Il n'est évidemment pas question de recevoir un tel énoncé comme un dogme. L'objectif de ce livre est de l'établir rationnellement, en essayant par ailleurs de montrer comment la conscience peut surgir de la subjectivité primitive, inconsciente, qu'il faut reconnaître à tout être vivant."--Page 4 of cover. (shrink)

Advance directives (ADs) offer the opportunity for patients to express their desires regarding medical care in advance of any form of incapacitation. However, the efficacy of ADs in achieving care that aligns with patients’ preferences is the subject of intense ethical debate. Current instructional AD formats may not allow for expression of the reasoning or values behind a patient’s care preferences, limiting their utility and efficacy. Here, we review written AD formats and their limitations, and discuss video messages, as a (...) supplement to written ADs, as a potential improvement. While video messages have limitations of their own, their potential use as a tool for better understanding patients’ wishes and values suggests a need for further research and consideration of their application and integration into standard clinical practice. (shrink)

Predictive Sentencing addresses the role of risk assessment in contemporary sentencing practices. Predictive sentencing has become so deeply ingrained in Western criminal justice decision-making that despite early ethical discussions about selective incapacitation, it currently attracts little critique. Nor has it been subjected to a thorough normative and empirical scrutiny. This is problematic since much current policy and practice concerning risk predictions is inconsistent with mainstream theories of punishment. Moreover, predictive sentencing exacerbates discrimination and disparity in sentencing. Although structured risk assessments (...) may have replaced 'gut feelings', and have now been systematically implemented in Western justice systems, the fundamental issues and questions that surround the use of risk assessment instruments at sentencing remain unresolved. This volume critically evaluates these issues and will be of great interest to scholars of criminal justice and criminology. (shrink)

A number of philosophers have become interested in the ways that individuals are subject to harm as the performers of illocutionary acts. This paper offers an account of the underlying structure of such harms: I argue that speakers are the subjects of illocutionary harm when there is interference in the entitlement structure of their linguistic activities. This interference comes in two forms: denial and incapacitation. In cases of denial, a speaker is prevented from achieving the outcomes to which they (...) are entitled by their speech. In cases of incapacitation, a speaker’s standing to expect certain outcomes is itself undermined. I also discuss how individual speakers are subject to interference along two dimensions: as exercisers of certain non-linguistic capacities, and as producers of meaningful speech. (shrink)

L’auteur, psychologue clinicienne, explore à partir d’une situation clinique le champ des violences intrafamiliales extrêmes impliquant ici un inceste à la fois paternel, maternel et fraternel. C’est au décours de la maternité que ce passé traumatique (et non dit) fut ravivé, nécessitant du sujet d’importants remaniements psychiques pour ne pas sombrer dans la dépression profonde. Le suivi clinique engagé montre les limites du processus thérapeutique, lorsque l’impensable et a fortiori l’irreprésentable provoquent une incapacité d’élaboration du trauma et son dépassement. Enfin, (...) l’auteur propose d’éclairer les enjeux déterminants de la dynamique transférentielle et contretransférentielle, pour le travail d’historicisation et d’inscription du trauma par le sujet, qui vont s’inaugurer par des modalités inédites de création subjective présageant d’un véritable processus de subjectivation. (shrink)

Purpose Although surrogate decision-making is prevalent in intensive care units and concerns with decision quality are well documented, little is known about how clinicians help family members understand the surrogate role. We investigated whether and how clinicians provide normative guidance to families regarding how to function as a surrogate. Subjects and methods We audiorecorded and transcribed 73 ICU family conferences in which clinicians anticipated discussing goals of care for incapacitated patients at high risk of death. We developed and (...) applied a coding framework to identify normative statements by clinicians regarding what considerations should guide surrogates’ decisions, including whether clinicians explained one or more of Buchanan and Brock’s three standard principles of SDM to family members. Results Clinicians made at least one statement about how to perform the surrogate role in 24 conferences ). We observed three general types of normative guidance provided to surrogates, with some conferences containing more than one type of guidance: counselling about one or more standard principles of SDM ; counselling surrogates to make decisions centred on the patient as a person, without specifying how to accomplish that ; and counselling surrogates to make decisions based on the family’s values. Conclusions Clinicians did not provide normative guidance about the surrogate role in two-thirds of family conferences for incapacitated patients at high risk for death. When they did, clinicians’ guidance was often incomplete and sometimes conflicted with standard principles of SDM. Future work is needed to understand whether providing explicit guidance on how to perform the surrogate role improves decision-making or mitigates surrogates’ psychological distress. (shrink)

A New York court recently struck down state Office of Mental Health regulations governing research involving subjects with impaired decisionmaking capacity. The court held that neither incapacitated adults nor minors could participate in any research protocol that contained a nontherapeutic element, irrespective of possible benefits to the subject or the importance of the knowledge to be gained. Although the decision rested on a technical point of law and dealt only with psychiatric research, the court's holding has significantly broader (...) implications. (shrink)

Recognizing that GLBTI individuals are often barred from visiting their partners in hospitals or from acting as health care surrogates for incapacitated partners, President Obama directed the Department of Health and Human Services to address these issues. In response, the department amended its rules to prohibit hospitals from restricting, limiting, or denying visitation privileges on the basis of gender identity or sexual orientation. But the changes do not affect the designation of a health care surrogate, a matter largely governed (...) by state law. Therefore, subject to state law, same-sex partners can still be legally barred from making health care decisions for their incapacitated partners, and it remains essential that they execute advance directives and appoint one another as their health care proxies. (shrink)

Criminal responsibility refers to a person’s ability to understand his action, behavior at the time a crime is committed, what a person is thinking when he commits a crime or the expected result when a crime is committed. Crime is defined in terms of an act or omission (actus reus) and a mental state (mens rea). In this paper, is presented the general concept of irresponsibility and essentially reduced responsibility as a reason to be exempted from the punishment provided by (...) the Criminal Code. Any perpetrator of a criminal offense who is capable of undertaking any action can be an active subject of a criminal offense, with the fact that regarding their sanctioning by the criminal system is concerned there are some restrictions related to age as well as dividing the perpetrators into responsible and non-responsible ones. For a person to be convicted of a crime, there must be evidence that proves his guilt, and that proves whether the perpetrator was in a regular state of mind or committed the criminal offense due to his irresponsibility. Another important element of this scientific paper is the historical aspects of how irresponsibility has been treated from the customary law to the present day, a huge focus gets also the treatment of the biological-psychological concept on one hand and the treatment of the legal concept on the other hand for this category of people. A criminal defendant who turns out to have been incapacitated at the time he committed a crime may be acquitted because of his incapacity, or he may be sentenced leniently because he was unable to understand the importance of his actions. Legally, the defendant must prove and convince the court that he was not able to understand his actions, or he is not able to distinguish right from wrong, or he must prove that he committed the act in uncontrolled impulses. (shrink)

This article will examine the claim that personal autonomy is impaired by a paradigmatic instance of serious psychopathology – namely, the condition of being delusional – in light of the hierarchical conception of personal autonomy. This conception of personal autonomy aims at yielding value‐neutral judgements about freedom and self‐governance. I will argue that when viewed from the perspective of this specific conception of autonomy, delusions do not necessarily impair an agent's personal autonomy. In order to establish this claim, I will (...) probe the general idea that delusional subjects are beset by a mental disease that is rationally incapacitating, to which the hierarchical theorist might appeal. I argue that, understood within the parameters set by the commitment to value neutrality, this idea fails to provide support for the claim that delusion necessarily impairs personal autonomy. One contribution this article makes to the effort of understanding how delusion impairs personal autonomy is to help us pinpoint the ways in which our value commitments inform our judgements of impaired personal autonomy in delusional agents. (shrink)

In recent years, the concept of debility has gained a lot of attention. In critical theory and in the critical medical humanities, the concept has come to refer specifically to the general ill-health of ordinary lives under neoliberal capitalism; as such, it has triggered a surge of interest in large-scale affective assemblages that incapacitate multitudes of bodies. This article proposes _neoliberal misfit_ as a conceptual tool to remedy the dissolution of subjectivity in these discussions. Pushing back against Jasbir Puar specifically, (...) it argues that processes of debilitation produce a particular type of subject formation often ignored in this body of work. The article does so by distinguishing this subject formation in three contemporary illness narratives that dramatize encounters between ill bodies and accelerating rhythms, competitive atmospheres, and mobile attachments, respectively. Ultimately, the aim is to help the critical medical humanities capture how neoliberal environments affect the self-perception of people suffering from ill-health. (shrink)

In her recent discussion of ILLRP 311 Kirsteen Moir draws attention to the discrepancy between the epitaph's apparent claim that young Publius had before him a brilliant career, had he but survived, and the description which Cicero provides of Africanus' son, Publius, who is usually identified, with varying degrees of conviction, as the subject of this inscription. As Moir points out, the son of Africanus, though remarkably erudite, was incapacitated by poor health from achieving the military and political distinction (...) predicted by the necrology. Within the actual text of this inscription, one might add, there is another discrepancy: the Publius here commemorated was flamen Dialis, and the taboos which restricted the daily life of the priest of Jupiter effectively barred him, regardless of his powers or inclination, from fulfilling the promise voiced by his memorial. Moir proposes a solution which will solve both problems. She suggests that the gloria to which Publius could look forward was literary celebrity. The son of Africanus, after all, composed works known and read by Cicero a century later, works which documented his literary capabilities. Such attainment was well within the grasp of the flamen Dialis. And this interpretation of the inscription, if correct, would solve both discrepancies. (shrink)

One prominent argument in international law and religious thought for abolishing capital punishment is that it violates individuals’ right to life. Notably, this _right-to-life argument_ emerged from normative and legal frameworks that recognize deadly force against aggressors as justified when necessary to stop their unjust threat of grave harm. Can capital punishment be necessary in this sense—and thus justified defensive killing? If so, the right-to-life argument would have to admit certain exceptions where executions are justified. Drawing on work by Hugo (...) Bedau, I identify a thought experiment where executions are justified defensive killing but explain why they cannot be in our world. A state’s obligations to its prisoners include the _obligation to use nonlethal incapacitation_ (ONI), which applies as long as prisoners pose no imminent threat. ONI precludes executions for reasons of future dangerousness. By subjecting the right-to-life argument to closer scrutiny, this article ultimately places it on firmer ground. (shrink)

Back injuries have a bad reputation. The workman looks upon them with apprehension, the insurance company with doubt, the medical examiner with suspicion, the lawyer with uncertainty. The medical examiner is faced with the difficulty of estimating the true value of the subjective symptoms in the comparative absence of physical signs. His suspicion is born of the frequent disparity between these two. This prophetic statement made almost 100 years ago highlights an ongoing problem - how people who are incapacitated (...) by painful conditions such as chronic low back pain can be evaluated consistently and equitably for purposes of disability compensation. We confronted this vexing problem when we participated in writing the chapter devoted to impairment associated with pain of the American Medical Association s Guides to the Evaluation of Permanent Impairment, 5th edition AMA Guides 5th Our purposes in this essay are to clarify several important conceptual issues associated with the assessment of pain among disability applicants, and to articulate reasons why pain should be considered in impairment and disability ratings. (shrink)

In our present-day Western society, there has been an increasing tendency towards individualism and indifference and away from altruism and empathy. This has led to a resurgence of ethical concerns in contemporary Continental philosophy. Following the thinking of philosophers such as Emmanuel Levinas, ethics has come to be defined in terms of a disinterested and selfless concern for the well-being of others. Levinas claims that taking care of others in need is not a free, rational decision, but a fundamental responsibility (...) that is pre-consciously felt. We are passively obligated before we can actively choose to help. Levinas therefore argues that the needy other incapacitates our normal selfish ways, and that this ‘radical passivity’ enables us to recognise our inherent responsibility towards others in need. Levinas's own thinking on this subject is not unambiguous, however. While his early works stress the fact that we cannot care for others if we do not first take care of ourselves, his later works focus exclusively on the other as locus of our ethical responsibility. Following this line of thinking, a false opposition has emerged between an absolutised egoism and a crushing altruism that threatens to undermine the recent resurgence of ethical concerns. For how can we continue to care for others if we fail to recognise the duties we have towards ourselves? Moreover, what is the moral significance of responsible action if it is not freely chosen but passively imposed? (shrink)

For the more than a decade, I have advanced an account of what makes persons, animals, and other beings entitled to moral treatment for their own sake that is informed by characteristically African ideas about dignity, a great chain of being, and community. Roughly according to this account, a being has a greater moral status, the more it is capable of communing (as a subject) or of us communing with it (as an object). I have mainly argued that this characteristically (...) African and relational approach to moral status is a better account than salient Western approaches, especially individualist views associated with utilitarianism and Kantianism. Over the years, several commentators have raised criticisms of my approach, including that it objectionably: entails that we may rightly dominate mentally incapacitated human beings; prioritizes mentally incapacitated human beings over animals with similar cognitive abilities without sufficient justification; entails that intelligent aliens lack moral status; cannot make sense of our duties towards the dead; and is unable to account for the standing of species as distinct from their members. In this chapter I provide a comprehensive response to these and related objections, defending the initial account as an attractive way to understand what makes a being matter morally for non-instrumental reasons. (shrink)

La théorie marxiste de l'État souffre de l'ambiguïté fondamentale de la doctrine marxiste. C'est sur la question centrale de la « période de transition » et du « dépérissement » de l'État prolétarien que cette théorie révèle les apories d'une conception économiste des superstructures. Par une étude de certains textes classiques sur la question, nous tentons de démontrer que la dérive totalitaire des états socialistes procède tant de l'incapacité de poser le problème de la bureaucratisation de l'État que de la (...) croyance mythique en une extinction spontanée de l'État. Cette théorie reste aveugle aux conséquences d'une concentration étatique des pouvoirs qu'elle préconise néanmoins explicitement. Ainsi le marxisme en vient-il à combler la figure hégélienne d'un État représentant l'universalité.The Marxist theory of the State is afflicted by the fundamental ambiguity of the Marxist doctrine. It is in relation with the central question of the "transition period" and of the "witering away" of the proletarian State that this theory discloses the difficulties of an economic determinism of the superstructure. Through a study of some classical texts on this subject, we will try to demonstrate that the totalitarian drift of the Socialist States proceeds from the incapacity to set forth the problem of the bureaucratisation of the State as well as from a mythical belief in a spontaneous extinction of the State. This theory stays blind to the consequences of a concentration of powers in the State, although it advocates it explicitly. Marxism thus fulfils the Hegelian figure of a State representing universality. (shrink)

This article will examine the claim that personal autonomy is impaired by a paradigmatic instance of serious psychopathology – namely, the condition of being delusional – in light of the hierarchical conception of personal autonomy. This conception of personal autonomy aims at yielding value‐neutral judgements about freedom and self‐governance. I will argue that when viewed from the perspective of this specific conception of autonomy, delusions do not necessarily impair an agent's personal autonomy. In order to establish this claim, I will (...) probe the general idea that delusional subjects are beset by a mental disease that is rationally incapacitating, to which the hierarchical theorist might appeal. I argue that, understood within the parameters set by the commitment to value neutrality, this idea fails to provide support for the claim that delusion necessarily impairs personal autonomy. One contribution this article makes to the effort of understanding how delusion impairs personal autonomy is to help us pinpoint the ways in which our value commitments inform our judgements of impaired personal autonomy in delusional agents. (shrink)

This issue’s “Legal Briefing” column covers recent legal developments involving POLST (physician orders for lifesustaining treatment.) POLST has been the subject of recent articles in JCE. It has been the subject of major policy reports and a recent New York Times editorial. And POLST has been the subject of significant legislative, regulatory, and policy attention over the past several months. These developments and a survey of the current landscape are usefully grouped into the following 14 categories: 1. Terminology2. Purpose, function, (...) and success3. Status in the states4. Four legal routes of implementation5. Which professionals can authorize POLST?6. Is the patient’s signature required?7. Can surrogates consent to for incapacitated patients?8. If a POLST conflicts with an advance directive, which prevails?9. Is offering POLST mandatory?10. What are the duties of healthcare providers?11. What is the role of electronic registries?12. What is the role of the federal government?13. International adoption14. Court cases. (shrink)

The liberal democratic regimes rest on a well-developed public sphere accessible to all citizens that favors free discussions based on reason and critical debate and serves as a space where public opinion is formed through reasoned dialogue. The new digital technologies disrupted many parts of contemporary democratic societies and transformed their public sphere. Digital transformation alters industries and markets, changing the perceived subjective value, satisfaction, and usefulness of goods or services and displacing established companies and products. Within the political realm, (...) digital transformation creates a cleavage between the vulnerable populations who are ill-informed and lack digital fluency and politicians who tend to learn about peoples‟ problems not to deal with them but to weaponize new technologies to engineer elections and win power. The rise of misinformation and disinformation undermines public trust in democratic institutions and discourages or incapacitates citizens from engaging in debates within the public sphere. On the other hand, the digital transformation of the public sphere empowers ordinary people to aggregate in various publics and counteract the domination of the mainstream parties. Our paper aims to answer whether new technologies provide citizens with ways to counter the undemocratic tendencies caused by digital transformation and engage actively in the public sphere. (shrink)

For the more than a decade, I have advanced an account of what makes persons, animals, and other beings entitled to moral treatment for their own sake that is informed by characteristically African ideas about dignity, a great chain of being, and community. Roughly according to this account, a being has a greater moral status, the more it is capable of communing (as a subject) or of us communing with it (as an object). I have mainly argued that this characteristically (...) African and relational approach to moral status is a better account than salient Western approaches, especially individualist views associated with utilitarianism and Kantianism. Over the years, several commentators have raised criticisms of my approach, including that it objectionably: entails that we may rightly dominate mentally incapacitated human beings; prioritizes mentally incapacitated human beings over animals with similar cognitive abilities without sufficient justification; entails that intelligent aliens lack moral status; cannot make sense of our duties towards the dead; and is unable to account for the standing of species as distinct from their members. In this chapter I provide a comprehensive response to these and related objections, defending the initial account as an attractive way to understand what makes a being matter morally for non-instrumental reasons. For many animals to have a moral status would have important implications for the practice of agriculture, for instance farming animals for food and expanding crops. (shrink)

The paper examines one objection to the suggestion that, rather than being subjected to extended prison sentences on the one hand, or simply released on the other, dangerous offenders should be in principle liable to some form of civil detention on completion of their normal sentences. This objection raises the spectre of a, pursuing various reductivist means outside the criminal justice system. The objection also threatens to undermine dualist theories of punishment, theories which combine reductivist and retributivist considerations. The paper (...) attempts to refute the objection by holding that a wedge can be driven between incapacitation and other reductivist measures, and hints at a possibly new version of dualism in the process. (shrink)