Clinical ethics consultation services: public-facing information on NCI-designated cancer center websites.

Clinical ethics consultation services (CECS) can be particularly complex in oncology, and widespread misconceptions exist about their nature. As a result, visibility and accessibility of information regarding CECS is critical. We investigated the availability and content of information regarding CECS on websites of NCI-designated comprehensive cancer centers and cancer centers (CCs). Each website was reviewed for information on CECS and reviewed for benchmarks partially derived from the American Society of Bioethics and Humanities recommendations for CECS. Our analysis revealed that of 70 NCI-designated center websites, 38 had information on CECS, and 17 were found directly on these sites. When CECS information was available, most websites provided a mission statement (71%) and an explanation of what constitutes an ethics consult (74%). Few provided a description of the consult process (45%) or service membership (39%). Our findings reveal a significant gap in CECS visibility on the websites of NCI-designated CCs.

[The Basel model of principle-oriented clinical ethics consultation 2.0 : An introduction for psychiatry]. / Das Basler Modell der prinzipienorientierten klinischen Ethikkonsultation 2.0 : Eine Einführung für die Psychiatrie.

BACKGROUND: The effectiveness of clinical ethics counselling in medicine in terms of satisfaction of the participants, support of ethical decision-making, perceived impact on clinical care, moral competence and quality of communication is now empirically well validated. In psychiatry, more and more institutions have structures for clinical ethics consultation as well; however, there is still a lack of evaluative accompanying research on the benefits and differential indications of the various forms and models of clinical ethics counselling in psychiatry. AIM OF THE WORK: The article presents the principles and the step by step application of the principle-oriented clinical ethics consultation according to the Basel model 2.0. MATERIAL AND METHODS: The article is based on material and procedures developed at the Clinical Ethics Unit of the University Hospital Basel and the University Psychiatric Clinics Basel for the principle-oriented clinical ethics consultation according to the Basel model 2.0. RESULTS AND DISCUSSION: Principle-oriented clinical ethics consultation according to the Basel model 2.0 is suitable for dealing with moral issues and conflicts in psychiatric practice and for their ethical reflection; however, further evaluative accompanying research is needed on the benefits and differential indications of this and other models of clinical ethics support in psychiatry.

Factors associated with Saudi physicians' utilization of clinical ethics consultation services.

Clinical Ethics Consultation (CEC) aims to resolve ethical dilemmas at the bedside. Through a structured process, CEC allows practitioners and patients to consult ethicists at times of moral conflict or uncertainty. Over the past few decades, CEC has become an invaluable part of healthcare practice. In Saudi Arabia, however, CEC services remain inexplicably underutilized. This study attempts to understand the factors associated with Saudi physicians' utilization of CEC to better meet the needs of practitioners and patients. Results indicate that although physicians routinely experience moral dilemmas, they seldom request a CEC. This is not due to unfamiliarity, lack of accessibility, or suspicion of ethical expertise. Rather, reluctance is likely due to an ingrained medical cultural stronghold that pressures practitioners to act heroically, and to resolve ethical dilemmas independently. Recommendations to improve the utilization of CEC services include wider availability, active collaborations with clinical practitioners, routine quality improvements, and managerial and national support.

Toward a new clinical pragmatism: method in clinical ethics consultation.

In this paper, I leverage the pragmatist tradition in philosophy, the collective wisdom of scholarship in clinical ethics consultation, and earlier attempts to apply pragmatism in clinical ethics to develop a new vision of clinical ethics practice called New Clinical Pragmatism. It argues that clinical ethics methodology, from the New Clinical Pragmatist's perspective, amounts to the recommendation that consultants should customize a methodological approach, drawing on the various available methods, depending on the demands of the specific case, and should avoid attempts to identify a 'true' methodology but to the incoherence and inevitable failure of those attempts. I argue that pragmatism's emphasis on practical wisdom and experimentation allow the New Clinical Pragmatist to do this while avoiding irrationality in choosing methods. I discuss how the New Clinical Pragmatist gives a unique, constructive perspective on key aspects of clinical ethics consultation such as the choice of common morality vs. internal morality of medicine approaches, process standards, bioethics mediation, and narrative ethics, and suggest how New Clinical Pragmatism's relaxed approach to choice of methodology encourages consultants to balance attention to the particulars of the case with knowledge of what the many insightful scholars of clinical ethics methodology have found useful in the past. I also argue that New Clinical Pragmatism is consistent with efforts to professionalize clinical ethics consultation.

Everyday Clinical Ethics: Essential Skills and Educational Case Scenarios.

Bioethics conjures images of dramatic healthcare challenges, yet everyday clinical ethics issues unfold regularly. Without sufficient ethical awareness and a relevant working skillset, clinicians can feel ill-equipped to respond to the ethical dimensions of everyday care. Bioethicists were interviewed to identify the essential skills associated with everyday clinical ethics and to identify educational case scenarios to illustrate everyday clinical ethics. Individual, semi-structured interviews were conducted with a convenience sample of bioethicists. Bioethicists were asked: (1) What are the essential skills required for everyday clinical ethics? And (2) What are potential educational case scenarios to illustrate and teach everyday clinical ethics? Participant interviews were analyzed using qualitative content analysis. Twenty-five (25) bioethicists completed interviews (64% female; mean 14.76 years bioethics experience; 80% white). Five categories of general skills and three categories of ethics-specific skills essential for everyday clinical ethics were identified. General skills included: (1) Awareness of Core Values and Self-Reflective Capacity; (2) Perspective-Taking and Empathic Presence; (3) Communication and Relational Skills; (4) Cultural Humility and Respect; and (5) Organizational Understanding and Know-How. Ethics-specific skills included: (1) Ethical Awareness; (2) Ethical Knowledge and Literacy; and (3) Ethical Analysis and Interaction. Collectively, these skills comprise a Toolbox of Everyday Clinical Ethics Skills. Educational case scenarios were identified to promote everyday ethics. Bioethicists identified skills essential to everyday clinical ethics. Educational case scenarios were identified for the purpose of promoting proficiency in this domain. Future research could explore the impact of integrating educational case scenarios on clinicians' ethical competencies.

The ethics of overriding patient refusals during 5150s and other involuntary psychiatric holds.

Involuntary psychiatric holds, such as the 5150 hold in California, allow for an individual to be taken into custody for evaluation and treatment for up to 72 h when they present a risk of danger to themselves. 5150s and other coerced holds present a bioethical tension as patient autonomy is overridden to provide psychiatric care. I discuss two arguments that aim to provide ethical justifications for overriding patient autonomy during 5150 holds: the "clinical benefit" and "lack of capacity" arguments. By demonstrating that these arguments do not always hold, I argue that overriding patient autonomy during 5150 holds is not always ethical and can be harmful. Lastly, I make recommendations for the 5150 and similar involuntary psychiatric holds to minimize harmful breaches of patient dignity: creating consistent field guidelines for assessing prehospital capacity, educating prehospital providers about the potential harms of 5150s, and utilizing existing support structures within the social context of the patient when they have capacity to refuse further prehospital care.

Balancing ethical norms and duties for the introduction of new medicines through conditional marketing authorization: a research agenda.

The European Medicines Agency's conditional marketing authorization (CMA) aims to expedite patient access to medicines for unmet medical needs by shifting a part of the drug development process post-authorization. We highlight ethical issues surrounding CMA, comprising (i) the complexity of defining unmet medical need; (ii) poor understanding of CMA and its impact on informed consent; (iii) hope versus unrealistic optimism; (iv) implications of prolonged post-authorization studies and potential patient harm; (v) rights and duties of patients surrounding participation in post-authorization studies; (vi) access to previously authorized CMA medicines; and (vii) the "benefit slippage" phenomenon, defined as the gradual shift of strict criteria to less strict criteria. We propose a comprehensive research agenda to address these ethical issues, and stress the need for multi-stakeholder engagement to ensure patient-centered use of CMA.

Managing the Labyrinth of Complex Ethical Issues in Anesthesia Practice: The Anesthesiologist's Ariadne's Thread.

Facing ethical dilemmas is challenging and sometimes becomes a real burden for anesthesiologists, particularly because they rarely have previous or long-standing patient relationships that help inform clinical decision-making. Although there is no ideal algorithm that can fit all clinical situations, some basic moral and ethical principles, which should be part of every clinician's armamentarium, can guide the decision-making process. Dealing with conflicting views among providers and/or patients can be distressing but can lead to meaningful professional and personal growth for each clinician.

Better Conversations for Better Informed Consent: Talking with Surgical Patients.

For more than sixty years, surgeons have used bioethical strategies to promote patient self-determination, many of these now collectively described as "informed consent." Yet the core framework-understanding, risks, benefits, and alternatives-fails to support patients in deliberation about treatment. We find that surgeons translate this framework into an overly complicated technical explanation of disease and treatment and an overly simplified narrative that surgery will "fix" the problem. They omit critical information about the goals and downsides of surgery and present untenable options as a matter of patient choice. We propose a novel framework called "better conversations." Herein, surgeons provide context about clinical norms, establish the goals of surgery, and comprehensively delineate the downsides of surgery to generate a deliberative space for patients to consider whether surgery is right for them. This paradigm shift meets the standards for informed consent, supports deliberation, and allows patients to anticipate and prepare for the experience of treatment.

Is Suffering a Useless Concept?

"Suffering" is a central concept within bioethics and often a crucial consideration in medical decision making. As used in practice, however, the concept risks being uninformative, ambiguous, or even misleading. In this paper, we consider a series of cases in which "suffering" is invoked and analyze them in light of prominent theories of suffering. We then outline ethical hazards that arise as a result of imprecise usage of the concept and offer practical recommendations for avoiding them. Appeals to suffering are often getting at something ethically important. But this is where the work of ethics begins, not where it ends.

Minors Lack the Autonomy to Consent to Gender-Affirming Care: Best Interests Must Be Primary.

What ethically justifies the provision of invasive and irreversible treatments to minors? In this commentary, I examine this question in response to Moti Gorin's article "What Is the Aim of Pediatric 'Gender-Affirming' Care?," which critiques autonomy-based arguments for justification of gender-affirming care in minors. Minors generally lack sufficient autonomy to make significant medical decisions or major life decisions. For this reason, parents are generally their decision-makers, working with medical professionals to choose treatments that serve the best interests of the minor. Medical care in minors is justified by beneficence, not autonomy, and this should be no different for gender-affirming care. This severely undermines autonomy-based arguments for provision of gender-affirming care to minors. Given the lack of conclusive evidence for benefit, the nature of the treatment, and the fact that gender dysphoria in minors resolves spontaneously in most cases, there is presently insufficient justification for provision of such care to minors.

Values and Evidence in Gender-Affirming Care.

This commentary responds to the article "What Is the Aim of Pediatric 'Gender-Affirming' Care?," by Moti Gorin, in the same issue of the journal. Gender-affirming care is often treated as exceptional and subject to heightened scrutiny. This exceptionalization results in its being held to stricter evidentiary standards than other forms of medical interventions are. But values and value judgments are inextricable from the practice of evidence-based medicine. For gender-affirming care, values shape what counts as "strong" evidence, whether the legitimacy of transgender identity is assumed versus treated as something to be investigated, how to characterize the testimonial accounts of trans and gender-nonconforming patients, and more. We argue that these kinds of questions are part of the practice of medicine, not exceptional to transgender people and gender-affirming care. However, litigation of evidence for gender-affirming care in state and national policy underscores the moral urgency of thinking carefully about what values ought to guide evidence.

The Structure of Clinical Ethical Decision-Making: A Hospital System Needs Assessment.

Bioethical dilemmas can emerge in research and clinical settings, from end-of-life decision-making to experimental therapies. The COVID-19 pandemic raised serious ethical challenges for healthcare organizations, highlighting the need to conduct needs assessments of the bioethics infrastructures of healthcare organizations. Clinical ethics committees (CECs) also create equitable policies, train staff on ethics issues, and play a consultative role in resolving the difficulty of complex individual cases. The main objective of this project was to conduct a needs assessment of the bioethics infrastructure within a comprehensive hospital system. A cross-sectional anonymous online survey, including quantitative and qualitative formatted questions. The survey was sent to five key leaders from the organization's hospitals. Survey questions focused on the composition, structure, function, and effectiveness of their facilities' bioethics infrastructure and ethics-related training and resources. Positive findings included that most facilities have active CECs with multidisciplinary membership; CECs address critical issues and encourage team members to express clinical ethics concerns. Areas of concern included uncertainty about how CECs function and the process for resolving clinical ethics dilemmas. Most reported no formal orientation process for CEC members, and many said there was no ongoing ethics education process. The authors conclude that if CECs are a critical institutional resource where the practice of medicine and mission intersect, having well-functioning ethics committees with trained and oriented members demonstrates an essential commitment to the mission. The survey revealed that more needs to be done to bolster the bioethics infrastructure of this institution.

Examining ethical issues that arise in providing ED/hospital care for patients experiencing elder mistreatment and approaches to address them.

Clinicians in the emergency department and hospital who treat patients experiencing elder mistreatment (EM) can expect to encounter challenging ethical dilemmas. Collaboration with ethics and EM consultation services offers teams an important opportunity to improve patient-centered outcomes and address value-based concerns when treating these patients. This article describes the role of a hospital clinical ethics consultation service and best practices for collaboration between ethics and EM consultation services. Illuminated via four case studies, the article presents several core ethical frameworks, including allowing patients the dignity of risk, considerations around a harm reduced discharge, involving abusers in surrogate decision making, and providers' experience of moral distress when dealing with patients experiencing EM. Increasing collaboration with ethics and elder mistreatment services can help teams more effectively respond to EM.

[Human dignity and autonomy in medicoethical decisions at the end of life]. / Menschenwürde und Autonomie bei medizinethischen Entscheidungen am Lebensende.

Respect of human dignity is an unquestionable part of daily clinical routine as well as of evaluations in medical ethics. Some aspects of human dignity are a subject of transformation in the course of a lifetime. If the ability to form a will is reduced, it might be difficult to satisfy the individual perception of a dignified treatment, which is of particular interest in terminal care. As illustrated by the presented case report, moral problems can arise when the patient's present verbal or non-verbal expressions are opposed to what is documented or what is estimated by dependants to be the individual's will. In clinical decision-making processes, the determination of the will via an advance directive can be overstated, which can go so far that human dignity is reduced to autonomy. A concept of dignity reduced to autonomy misses the point not only of a dignity-centered medical care but also of shared decision-making. In situations at the end of life other aspects, such as authenticity or self-actualization should be considered when respecting the individual's dignity. Medicine should as such not marginalize death but provide a care based on principles that focus on human interaction and respect for a comprehensive concept of dignity.

Scoping review of end-of-life care for persons with anorexia nervosa.

BACKGROUND: End-of-life (EOL) care is the part of palliative care intended for persons nearing death. In anorexia nervosa (AN), providing EOL care instead of coercing life-sustaining measures is controversial. The existing literature has not been synthesized yet. To clearly delineate differing views and identify open questions as well as areas of possible consensus, we conducted the first-ever synthesis of the existing literature. METHODS: We searched EMBASE, PubMed, PsycInfo, and Web of Science for scientific publications on forgoing coerced life-sustaining measures and/or providing EOL care for persons with AN who refuse life-sustaining measures, typically artificial nutrition. Palliative care outside of the EOL context and medical assistance in dying were not reviewed. As very little quantitative studies were identified, we qualitatively analyzed conceptual questions, ethical reasoning, legal aspects, stakeholder attitudes, practical aspects, stakeholder needs, and outcome. RESULTS: We identified 117 eligible publications from 1984 to 2023, mainly case reports (n=26 different cases) and ethical analyses. Conceptualizations of key terms such as terminality, futility, and decision-making capacity (DMC) in AN varied widely and were often value-laden and circular. Ethical reasoning centered on weighing the preservation of life versus quality of life in the context of uncertainty about DMC and likelihood of clinical remission. Studies on stakeholder attitudes reflected this challenge. In some cases, courts ruled against coerced life-sustaining measures and/or in favor of EOL care for persons with AN. While eligibility criteria were contested, recommendations for deliberating about and providing EOL care were consistent. We identified only one study on stakeholder needs and none on outcome. Case reports described quality of life under EOL care as good and death as the most frequent outcome but engagement in voluntary treatment and (partial) clinical remission in some. CONCLUSIONS: The debate around EOL care in AN needs consented, coherent terminology whose value base is reduced to a minimum and made transparent. While more empirical research into decision-making in AN and predictors of outcome might help reduce uncertainty, fundamental normative questions need to be addressed, for example regarding the ethico-legal significance of treatment refusals, the weighing of quantity versus quality of life and the appropriateness of diagnosis-based ethico-legal exceptionalism such as hard paternalism. More research is needed on outcome of and stakeholder needs in EOL care for persons with AN.

The conceptual injustice of the brain death standard.

Family disputes over the diagnosis of brain death have caused much controversy in the bioethics literature over the conceptual validity of the brain death standard. Given the tenuous status of brain death as death, it is pragmatically fruitful to reframe intractable debates about the metaphysical nature of brain death as metalinguistic disputes about its conceptual deployment. This new framework leaves the metaphysical debate open and brings into focus the social functions that are served by deploying the concept of brain death. In doing so, it highlights the epistemic injustice of medicolegal authorities that force people to uniformly accept brain death as a diagnosis of death based on normative considerations of institutional interests, such as saving hospital resources and organ supplies, rather than empirical evidence of brain death as death, which is insufficient at best and nonexistent at worst. In light of this injustice, I propose the rejection of the uniform standard of brain death in favor of a choice-based system that respects families' individualized views of death.

Neither Ethical nor Prudent: Why Not to Choose Normothermic Regional Perfusion.

In transplant medicine, the use of normothermic regional perfusion (NRP) in donation after circulatory determination of death raises ethical difficulties. NRP is objectionable because it restores the donor's circulation, thus invalidating a death declaration based on the permanent cessation of circulation. NRP's defenders respond with arguments that are tortuous and factually inaccurate and depend on introducing extraneous concepts into the law. However, results comparable to NRP's-more and higher-quality organs and more efficient allocation-can be achieved by removing organs from deceased donors and using normothermic machine perfusion (NMP) to support the organs outside the body, without jeopardizing confidence in transplantation's legal and ethical foundations. Given the controversy that NRP generates and the convoluted justifications made for it, we recommend a prudential approach we call "ethical parsimony," which holds that, in the choice between competing means of achieving a result, the ethically simpler one is to be preferred. This approach makes clear that policy-makers should favor NMP over NRP.

On What Grounds? A Pilot Study of References Used in Clinical Ethics Consultation and Education.

In accordance with standards published by the American Society for Bioethics and Humanities (ASBH), ethics consultants are expected to provide recommendations that align with scholarly literature, professional society statements, law, and policy. However, there are no studies to date that characterize the specific references that ethics consultants and educators use to inform their work. To address this gap, a convenience sample of clinical ethics consultants and educators was surveyed online through two major listservs for clinical ethics, the ASBH Clinical Ethics Consultation Affinity Group (CECAG) and the Association of Bioethics Program Directors (ABPD). Ninety-five ethics consultants and/or educators with diverse educational background, credentials, and experience provided responses. In total, 451 references, 315 of which were unique, were reported. These references were broken into 6 categories after analysis: bioethics literature (divided into articles and books), professional society documents (divided into professional society statements and codes of ethics), federal/state/uniform/case law, hospital/health system policies, official religious teachings, and other. We found extensive variation and minimal overlap in the references respondents used for ethics consultation and education, even when referring to the same topics. Future research directions should include conducting more systematic efforts to characterize the references used by ethics consultants across the US; determining whether demographic characteristics of consultants influence the references used; and ascertaining whether the variation in references used reflects genuine disagreements in consultants' and educators' bioethical analysis or recommendations.

Ethical and practical considerations of pediatric refusal in clinical anesthesia: An educational review.

Children commonly refuse induction of anesthesia. Anesthesia providers must then decide whether to honor the child's dissent or to proceed over objection. In some circumstances, a forced induction involves restraining the child, incurring both practical and ethical harms to the patient-provider encounter. This educational review explores the practical dilemma encountered when a child dissents to induction of anesthesia. In the course of exploring this dilemma, dissent and associated terms are defined and compared, and the prominent ethical underpinnings regarding pediatric decision-making are described to clarify dissent as an ethical and practical concept. Important legal and professional standards are summarized, and practice trends are discussed to depict the current state of practice, including novel approaches to honoring pediatric dissent for elective surgeries. This information is then used to invite providers to consider where they ethically situate themselves within a legally and professionally defined space of acceptable practice. Finally, these considerations are synthesized to discuss important nuances regarding pediatric refusal, and some key questions are presented for clinicians to ponder as they consider their practice of choosing whether to honor pediatric dissent at induction.