The Role of a Hospital Ethics Consultation Service in Decision-Making for Unrepresented Patients

Despite increased calls for hospital ethics committees to serve as default decision-makers about life-sustaining treatment (LST) for unrepresented patients who lack decision-making capacity or a surrogate decision-maker and whose wishes regarding medical care are not known, little is known about how committees currently function in these cases. This was a retrospective cohort study of all ethics committee consultations involving decision-making about LST for unrepresented patients at a large academic hospital from 2007 to 2013. There were 310 ethics committee consultations, twenty-five (8.1 per cent) of which involved unrepresented patients. In thirteen (52.0 per cent) cases, the ethics consultants evaluated a possible substitute decision-maker identified by social workers and/or case managers. In the remaining cases, the ethics consultants worked with the medical team to contact previous healthcare professionals to provide substituted judgement, found prior advance care planning documents, or identified the patient’s best interest as the decision-making standard. In the majority of cases, the final decision was to limit or withdraw LST (72 per cent) or to change code status to Do Not Resuscitate/Do Not Intubate (12 per cent). Substitute decision-makers who had been evaluated through the ethics consultation process and who made the final decision alone were more likely to continue LST than cases in which physicians made the final decision (50 per cent vs 6.3 per cent, p = 0.04). In our centre, the primary role of ethics consultants in decision-making for unrepresented patients is to identify appropriate decision-making standards. In the absence of other data suggesting that ethics committees, as currently constituted, are ready to serve as substitute decision-makers for unrepresented patients, caution is necessary before designating these committees as default decision-makers.     

When a physician and a clinical ethicist collaborate for better patient care

Bioethics is a relatively new addition to bedside medical care in Arab world which is characterized by a special culture that often makes blind adaptation of western ethics codes and principles; a challenge that has to be faced. To date, the American University of Beirut Medical Center is the only hospital that offers bedside ethics consultations in the Arab Region aiming towards better patient‐centered care. This article tackles the role of the bedside clinical ethics consultant as an active member of the medical team and the impact of such consultations on decision‐making and patient‐centered care. Using the case of a child with multiple medical problems and a futile medical condition, we describe how the collaboration of the medical team and the clinical ethics consultant took a comprehensive approach to accompany and lead the parents and the medical team in their decision‐making process and how the consultations allowed several salient issues to be addressed. This approach proved to be effective in the Arab cultural setting and indeed did lead to better patientcentered care.     

Enriching Our Views on Clinical Ethics: Results of a Qualitative Study of the Moral Psychology of Healthcare Ethics Committee Members

The contribution of healthcare ethics committee (HEC) members to HECs is fundamental. However, little is known about how HEC members view clinical ethics. We report results from a qualitative study of the moral psychology of HEC members. We found that contrary to the existing Kohlberg-based studies, HEC members hold a pragmatic non-expert view of clinical ethics based mainly on respect for persons and a commitment to the patient’s good. In general, HEC members hold deflationary views regarding moral theory. Ethical principles are not abstract foundations but the expression of moral commitments to patients that pre-exist awareness of moral theory. Emotions and proximity to patient sufferance fundamentally shape the views of HEC members on clinical ethics. Further work at the intersection of clinical ethics and qualitative research could bring to the foreground lay perspectives on moral problems that may differ from bioethics expert views.     

Who should Decide for the Unrepresented?

Unrepresented patients lack the capacity to make medical decisions for themselves, have no clear documentation of preferences for medical treatment, and have no surrogate decision maker or obvious candidate for that role. There is no consensus about who should serve as the decision maker for these patients, particularly regarding whether to continue or to limit life‐sustaining treatment. Several authors have argued that ethics committees should play this role rather than the patient's treating physician, a common current default. We argue that concerns about the adequacy of physicians as surrogates are either empirically unfounded or apply equally to ethics committees. We suggest that physicians should be the primary decision maker for the unrepresented because of their fiduciary duties toward their patients. As part of the process of fulfilling these duties, they should seek the advice of third parties such as ethic committees; but final end‐of‐life decision‐making for the unrepresented should rest with the treating physician.     

Ethical Considerations in Clinical Trials: A Critique of the ICH‐GCP Guideline

This article examines issues relating to ethics decision‐making in clinical trials. The overriding concern is to ensure that the well being and the interests of human subjects are adequately safeguarded. In this respect, this article will embark on a critical analysis of the ICH‐GCP Guideline. The purpose of such an undertaking is to highlight areas of concern and the shortcomings of the existing ICH‐GCP Guideline. Particular emphasis is made on how ethics committees perform their duties and responsibilities in line with the principles outlined in the ICH‐GCP Guideline. This article will draw attention to the need for a new approach to addressing the weaknesses of the ICH‐GCP Guideline in its present form.     

Professional Hubris and its Consequences: Why Organizations of Health‐Care Professions Should Not Adopt Ethically Controversial Positions

In this article, I argue that professional healthcare organizations such as the AMA and ANA ought not to take controversial stances on professional ethics. I address the best putative arguments in favor of taking such stances, and argue that none are convincing. I then argue that the sort of stance‐taking at issue has pernicious consequences: it stands to curb critical thought in social, political, and legal debates, increase moral distress among clinicians, and alienate clinicians from their professional societies. Thus, because there are no good arguments in favor of stance‐taking and at least some risks in doing so, professional organizations should refrain from adopting the sort of ethically controversial positions at issue.     

Adjusting the focus: A public health ethics approach to data research

This paper contends that a research ethics approach to the regulation of health data research is unhelpful in the era of population‐level research and big data because it results in a primary focus on consent (meta‐, broad, dynamic and/or specific consent). Two recent guidelines – the 2016 WMA Declaration of Taipei on ethical considerations regarding health databases and biobanks and the revised CIOMS International ethical guidelines for health‐related research involving humans – both focus on the growing reliance on health data for research. But as research ethics documents, they remain (to varying degrees) focused on consent and individual control of data use. Many current and future uses of health data make individual consent impractical, if not impossible. Many of the risks of secondary data use apply to communities and stakeholders rather than individual data subjects. Shifting from a research ethics perspective to a public health lens brings a different set of issues into view: how are the benefits and burdens of data use distributed, how can data research empower communities, who has legitimate decision‐making capacity? I propose that a public health ethics framework – based on public benefit, proportionality, equity, trust and accountability – provides more appropriate tools for assessing the ethical uses of health data. The main advantage of a public health approach for data research is that it is more likely to foster debate about power, justice and equity and to highlight the complexity of deciding when data use is in the public interest.     

Investigating assumptions of vulnerability: A case study of the exclusion of psychiatric inpatients as participants in genetic research in low‐ and middle‐income contexts

Psychiatric genetic research investigates the genetic basis of psychiatric disorders with the aim of more effectively understanding, treating, or, ultimately, preventing such disorders. Given the challenges of recruiting research participants into such studies, the potential for long‐term benefits of such research, and seemingly minimal risk, a strong claim could be made that all non‐acute psychiatric inpatients, including forensic and involuntary patients, should be included in such research, provided they have capacity to consent. There are tensions, however, regarding the ethics of recruiting psychiatric inpatients into such studies. In this paper our intention is to elucidate the source of these tensions from the perspective of research ethics committee interests and decision‐making. We begin by defining inpatient status and outline some of the assumptions surrounding the structures of inpatient care. We then introduce contemporary conceptions of vulnerability, including Florencia Luna’s account of vulnerability which we use as a framework for our analysis. While psychiatric inpatients could be subject to consent‐related vulnerabilities, we suggest that a particular kind of exploitation‐related vulnerability comes to the fore in the context of our case study. Moreover, a subset of these ethical concerns takes on particular weight in the context of genetic research in low‐ and middle‐income countries. At the same time, the automatic exclusion of inpatients from research elicits justice‐related vulnerabilities.     

Ethics and cultural diversity--a framework for decision-making

Believing that healthcare outcomes will be more satisfying if the patients' cultural knowledge and values are understood and integrated appropriately in care planning, the author proposes a culturally competent ethical decision making model based on human rights--the fundamental right of individuals, families, groups, and populations to healthcare that is meaningful, supportive, and beneficial--and a reconceptualization of ethical principles to include the values and assumptions of clients. The ideal result is culturally congruent healthcare in which practitioners learn about their clients' lifeways and work with them to find satisfying ways to resolve clinical and ethical issues.     

The balancing of virtues—Muslim perspectives on palliative and end of life care: Empirical research analysing the perspectives of service users and providers

In this paper, I will share findings from a qualitative study that offers a thematic analysis of 76 interviews with Muslim patients and families as well as doctors, nurses, allied health professionals, chaplains and community faith leaders across the United Kingdom. The data show that for many Muslims, Islam—its texts and lived practice—is of central importance when they are deliberating about death and dying . Central to these deliberations are virtues rooted within Islamic theology and ethics, the traditions of adab (virtue) and aqhlaq (proper conduct). Themes analysed include theological and moral understandings around the virtues of hope and acceptance. The study provides an analysis of these themes in relation to the experiences of Muslim patients and families arriving at meaning making around death and dying and how this interfaces with their interaction with biomedicine and healthcare. The study shows that the juxtaposition of different values and moral frameworks require careful negotiation when Muslim patients and families encounter the healthcare system. The study also describes how healthcare professionals and staff of other faiths and no faith encounter Muslim beliefs and practices, and the challenges they face in interpreting virtues and values rooted in faith, especially when these are perceived to be mutually opposed or inconsistent.     

Opportunities in Reform: Bioethics and Mental Health Ethics

Last year marks the first year of implementation for both the Patient Protection and Affordable Care Act and the Mental Health Parity and Addiction Equity Act in the United States. As a result, healthcare reform is moving in the direction of integrating care for physical and mental illness, nudging clinicians to consider medical and psychiatric comorbidity as the expectation rather than the exception. Understanding the intersections of physical and mental illness with autonomy and self‐determination in a system realigning its values so fundamentally therefore becomes a top priority for clinicians. Yet Bioethics has missed opportunities to help guide clinicians through one of medicine's most ethically rich and challenging fields. Bioethics' distancing from mental illness is perhaps best explained by two overarching themes: 1) An intrinsic opposition between approaches to personhood rooted in Bioethics' early efforts to protect the competent individual from abuses in the research setting; and 2) Structural forces, such as deinstitutionalization, the Patient Rights Movement, and managed care. These two themes help explain Bioethics' relationship to mental health ethics and may also guide opportunities for rapprochement. The potential role for Bioethics may have the greatest implications for international human rights if bioethicists can re‐energize an understanding of autonomy as not only free from abusive intrusions but also with rights to treatment and other fundamental necessities for restoring freedom of choice and self‐determination. Bioethics thus has a great opportunity amid healthcare reform to strengthen the important role of the virtuous and humanistic care provider.     

Ethics and Rationing Access to Dialysis in Resource‐Limited Settings: The Consequences of Refusing a Renal Transplant in the South African State Sector

Resource constraints in developing countries compel policy makers to ration the provision of healthcare services. This article examines one such set of Guidelines: A patient dialysing in the state sector in South Africa may not refuse renal transplantation when a kidney becomes available. Refusal of transplantation can lead to exclusion from the state‐funded dialysis programme. This Guideline is legally acceptable as related to Constitutional stipulations which allow for rationing healthcare resources in South Africa. Evaluating the ethical merit of the Guideline, and exploring the ethical dilemma it poses, proves a more complex task. We examine the actions of healthcare professionals as constrained by the Guideline. From a best interests framework, we argue that in these circumstances directing patient decision making (pressurising a patient to undergo renal transplantation) is not necessarily unethical or unacceptably paternalistic. We then scrutinise the guideline itself through several different ethical ‘lenses’. Here, we argue that bioethics does not provide a definitive answer as to the moral merit of rationing dialysis under these circumstances, however it can be considered just in this context. We conclude by examining a potential pitfall of the Guideline: Unwilling transplant recipients may not comply with immunosuppressive medication, which raises questions for policies based on resource management and rationing.     

The Nature and Value of Bioethics Expertise

In this article, I address the extent to which experts in bioethics can contribute to healthcare delivery by way of aid in clinical decision‐making and policy‐formation. I argue that experts in bioethics are moral experts, in that their substantive moral views are more likely to be correct than those of non‐bioethicists, all else being equal, but that such expertise is of use in a relatively limited class of cases. In so doing, I respond to two recent arguments against the view that bioethicists are moral experts, one by Christopher Cowley and another by David Archard. I further argue that bioethics experts have significant additional contributions to make to healthcare delivery, and highlight a hitherto neglected aspect of that contribution: amelioration of moral misconception among clinicians. I describe in detail several aspects of moral misconception, and show how the bioethicist is in a prime position to resolve that sort of error.     

End‐of‐life decision‐making and advance care directives in Italy. A report and moral appraisal of recent legal provisions

The present article reviews the state of public debate and legal provisions concerning end‐of‐life decision‐making in Italy and offers an evaluation of the moral and legal issues involved. The article further examines the content of a recent law concerning informed consent and advance treatment directives, the main court pronouncements that formed the basis for the law, and developments in the public debate and important jurisprudential acts subsequent to its approval. The moral and legal grounds for a positive evaluation of this law, which attests that the patient may withhold or withdraw from life‐prolonging treatment, will be offered with reference to liberal approaches and particularly to the frameworks of care and virtue ethics; but reasons will also be offered in order to consider not only the latter but also broader range of end‐of‐life treatment decisions as morally apt options. In this light, we argue in favour of a further development of the Italian legislation to encompass forms of assisted suicide and active euthanasia.     

NAVIGATING THE MURKY INTERSECTION BETWEEN CLINICAL AND ORGANIZATIONAL ETHICS: A HYBRID CASE TAXONOMY

Ethical challenges that arise within healthcare delivery institutions are currently categorized as either clinical or organizational, based on the type of issue. Despite this common binary issue‐based methodology, empirical study and increasing academic dialogue indicate that a clear line cannot easily be drawn between organizational and clinical ethics. Disagreement around end‐of‐life treatments, for example, often spawn value differences amongst parties at both organizational and clinical levels and requires a resolution to address both the case at hand and large‐scale underlying system‐level confounders. I refer to issues that contain elements of both clinical and organizational issues as hybrids and propose a new taxonomy to characterize hybrid cases. I contend that salient contextual features of an ethical issue, such as where it is identified, who it impacts and where it is ideally resolved in relation to its scope of impact, should inform procedure. Implementation of a Hybrid taxonomy viewing ethical issues as existing on a continuum furthers that end. The primary goals are to 1) systematize thinking about ethical issues that arise within healthcare delivery institutions and 2) allow the content of the ethical challenge to drive the process, rather than continuing to rely on the traditional binary issue‐based choice. Failure to capture the complexity of hybrid situations perpetuates incomplete information and ultimately an inchoate resolution that creates more questions than answers.     

Weaponizing Principles: Clinical Ethics Consultations & the Plight of the Morally Vulnerable

Internationally, there is an on‐going dialogue about how to professionalize ethics consultation services (ECSs). Despite these efforts, one aspect of ECS‐competence that has received scant attention is the liability of failing to adequately capture all of the relevant moral considerations in an ethics conflict. This failure carries a high price for the least powerful stakeholders in the dispute. When an ECS does not possess a sophisticated dexterity at translating what stakeholders say in a conflict into ethical concepts or principles, it runs the risk of naming one side's claims as morally legitimate and decrying the other's as merely self‐serving. The result of this failure is that one side in a dispute is granted significantly more moral weight and authority than the other. The remedy to this problem is that ECSs learn how to expand the diagnostic moral lens they employ in clinical ethics conflicts.     

Bisphenol A and Risk Management Ethics

It is widely recognized that endocrine disrupting compounds, such as Bisphenol A, pose challenges for traditional paradigms in toxicology, insofar as these substances appear to have a wider range of low‐dose effects than previously recognized. These compounds also pose challenges for ethics and policymaking. When a chemical does not have significant low‐dose effects, regulators can allow it to be introduced into commerce or the environment, provided that procedures and rules are in place to keep exposures below an acceptable level. This option allows society to maximize the benefits from the use of the chemical while minimizing risks to human health or the environment, and it represents a compromise between competing values. When it is not possible to establish acceptable exposure levels for chemicals that pose significant health or environmental risks, the most reasonable options for risk management may be to enact either partial or complete bans on their use. These options create greater moral conflict than other risk management strategies, leaving policymakers difficult choices between competing values.     

Justice and Surgical Innovation: The Case of Robotic Prostatectomy

Surgical innovation promises improvements in healthcare, but it also raises ethical issues including risks of harm to patients, conflicts of interest and increased injustice in access to health care. In this article, we focus on risks of injustice, and use a case study of robotic prostatectomy to identify features of surgical innovation that risk introducing or exacerbating injustices. Interpreting justice as encompassing matters of both efficiency and equity, we first examine questions relating to government decisions about whether to publicly fund access to innovative treatments. Here the case of robotic prostatectomy exemplifies the difficulty of accommodating healthcare priorities such as improving the health of marginalized groups. It also illustrates challenges with estimating the likely long‐term costs and benefits of a new intervention, the difficulty of comparing outcomes of an innovative treatment to those of established treatments, and the further complexity associated with patient and surgeon preferences. Once the decision has been made to fund a new procedure, separate issues of justice arise at the level of providing care to individual patients. Here, the case of robotic prostatectomy exemplifies how features of surgical innovation, such as surgeon learning curves and the need for an adequate volume of cases at a treatment centre, can exacerbate injustices associated with treatment cost and the logistics of travelling for treatment. Drawing on our analysis, we conclude by making a number of recommendations for the just introduction of surgical innovations.     

IS GLOBAL ETHICS MORAL NEO‐COLONIALISM? AN INVESTIGATION OF THE ISSUE IN THE CONTEXT OF BIOETHICS

This paper considers the possibility and desirability of global ethics in light of the claim that ‘global ethics’ in any form is not global, but simply the imposition of one form of local ethics – Western ethics – and, as such, a form of moral neo‐colonialism. The claim that any form of global ethics is moral neo‐colonialism is outlined using the work of a group of ‘developing world bioethicists’ who are sceptical of the possibility of global ethics. The work of virtue ethicists is then introduced and compared to the position of the developing world bioethicists in order to show that the divide between ‘Western’ and ‘non‐Western’ ethics is exaggerated. The final section of the paper turns to the practical arena and considers the question of global ethics in light of practical issues in bioethics. The paper concludes that practical necessity is driving the creation of global ethics and thus the pertinent question is no longer ‘Whether global ethics?’, but ‘Why global ethics?’.