In this book, public health ethicist Daniel S. Goldberg sets out to characterize the subjective experience of pain and its undertreatment within the US medical establishment, and puts forward public policy recommendations for ameliorating the undertreatment of pain. The book begins from the position that the overwhelming focus on opioid analgesics as a means for improving the undertreatment of pain is flawed, and argues instead that dominant Western models of biomedicine and objectivity delegitimize subjective knowledge of the (...) body and pain in the US. This general intolerance for the subjectivity of pain is part of a specific American culture of pain in which a variety of actors take part, including not only physicians and health care providers, but also pain sufferers, caregivers, and policymakers. Concentrating primarily on bioethics, history, and public policy, the book brings a truly interdisciplinary approach to an urgent practical ethical problem. Taking up the practical challenge, the book culminates in a series of policy recommendations that provide pathways for moral agents to move beyond contests over drug policy to policy arenas that, based on the evidence, hold more promise in their capacity to address the devastating and inequitable undertreatment of pain in the US. (shrink)

This monograph consists of five parts: (1) introductory material including a conference overview; (2) papers presented at an international symposium on the topic of ethical issues in disability and rehabilitation as a section of the Annual Conference of the Society for Disability Studies; (3) responses to the symposium, prepared by four of the participants; (4) selected additional papers which offer views from perspectives or cultures not represented at the Denver conference; and (5) an annotated international bibliography. Representatives from 10 countries (...) discussed ethical issues and decision making in disability and rehabilitation. Conference papers include: "Genetic Engineering--The New Eugenics? Evolving Medical Attitudes towards the Quality of Life" (Hugh Gallagher);"Description of the Decision-Making Project" (Daryl Evans); "Treatment and Nontreatment Decisions with Respect to Extremely Premature, Very Low Birthweight Infants (500-750g)" (Ernle Young); "Allocation of Resources and Distributive Justice" (John Mather); "Quality Assurance as an Aid to Ethical Decision Making in Disability Management: Lessons from Recent Ethical Issues Involving Disadvantaged Groups in New Zealand" (Peter Gow); "Disability and Ethical Issues: A Point of View from the Netherlands" (Yolan Koster-Dreese); "Who Shall Live or How Shall They Live? Consumer and Professional Perspectives on Treatment/Non-Treatment Decisions" (Joseph Kaufert and Patricia Kaufert); and "Debates across Social Movements on Reproductive Technologies, Genetic Engineering, and Eugenics" (Theresia Degener). Conference commentaries include: "The Meeting of Disability and Bioethics: A Beginning Rapprochement" (Adrienne Asch); "A Plea for More Dialogue: Commentary on Ethics Conference" (Robert Slater); "Healing Our Wounds" (Martha Lentz Walker); "Theories and Values: Ethics and Contrasting Perspectives on Disability" (Harlan Hahn); and "Current Example of Ethical Dilemma" (Susan Lacetti). Selected additional papers include: "High-tech Medicine Is Basic Care" (Frederick Abrams); "Prevention of Disabilities as a Medical Question" (G. Schioler); "The Ethics of Disability Prevention: A Parent's Point of View" (Mrs. J. Baker); "A Reference Matrix for Issues of Life and Personhood" (Mike Miles); "Nazi Scientists and Ethics of Today" (Isabel Wilkerson); "Ethical and Policy Issues in Rehabilitation Medicine (Hastings Center Report)" (Arthur Caplan et al.); and "Differing Approaches to Prevention of Disability and Treatment of Impaired Infants Creates Controversies Worldwide" (Barbara Duncan). (JDD). (shrink)

The global increase in patients with chronic conditions has led to increased interest in ethical issues regarding such conditions. A basic biomedical principle—respect for autonomy—is being reexamined more critically in its clinical implications. New accounts of this basic principle are being proposed. While new accounts of respect for autonomy do underpin the design of many public programs and policies worldwide, addressing both chronic disease management and health promotion, the risk of applying such new accounts to clinical setting remain understudied. However, (...) the application of new accounts of respect for autonomy to clinical settings could support disrespectful attitudes toward or undue interference with patients with chronic conditions. Reconsidering autonomy and respect using Kantian accounts, this paper proposes respect for persons as an alternative basic bioethical principle to respect for autonomy. Unlike the principle of respect for persons in the Belmont Report, our principle involves respecting any patient’s decisions, behaviors, emotions, or life-style regardless of his or her “autonomous” capabilities. Thus, attitudes toward patients should be no different irrespective of the assessment of their decisional or executive capabilities. (shrink)

Metacognitions, which are beliefs about our own thinking processes, can modulate worry and rumination and thereby influence emotional distress. This study aimed to develop a self-report measure of unhelpful pain-related metacognitions which might serve as a clinical and research tool to better understand pain catastrophizing, a significant risk factor for adverse pain outcomes. Two phases of validation are presented. Phase 1 reports on how the Pain Metacognitions Questionnaire (PMQ) was empirically developed through a qualitative study (...) of 20 people with chronic back ( n = 15) or knee ( n = 5) pain in secondary or tertiary care and then validated in a large internet sample of people experiencing pain ( N = 864). Rasch analysis yielded a 21-item scale with two dimensions (positive and negative metacognition) assessing how useful and problematic people believe rumination about pain to be, respectively. In Phase 2, further validation using a new sample ( N = 510) replicated initial findings. Both PMQ subscales have good retest reliability ( r = 0.76, r = 0.72) and internal consistency (0.86, 0.87). They correlate negatively with mindfulness and positively with pain intensity, disability, anxiety, depression, catastrophizing, rumination, and metacognition. The PMQ also predicts unique variance in catastrophizing when other variables are controlled and predicts ‘patient’ status for pain catastrophizing. Sensitivity analysis yielded preliminary suggestions for clinically meaningful cut-offs. Unhelpful pain metacognitions can be validly and reliably measured using a self-report instrument. Future studies using the PMQ might shed new light on pain-related thinking processes to develop better interventions for people prone to worry and rumination about their pain. (shrink)

This article reflects on the relevance and applicability of the Belmont Report nearly four decades after its original publication. In an exploration of criticisms that have been raised in response to the report and of significant changes that have occurred within the context of biomedical research, five primary themes arise. These themes include the increasingly vague boundary between research and practice, unique harms to communities that are not addressed by the principle of respect for persons, and how (...) growing complexity and commodification in research have shed light on the importance of transparency. The repercussions of Belmont's emphasis on the protection of vulnerable populations is also explored, as is the relationship between the report's ethical principles and their applications. It is concluded that while the Belmont Report was an impressive response to the ethical issues of its day, the field of research ethics involving human subjects may have outgrown it. (shrink)

AbstractThe Belmont Report continues to be held in high regard, and most bioethical analyses conducted in recent years have presumed that it affects United States federal regulations. However, the assessments of the report’s creators are sharply divided. Understanding the historic reputation of this monumental report is thus crucial. We first recount the historical context surrounding the creation of this report. Subsequently, we review the process involved in developing ethical guidelines and describe the report’s features. (...) Additionally, we analyze the effect of unfolding events on the subsequent creation of federal regulations, especially on gene therapy clinical trials. Moreover, throughout this paper we evaluate the ethical principles outlined in this report and describe how they overlap with the issue of protecting socially vulnerable groups. Based on the analysis, we conclude that the features of the Belmont Report cannot be considered as having affected the basic sections of the federal regulations for ethical reviews that were made uniform in 1981. Nevertheless, regarding the regulations on gene therapy clinical trials—which were at first expected to be applicable to research involving children—in addition to implementing policies regarding the public review of protocols that passed ethical review, this report’s principles are clearly reflected in the key notes that should have been referred to when the report was created. (shrink)

The problem of inadequate pain management for both terminally ill patients and patients with chronic pain has recently been documented by a number of authors and studies. A 1997 report by the Institute of Medicine, for example, states that “a significant proportion of dying patients and patients with advanced disease experience serious pain, despite the availability of effective pharmacological and other options for relieving most pain.” There are particularly impressive data that pain associated with (...) cancer is not adequately treated.The problem has been attributed to inadequate education of physicians on approaches to pain management and an often misguided belief that prolonged therapy with certain pain medication will lead to addiction; legal obstacles, such as physicians’ fear of criminal prosecution and other disciplinary actions by state licensing boards for overprescribing narcotics; and inadequate insurance coverage as a result of narrow eligibility criteria for hospice care for Medicare beneficiaries, and inadequate reimbursement more generally for pain management and palliative care. (shrink)

Across the world, pain is under-treated in emergency departments. We canvass the literature testifying to this problem, the reasons why this problem is so important, and then some of the main hypotheses that have been advanced in explanation of the problem. We then argue for the plausibility of two new hypotheses: pain's under-treatment in the ED is due partly to an epistemic preference for signs over symptoms on the part of some practitioners, and some ED practices that themselves (...) worsen pain by increasing patients' anxiety and fear. Our argument includes the following logic. Some ED practitioners depart from formal guidance in basing their acute pain assessments on observable features rather than on patient reports of pain. This is potentially due to an epistemic preference for signs over symptoms which aims to circumvent intentional and/or unintentional misrepresentation on the part of patients. However, conducting pain assessments in line with this epistemic preference contributes to the under-treatment of pain in at least three respects, which we detail. Moreover, it may do little to help the practitioner circumvent any intentional misrepresentation on the part of the patient, as we explain. Second, we examine at least four ED practices that may be contributing to the under-treatment of pain by increasing patient anxiety and fear, which can worsen pain. These practices include failing to provide orienting information and partially objectifying patients so as to problem-solve along lines pre-established by modern medical science. We conclude by touching on some potential solutions for ED practice. (shrink)

One of the Belmont Report’s most important contributions was the clear and serviceable distinction it drew between standard medical practice and biomedical research. A less well-known achievement of the Report was its conceptualization of innovative practice, a type of medical practice that is often mistaken for research because it is new, untested, or experimental. Although the discussion of innovative practice in Belmont is brief and somewhat cryptic, this does not reflect the significant progress its authors made (...) in understanding innovative practice and the distinctive ethical issues it raises. This article explores the history and broader context of Belmont’s conception of innovative practice, its strengths and weaknesses, and its contemporary relevance for scholars working in bioethics and health policy. While this conception of innovative practice deserves our attention, it is inherently limited in some important ways. (shrink)

The current debate about physician-assisted suicide and the question of whether patients would ask for such help if their pain were adequately controlled place in sharp focus the issue of undertreated pain. Studies have repeatedly documented the scope of the problem. A 1993 study of 897 physicians caring for cancer patients found that 86 percent of the physicians reported that most patients with cancer are undermedicated for their pain. A 1994 study found that noncancer patients receive even (...) less adequate pain treatment than patients with cancer-related pain, and that minority patients, the elderly, and women were more likely than others to receive inadequate pain treatment. Although the problem of undertreatment of pain is multifaceted, I only address how state medical boards contribute to the problem and suggest possible remedies.The literature on palliative care describes the numerous barriers that impede effective pain management and that result in the inadequate prescribing of pain-relieving drugs for terminally and chronically ill patients. (shrink)

Women’s pain remains underappreciated, undertheorized, and undertreated in both medicine and theology. The ascetic practices of women in pain, however, can help Christians understand and navigate their own pain and suffering, particularly because they are experienced in the context of chronic illness and disability. In what follows, I argue that Christians would do better to view the pain that accompanies disability and chronic illness as a potential resource for spiritual practice rather than an example of sin (...) or evil. I begin with a brief overview of the most common theological explanations for the relationship between disability and sin within contemporary Christian writings on disability. What is often neglected in these conversations is the acknowledgment of pain in the disability experience. Likewise, discussions of evil often attempt to explain the existence of pain and suffering, but rarely address the practical realities of pain. As a way to begin to remedy the lack of attention to the experience of chronic pain for those living with illness and disability, I consider what it would mean to live faithfully with pain by examining the lives of three holy women who provide examples of what it means to interpret, manage, and share their pain within the body of Christ. (shrink)

For decades, the Belmont Report—and the associated regulatory framework it inspired—has been a cornerstone in the ethical conduct of research involving human subjects. Despite its canonic status, t...

With technical sophistication and innovation in the field of medical science, a considerable proportion of medical diagnosis now rely on laboratory analyses, which emphasises the crucial role of laboratory physicians in patient care. Sustaining high ethical standards remains crucial in both clinical biochemistry and laboratory medicine, and several ethical dilemmas are faced by laboratory physicians in day-to-day practice. In a low-resource country like Bangladesh, formal ethics education or ethical framework in laboratory practice is still absent; ethics has not received that (...) much attention it this field. This paper has considered ethical issues encountered during the daily routine work of laboratory physicians and specially focused on the ethical issues encountered during the pre-analytical, analytical and post-analytical phases of laboratory medicine practice and discuss those issues in light of ‘The Belmont Report’ (1978) perspective. It is not intended to be a comprehensive one, rather it aims to complement existing guidelines and documents that are available in some institutions and to offer a framework for addressing ethical issues encountered in the practice of clinical biochemistry and laboratory medicine in Bangladesh. (shrink)

The Belmont Report of the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research was essentially mandated in a public law on July 12, 1974. The publications of this Commission have turned out to be the most influential of all US ethics and bioethics commissions on US public policy and federal regulation. The reason for its influence is that this Commission was allowed—indeed required—to draft federal regulations governing research with vulnerable subjects and to produce (...) a general framework of moral principles that quickly became established as the only framework of general principles of research ethics for the government of the United States.The public law mandated that the... (shrink)

We agree with Saunkeah and colleagues that research ethics principles outlined by the Belmont Report—which guide the procedural basis for “human subjects” research in the United States throu...

The United States, unlike all other industrialized nations, does not have a comprehensive public system for financing health care. Nevertheless, the magnitude of America's public health care financing effort is remarkable. Of the one trillion dollars the United States spent on health care in 1996, almost half, $483.1 billion, was spent by public programs. In 1995, Medicare—our social insurance program for persons over sixty-five and the long-term disabled—overed 37.5 million Americans; Medicaid—our program for indigent elderly and disabled persons and indigent (...) children and their families—covered 36.3 million. In 1996, Medicare and Medicaid spent $203.1 and $147.7 billion, respectively. The payment policies of these massive public health care programs have a profound effect on the provision of health care.Many of the recipients of Medicare and Medicaid suffer pain. In 1994, 376,200 Americans over age sixty-five died of cancer. Virtually all of these would have been Medicare recipients, and as many as 70 percent of them died in unrelieved pain. Nearly four million Americans over sixty-five endured the pain of inpatient surgery in 1995, again nearly all of whom were Medicare recipients. (shrink)

I offer a principled objection to arguments in favour of legalizing non-voluntary euthanasia on the basis of the principle of beneficence. The objection is that the status of death as a benefit to people who cannot formulate a desire to die is more problematic than pain management care. I ground this objection on epistemic and political arguments. Namely, I argue that death is relatively more unknowable, and the benefits it confers more subjectively debatable, than pain management. I am (...) not primarily referring to the claim that it is difficult to make comparisons between live and post-mortem states, but rather to the fact that it is epistemically and metaphysically problematic to impute a “life-worse-than-death” or a state of “suffering-calling-for-death” to people who cannot subjectively wish to die, as though this kind of suffering were a medically observable fact rather than a belief- and value-laden notion. On the contrary, people enduring similar causes of pain may have different experiences of suffering and views on how it affects the worthwhileness of their existence or the desirability of death or of continuing their lives. The projection of a “suffering-calling-for-death” onto infants or people with severe intellectual disabilities may not be indefensible, but it is more controversial than judging that pain management will improve their well-being from the perspective of beneficence. My argument also relies on our society’s liberal endeavour to avoid endorsing unverifiable beliefs about life and death or controversial conceptions of the good life. My goal is not to suggest we should not attend the suffering of cognitively disabled people. On the contrary, I only cast doubt on too quick an assumption that ending their lives is the best way of caring for them, when robust palliative treatments are available. Moreover, I express the concern that a lack of attention to distinctions between “pain-calling-for-relief” and “suffering-calling-for-death” may be based on ableist projections and assumptions. I conclude that it is imperative to continue research into the nature of pain and suffering experienced by individuals with mental or cognitive impairments preventing them from expressing autonomous wishes about the kind of treatment that would most benefit them. (shrink)

We review three possible theoretical mechanisms for the placebo effect: conditioning, expectancy and endogenous opiates and consider the implications of the first two for clinical research and practice in the area of pain management. Methodological issues in the use of placebos as controls are discussed and include subtractive versus additive expectancy effects, no treatment controls, active placebo controls, the balanced placebo design, between- versus within-group designs, triple blind methodology and the double expectancy design. Therapeutically, the possibility of shaping negative (...) placebo responses through placebo sag, overservicing and the use of placebos on their own are explored. Suggestions for using conditioned placebos strategically in conjunction with nonplacebos are made and ways of maximizing the placebo component of nonplacebo treatments are examined. Finally, the importance of investigating the placebo effect in its own right is advocated in order to better understand the long-neglected psychological aspects of the therapeutic transaction. (shrink)

Competitor intelligence, information that helps managers understand their competitors, is highly valued in today's marketplace. Firms, large and small, are taking a more systematic approach to competitor intelligence collection. At the same time, information crimes and litigation over information disputes appear to be on the rise, and survey data show widespread approval of unethical and questionable intelligence-gathering methods. Despite these developments, few corporations address the ethics of intelligence gathering in their corporate codes of conduct. Neither managers nor management educators have (...) paid sufficient attention to this topic. From a review of questionable intelligence-gathering practices reported in various literatures, the author identifies some important ethical principles to help managers draw the line between legitimate and illegitimate methods of information acquisition. The paper also discusses the costs of failure to heed these principles and suggests steps managers can take to provide ethical leadership in this area. (shrink)

Vivre avec la douleur neuropathique chronique lorsqu’elle est prise en charge par la stimulation de la moelle épinière (SME), laquelle est un type de technologie de neuromodulation, est une expérience dans laquelle différents vécus s’enchevêtrent. En m’appuyant sur le travail de terrain de type ethnographique que j’ai mené dans un hôpital néerlandais en 2012, je mobilise un cadre phénoménologique pour m’intéresser aux trois dimensions entrelacées qui constituent un tel vécu. Rendre compte de ce que signifie vivre avec la SME ne (...) peut se faire sans prendre en considération les expériences antérieures avec la douleur neuropathique chronique et avec la douleur neuropathique chronique prise en charge par des médicaments analgésiques. Si elles appartiennent a priori au passé, ces expériences sous-tendent ce qui peut être envisagé, et ce qui est craint, dans le présent et le futur. Alors que la douleur neuropathique chronique et la douleur neuropathique chronique prise en charge par des antalgiques perturbent l’intentionnalité corporelle de celles et ceux qui en font l’expérience (“je ne peux pas”), la SME est vécue comme une “reconstruction du monde,” lequel est, cette fois, défini par “je peux.” Un tel accomplissement n’est cependant ni aisé ni absolu. Au contraire, il exige qu’une attention soutenue soit portée au corps et à ses sensations. De même, bien vivre avec la douleur neuropathique chronique prise en charge par la SME demande un “travail de désenchevêtrement” (Oudshoorn, 2020) vis-à-vis d’autres objets technologiques potentiellement dangereux et vis-à-vis du regard des autres. “Je peux / je ne peux pas” n’est pas un trait du corps douloureux uniquement; il est aussi lié aux effets invalidants de l’environnement sociomatériel, lesquels font émerger des “inadaptations / inadapté.e.s” (Garland-Thomson, 2011). (shrink)

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

Both human research and animal research operate within established standards and procedures. Although the human research environment has been criticized for its sometimes inefficient and imperfect process, reported abuses of human subjects in research served as the impetus for the establishment of the Nuremberg Code, Declaration of Helsinki, and the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research and the resulting Belmont Report. No similar, comprehensive and principled effort has addressed the use of (...) animals in research. Although published policies regarding animal research provide relevant regulatory guidance, these policies have not emerged from the process of specifying consistent and reasoned ethical principles. The lack of a fundamental effort to explore the ethical issues and principles regarding the use of animals in research has led to unclear and disparate policies. Recent studies have increased our understanding of animal cognition and emotion, suggesting that animals' potential for experiencing a wide variety of harms, such as pain and fear, is greater than has been previously appreciated. Furthermore, relationships between methods of captivity and certain laboratory procedures and the resulting adverse physical, social and psychological effects have been established. In light of this information, current protections may need to be reconsidered and modified. This paper explores the historical convergence and divergence in the creation of human and animal research guidelines, as well as opportunities to align ethical frameworks with new scientific discoveries. (shrink)

Recent studies have exposed the startling inadequacy of health care providers knowledge about and practice of effective pain management. For example, in one study, it was reported that 79 percent of a random sample of 454 medical-surgical inpatients experienced pain during hospitalization, and that 58 percent of patients with pain considered the pain horrible or excruciating. In another study, 67 percent of 2,415 randomly selected hospitalized patients had pain during the twenty-four hours prior to being (...) interviewed, and 50 percent reported pain at the time of the interview. In a study of seriously ill hospitalized patients reported in 1996, half of the patients complained of pain, and one-sixth reported that they experienced extremely severe pain at least half the time. According to one literature review, 75 percent of cancer patients have reported suffering pain, and one study estimates that 25 percent of cancer patients die with severe unrelieved pain. Chronic nonmalignant pain has been described as an extremely prevalent problem, and over two-thirds of nursing home residents experience serious pain. (shrink)

This letter responds to the essay “If Not Now, Then When? Taking Disability Seriously in Bioethics,” by Debjani Mukherjee, Preya S. Tarsney, and Kristi L. Kirschner, in the May‐June 2022 issue of the Hastings Center Report.

One barrier to optimal pain management in the neonatal intensive care unit (NICU) is how the healthcare community perceives, and therefore manages, neonatal pain. In this paper, we emphasise that healthcare professionals not only have a professional obligation to care for neonates in the NICU, but that these patients are intrinsically worthy of care. We discuss the conditions that make neonates worthy recipients of pain management by highlighting how neonates are (1) vulnerable to pain and harm, (...) and (2) completely dependent on others for pain management. We argue for a relational account of ethical decision-making in the NICU by demonstrating how an increase in vulnerability and dependence may be experienced by the healthcare community and the neonate’s family. Finally, an ethical framework for decisions around neonatal pain management is proposed, focussing on surrogate decision-making and the importance of compassionate action through both a reflective and an affective empathy. As empathy can be highly motivating against pain, we propose that, in addition to educational programs that raise awareness and knowledge of neonatal pain and pain management, healthcare professionals must cultivate empathy in a collective manner, where all members of the NICU team, including parents, are compassionate decision-makers. (shrink)

The study examines the employment experience of workers with intellectual disability in the hotel sector in Australia. Through a qualitative case study, we interviewed managers and WWID, and held focus groups with supervisors and colleagues at three hotels. We have used the theoretical framework of corporate social responsibility to investigate HR practices that create an ethical climate which promote authentic work experiences for WWID. The study found that participative work practices provide evidence of how WWID fit in at the workplace. (...) When workers are confronted with work-related anxieties, the pragmatic nature of existential authenticity becomes a reality. Our findings reveal that managing workers ethically can lead to more authentic work experiences. In turn, this may promote social inclusion of WWID and improve their reported well-being. (shrink)

The assessment and management of pain is a significant public health problem in the United States. Long-term care facilities face unique barriers and challenges to pain management due to the large population of cognitively impaired residents, little physician contact and poor pain education for nurses and nurse assistants. In addition, common misconceptions about pain and pain treatment in the elderly along with health professional and resident fears of addiction and drug toxicity, add to the problem (...) of pain management. The basic principles of pain treatment in long-term care are identical to all other health care settings – utilizing a combination of drug and non-drug treatments. Recent efforts to institutionalize improved pain management practices, through assessment procedures and defined pain management policies, standards and education programming, is a promising venue for systemically improving pain treatment in long-term care settings. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Reviewed by:Taking Sides: Clashing Views in Death and Dying ed. by William J. Buckley and Karen S. FeldtZoe BernatskyTaking Sides: Clashing Views in Death and Dying Selected, edited, and with introduction by William J. Buckley and Karen S. Feldt new york: mcgraw-hill, 2013. 576 pp. $63.00If you are searching for a textbook that inspires students to think critically by examining diverse positions around contemporary bioethics issues related to death (...) and dying, Taking Sides: Clashing Views in Death and Dying is an engaging and effective learning tool that is well structured and a compelling read. As part of a series of Taking Sides textbooks, this volume examines eighteen issues clustered around seven themes: (1) end-of-life decision making; (2) caregiver end-of-life decision making; (3) treatment requests and decisions regarding pain and futility; (4) assisted suicide; (5) determining definitions of death; (6) hospice, policy, and costs of dying; and (7) dying and death as cultural performances. Units for each theme include an introduction, pro and con arguments, a summary, and a list of additional resources.The book offers a wealth of wisdom through thought-provoking scenarios, forward-looking themes, and scholarly articles. Readers are presented with real-life controversies, such as how depression or advanced directives influence the [End Page 214] end-of-life decision-making process, and how advocates affect the quality of end-of-life care. Other topics covered include the right to effective pain management, the use of palliative sedation for intractable symptoms, and withholding or withdrawing futile treatment including artificial nutrition and hydration. Also debated are concerns surrounding the provision of assisted suicide and the criteria for establishing brain death; issues regarding access to hospice; the impact of identifying with a specific religious orientation; and the reception of culturally competent care.Individuals are often forced abruptly into end-of-life decisions without time for extensive reflection about the meaning of life and death. The weightiness of the outcomes and the intensity of the experience, combined with the apprehension so many of us feel about death and dying, can overwhelm individuals and families. This book promotes thoughtful deliberation about such matters from both professional and personal perspectives. The inclusion of a section on caregiver decision making that highlights compassion fatigue is a unique and valuable contribution to the overall topic. Social, cultural, and religious influences that increase comfort (or pain) in dying patients and the unique experience of grief for those who remain are also given attention.The greatest strength of this text is the “Taking Sides” approach, which introduces the reader to divergent positions on ethical issues. The articles are well selected from recent scholarship and orient readers who may be unfamiliar with medical and ethical terminology and concepts. The presentation of contradictory positions demonstrates the true-to-nature complexity of ethical decisions and inspires the reader to further reflection, and the extensive list of resources provides a rich opportunity for further study. The book is an easy read, and the units and themes can be surveyed independently, making it a helpful resource for introductory courses on moral theology or ethics; a digital “Instructor’s Resources Guide” provides sample questions for academic purposes. Since death and dying is a universal issue, the anticipated audience is extensive.While this text provides an excellent introduction to the ethical dilemmas around death and dying, there are particular areas that are not addressed, such as decision-making in the case of neonates, children, or those with preexisting psychiatric disorders or other disabilities. A valuable addition to the book would have been the presentation of a framework for dealing with the complex challenges of death and dying, such as the virtue ethics framework offered by Lydia Dugdale in the 2015 publication Dying in the Twenty-First Century. But although the book does not add new material to existing debates, the clarity with which it presents each argument will help to orient those less familiar with bioethical issues. [End Page 215]Zoe BernatskyNewman Theological CollegeCopyright © 2016 Society of Christian Ethics... (shrink)

End-of-life decision making is fraught with ethical challenges. Withholding or withdrawing life support therapy is widely considered ethical in patients with high treatment burden, poor premorbid status, or significant projected disability even when such treatment is not ?futile.? Whether such withdrawal of therapy in the aftermath of attempted suicide is ethical is not well established in the literature. We provide a clinical vignette and propose criteria under which such withdrawal would be ethical. We suggest that it is appropriate to withdraw (...) life support, regardless of the cause of the critical illness or disability, when the following criteria are met: (1) Surrogates request withdrawal of care and the adequacy of surrogates is confirmed, (2) an external reasonability standard is met, (3) passage of time, perhaps 72 hours, to allow certainty regarding the patient's wishes, and (4) psychiatric morbidity should be considered as grounds for withdrawal only in truly treatment-refractory cases. Fundamentally, we believe the question to ask is, ?If this were not an attempted suicide, would a request to withdraw care be reasonable?? We believe that under these circumstances, such withdrawal of life support, even in an individual who has attempted suicide, does not constitute physician assistance with suicide and is distinct from physician aid-in-dying in several important respects. (shrink)

Disability scholars have critiqued medical models that pathologize disability as an individual flaw that needs treatment, rehabilitation, and cure, favoring instead a social-constructionist approach that likens disability to other identity categories such as gender, race, class, and sexuality. However, the emphasis on social constructionism has left chronic illness and pain largely untheorized. This article argues that feminist disability studies must attend to the common, chronic gynecological condition endometriosis when theorizing pain. Endo is particularly important for FDS analysis because (...) the highly feminized and sexualized nature of endo pain is a major source of disability. Because medical treatments of endo enhance fertility rather than provide pain relief, those with endo must not only have access to medical services to manage their pain, but also demand better medical management of their pain as well as disability accommodations for their pain. Thus, I propose a pain-centric model of disability that politicizes pain through social-constructionist and medical models of disability by attending to the lived experiences of pain. (shrink)

The deeply entrenched, sometimes heated conflict between the disability movement and the profession of bioethics is well known and well documented. Critiques of prenatal diagnosis and selective abortion are probably the most salient and most sophisticated of disability studies scholars’ engagements with bioethics, but there are many other topics over which disability activists and scholars have encountered the field of bioethics in an adversarial way, including health care rationing, growth-attenuation interventions, assisted reproduction technology, and physician-assisted suicide. The tension between the (...) analyses of the disabilities studies scholars and mainstream bioethics is not merely a conflict between two insular political groups, however; it is, rather, also an encounter between those who have experienced disability and those who have not. This paper explores that idea. I maintain that it is a mistake to think of this conflict as arising just from a difference in ideology or political commitments because it represents a much deeper difference—one rooted in variations in how human beings perceive and reason about moral problems. These are what I will refer to as variations of moral psychology. The lived experiences of disability produce variations in moral psychology that are at the heart of the moral conflict between the disability movement and mainstream bioethics. I will illustrate this point by exploring how the disability movement and mainstream bioethics come into conflict when perceiving and analyzing the moral problem of physician-assisted suicide via the lens of the principle of respect for autonomy. To reconcile its contemporary and historical conflict with the disability movement, the field of bioethics must engage with and fully consider the two groups’ differences in moral perception and reasoning, not just the explicit moral and political arguments of the disability movement. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:When Is Enough, Enough?Megan HomsyThis was a case that stuck with many members of our transplant team for a long time. The patient was a 44-year-old Caucasian male evaluated for a liver transplant with a diagnosis of hepatitis C virus (HCV), originally diagnosed 11 years before the transplant evaluation. The patient met the criteria for the following substance use diagnoses: alcohol use disorder moderate in sustained remission, in a (...) controlled environment, opioid use disorder, severe, in sustained remission, on maintenance therapy, in a controlled environment, stimulant use disorder, amphetamine-type, severe, in early remission, in a controlled environment and stimulant use disorder, cocaine-type, severe in early remission, in a controlled environment.The patient had been living in a sober living housing program for approximately ten months prior to his transplant evaluation with me, his social worker. He had also been diagnosed with depression and bipolar disorder. He had been intermittently linked with mental health services and had participated in numerous detox and substance abuse programs over the last ten years, with varying degrees of success. He was in dual diagnosis treatment (i.e., treatment for co-occurring substance use and mental health disorders) through his Suboxone clinic and was completing toxicology screenings on a biweekly basis.After concluding the minimum three months of drug and alcohol treatment set forth by the state's Organ Transplantation Consortium, the patient graduated from his sober living program, moved in with his sister, and was listed for a liver transplant.The patient was transplanted five months after his clinic evaluation. At the time of the surgery, the patient's Suboxone was abruptly discontinued and replaced with IV Dilaudid. Within days of his transplant, the patient frequently expressed concerns about his pain. Several medical services attempted to manage the pain medications, resulting in his pain management plan being changed repeatedly and much confusion over his current medication regimen. During his liver transplant hospitalization, the RN found the patient with a needle in his arm, and after a search of the patient's hospital room, the hospital police found drug paraphernalia and illicit substances. The patient was eventually discharged to an inpatient substance abuse program, which he left before completing the program and against medical advice.During his first year post-transplant, I attempted to arrange other various treatment programs for him (most of which he did not follow through with) and to find housing for him (as he had been forced to leave his sister's home after his relapse). Eventually, the patient was incarcerated on drug-related charges. Numerous times, the patient missed completing his labs and his post-transplant appointments. He did not refill his immunosuppressant medications, and for lengthy periods of time, he was unreachable by the transplant care team, which resulted in my team members and I calling the patient's family, other providers, and the police for safety checks.In the aftermath of these issues, my colleagues and I had to reckon with the realization that we had failed the patient. As a team, our transplant center created a task force to review this case and what to do in the future to prevent such breakdowns in patient care. We created protocols for managing patients who, at the time of their transplant, are on Medication Assisted Treatment (MAT) such as Suboxone and methadone. Staff across the multidisciplinary team attended trainings regarding addiction, pain management, and best practices for MAT services. Additionally, our transplant center collaborated with our hospital's addiction treatment program for a streamlined referral process for transplant patients to addiction services.This patient's case and its sensational nature resulted in many conversations, both professional and unprofessional. Members of the social worker department became aware that personnel within transplant, though not involved in patient care, were inappropriately discussing this patient's case and engaging in unprofessional behavior. Said actions led to the termination of a member of the transplant team. I was placed in the unenviable [End Page E3] position of having to report this behavior to hospital management and legal teams to protect a vulnerable patient.The ethical challenge behind this case really stems from the transplant team attempting to balance two... (shrink)

Sickle cell disease describes an inherited group of blood disorders that affect the lives of more than 4 million people around the globe. More than 43 million additional people are believed t...

When the Belmont Report was published in 1979, the European research ethics community was very small, even if we take this community to include everyone who was working in research ethics academically or professionally, and the report itself made very little impact in European medical journals.1 If we try to trace Belmont’s later reception history in Europe and in much of the bioethics literature worldwide, we find that it is most often quoted either as a landmark (...) in the history of research ethics, without any further explication of its actual content; as a forerunner of the principle-based approach to biomedical ethics developed by Tom Beauchamp and James Childress in The Principles of Biomedical Ethics ; or... (shrink)

The Belmont Report has had an enormous influence on the ethics of biomedical research over the last several decades. It has served as a philosophical foundation for federal regulations governing human subjects research, and its principles are well known to individuals across the research enterprise. Given the outsized influence Belmont has enjoyed as a core document in bioethics, it is worth reminding ourselves of the historical context in which it came to be. In this article, we examine (...) the societal forces that helped bring about the Belmont Report and that shaped its conception of ethical research. In turn, we set the stage for discussions on whether Belmont remains applicable as the research enterprise... (shrink)

Background: Chronic Pain (CP) has serious medical and social consequences, and leads to economic burden that threatens the sustainability of healthcare services. Thus, optimized management of pain tools to support CP patients in adjusting to their condition and improving quality of life is timely. Although Acceptance and Commitment Therapy (ACT) is considered an evidence-based psychological approach for CP, evidence for the efficacy of online-delivered ACT for CP is still scarce. At the same time, studies suggest that self-compassion mediates (...) the change in disability and psychopathological symptoms in ACT interventions for CP, although self-compassion is not a specific target in ACT. Thus, an explicit focus on self-compassion might increase the efficacy of ACT interventions for CP, although this hypothesis has not been tested. This study aims to develop an eHealth ACT and compassion-based self-management intervention for CP, the iACTwithPain, and to compare its efficacy in improving health outcomes to a similar ACT-only intervention and a waiting list group. Methods: The eHealth platform that will host the interventions will be developed using a flat design identity and will be interactive. The iACTwithPain intervention will comprise 8 weekly self-management sessions, and will be developed taking into consideration the psychological flexibility model applied to CP, with the addition of explicit compassion-based components. To analyse whether the iACTwithPain intervention will present superiority in improving CP’s impact and related health markers over the two other conditions, this study will follow a RCT design with three arms. CP patients will be recruited through direct contact with patient associations and healthcare services and a national press release in Portugal. Outcome measurement will be conducted at baseline, post-intervention and at 3- and 6-months follow-ups. The interventions’ acceptability will also be assessed. Discussion: The iACTwithPain intervention is expected to improve CP patients’ psychosocial functioning, quality of life, and empowerment, by promoting adaptive disease management and regulation of pain-related internal experiences. Results will contribute to a better understanding on the pertinence of adding compassion elements to ACT for CP and to reach an optimized intervention for CP. (shrink)

Disabling pain or symptoms can occur at any age from many different causes. Pain and palliative specialists are able to relieve most pain and symptoms, although repeated adjustments to modalities, medications and doses may be needed. Because pain and palliative specialists comprise only a small percentage of physicians, many patients find it difficult to access them or obtain pain relief. Globally, there are too few such specialists to meet existing needs. Most are affiliated with hospice (...) and palliative units, so their accessibility to patients without terminal conditions is negligible. Doctors outside pain and palliative specialties are often unfamiliar with pain guidelines and sceptical about patient reports of unrelieved pain. They are therefore likely to undertreat it. Undertreating pain, however, violates respect for persons and beneficence. This paper reviews literature supporting these claims and offers a narrative description of the author’s attempts to find relief from shingles and postherpetic neuralgia. It argues that physicians in most specialties are not, but should be, familiar with palliative evidence and guidelines so that they are equipped to relieve pain and symptoms quickly and effectively. Such information should be routinely introduced in medical curricula to encourage the mastery of knowledge, attitudes and skills necessary to upholding ethical principles and to ensure that more doctors in any discipline are willing to believe and be compassionate to patients whose pain is unresponsive to initial treatments. Routinely exposing students to such information would better prepare them to fulfil their professional duties to patients and society. (shrink)

The distinction between clinical research and clinical practice directs how we partition medicine and biomedical science. Reasons for a sharp distinction date historically to the work of the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, especially to its analysis of the “boundaries” between research and practice in the Belmont Report (1978). Belmont presents a segregation model of the research-practice distinction, according to which research and practice form conceptually exclusive sets of activities (...) and interventions. This model is still the standard in federal regulations today. However, the Commission’s deliberations and conclusions about the boundaries are more complicated, nuanced, and instructive than has generally been appreciated. The National Commission did not conclude that practice needs no oversight comparable to the regulation of research. It debated the matter and inclined to the view that the oversight of practice needed to be upgraded, though the Commission stopped short of proposing new regulations for its oversight, largely for prudential political reasons. (shrink)

Book reviewed in this article: Gays/Justice by Richard Mohr. Death:Beyond Whole‐Brain Criteria, edited by Richard M. Zaner. The Contraceptive Ethos:Reproductive Rights and Responsibilities Edited by S.F. Spicker, W.B. Bondeson, H.T. Englehardt, Jr., Dordrecht, Holland:D. Reidel. Made to Order:The Myth of Reproductive and Genetic Progress Edited by Patricial Spallone and Deborah Lynn Steinberg. Reproductive Technologies:Gender, Motherhood and Medicine Edited by Michele Stanworth. For the Patient's Good:The Restoration of Beneficence in Health Care by Edmund D. Pellegrino and David C. Thomasma. ‘The Physician (...) as Captain of the Ship:A Critical Reappraisal’, Philosophy and Medicine, vol. 29. Edited by Nancy M.P. King, Larry R. Churchill, and Alan W. Cross. (shrink)

The article presents and analyzes different approaches of U.S. bioethicists in comprehending the Nazi medical crimes after 1945. The account is divided into two sections: one dealing with discussions on research ethics and the Nuremberg Code up until the 1970s and the other ranging from the 1970s to the present and highlighting bioethics' engagement with Nazi analogies. The portrayal of different bioethical scholars, institutions, and documents—most notably Henry K. Beecher, Jay Katz, the Belmont Report, the Hastings Center, Arthur (...) L. Caplan, and Robert M. Veatch—provides a nuanced interpretation of the motives that bioethicists held and the strategies that they applied to establish an understanding of the Nazi medical crimes and their relation to contemporary bioethical issues. In this, the different approaches shared a common goal: To integrate the Nazi medical crimes into an ethical framework by means of selective acknowledgments and representation of their history. (shrink)

Hastings Center Report, Volume 52, Issue 3, Page 37-48, May–June 2022.

This invaluable resource presents a state-of-the-art account of the psychology of pain from leading researchers. It features contributions from clinical, social, and biopsychological perspectives, the latest theories of pain, as well as basic processes and applied issues. The book opens with an introduction to the history of pain theory and the epidemiology of pain. It then explores theoretical work, including the gate control theory/neuromatrix model, as well as biopsychosocial, cognitive/behavioral, and psychodynamic perspectives. Issues, such as the (...) link between psychophysiological processes and consciousness and the communication of pain are examined. Pain over the life span, ethno-cultural, and individual differences are the focus of the next three chapters. Pain: Psychological Perspectives addresses current clinical issues: * pain assessment and acute and chronic pain interventions; * the unavailability of psychological interventions for chronic pain in a number of settings, the use of self-report, and issues related to the implementation of certain biomedical interventions; and * the latest ethical standards and the theories. Intended for practitioners, researchers, and students involved with the study of pain in fields such as clinical and health psychology, this book will also appeal to physicians, nurses, and physiotherapists. Pain is ideal for advanced courses on the psychology of pain, pain management, and related courses that address this topic. (shrink)

A literature review of 98 articles concerning clinical pain research in newborn infants was conducted to evaluate how researchers report the ethical issues related to their studies and how journals guide this reporting. The articles were published in 49 different scientific journals. The ethical issues most often mentioned were parental informed consent (94%) and ethical review approval (87%). In 75% of the studies the infants suffered pain during the research when placebo, no treatment or otherwise inadequate (...) class='Hi'>pain management was applied. Discussion about benefits versus harm to research participants was lacking. A quarter of the journals did not have any ethical guidelines for submitted manuscripts. We conclude that ethical considerations did not play a significant role in the articles studied. Missing and superficial guidelines enable authors to offer studies with fragile research ethics. (shrink)