This paper traces the development of parental rights to accept or to refuse treatment for a defective newborn infant in the United Kingdom and in the United States of America; its main purpose is to explore the common trends from which an acceptable policy may be derived. It is probable that the British law on parental decision-making in respect of infants suffering from Down's syndrome is to be found in the civil case of In Re B rather than in the (...) criminal case of R v Arthur. United States court decisions are strongly influenced by constitutional law and reflect the right to personal privacy. The position on each side of the Atlantic seems very similar but this similarity includes a sense of uncertainty as to legal responsibility. There is a case for agreed guidelines and a suggested format is offered for consideration. (shrink)

Background: Clinical ethics consultation services have been established in many countries during recent decades. An important task is to discuss concrete clinical cases. However, empirical research observing what is happening during such deliberations is scarce. Objectives: To explore clinical ethics committees’ deliberations and to identify areas for improvement. Design: A pilot study including observations of committees deliberating a paper case, semistructured group interviews, and qualitative analysis of the data. Participants: Nine hospital ethics committees in Norway. Results and interpretations: Key elements (...) of the deliberations included identifying the ethical problems; exploring moral values and principles; clarifying key concepts and relevant legal regulation; exploring medical facts, the patient’s situation, the therapists’ perspective, analogous clinical situations, professional uncertainties, the patient’s and relatives’ perspective, and clinical communication; identifying the involved parties and how to involve them; identifying possible courses of action, and possible conclusion and follow-up. The various elements were closely interwoven. The content and conclusions varied and seemed to be contingent on the committee members’ interpretations, experience and knowledge. Important aspects of a clinical ethics deliberation were sometimes neglected. When the committees used a deliberation procedure and a blackboard, the deliberations tended to become more systematic and transparent. Many of the committees were insecure about how to include the involved parties and how to document the deliberations. Conclusion: Clinical ethics committees may provide an important arena for multidisciplinary discussions of complex clinical ethics challenges. However, this seems to require adequate composition, adoption of transparent deliberation procedures, and targeted training. (shrink)

Tthis book is likely to receive its warmest reception form advanced students of the philosophy of law, who will welcome the relief provided from the frequently sterile tone of much recent work in the field.

With this issue George Annas contributes his last At Law to the Hastings Center Report. Since the column was inaugurated in 1976 as Law and the Life Sciences, George has charted the course of biomedical ethics in the courts, challenging readers to come to grips with an emerging body of law in provocative analyses of critical decisions. As he retires from this column we wish him well, and look forward to his continued contributions to our pages. In bidding farewell to (...) one friend we are nonetheless pleased to welcome another as Alexander Morgan Capron, Henry W. Bruce University Professor of Law and Medicine at the University of Southern California and codirector of the Pacific Center for Health Policy and Ethics, joins the Report in the September‐October issue as a regular contributor to this column. Prof. Capron, formerly executive director of The President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, is a distinguished scholar and writer well known to our readers. We welcome the opportunity to share his insights on issues before courts and legislatures nationwide. (shrink)

Book reviewed in this article: Principles of Biomedical Ethics. By Tom L. Beauchamp and James F. Childress.

In a recent issue of the Journal of Medicine and Philosophy, several scholars wrote on the topic of ethics expertise in clinical ethics consultation. The articles in this issue exemplified what we consider to be two troubling trends in the quest to articulate a unique expertise for clinical ethicists. The first trend, exemplified in the work of Lisa Rasmussen, is an attempt to define a role for clinical ethicists that denies they have ethics expertise. Rasmussen cites the dependence of ethical (...) expertise on irresolvable meta-ethical debates as the reason for this move. We argue against this deflationary strategy because it ends up smuggling in meta-ethical assumptions it claims to avoid. Specifically, we critique Rasmussen’s distinction between the ethical and normative features of clinical ethics cases. The second trend, exemplified in the work of Dien Ho, also attempts to avoid meta-ethics. However, unlike Rasmussen, Ho tries to articulate a notion of ethics expertise that does not rely upon meta-ethics. Specifically, we critique Ho’s attempts to explain how clinical ethicists can resolve moral disputes using what he calls the “Default Principle” and “arguments by parity.” We show that these strategies do not work unless those with the moral disagreement already share certain meta-ethical assumptions. Ultimately, we argue that the two trends of attempting to avoid meta-ethics by denying that clinical ethicists have ethics expertise, and attempting to articulate how ethics expertise can be used to resolve disputes without meta-ethics both fail because they do not, in fact, avoid doing meta-ethics. We conclude that these trends detract from what clinical ethics consultation was founded to do and ought to still be doing—provide moral guidance, which requires ethics expertise, and engagement with meta-ethics. To speak of ethicists without ethics expertise leaves their role in the clinic dangerously unclear and unjustified. (shrink)

The idea of a patient's best interests raises issues in prudential value theory–the study of what makes up an individual's ultimate (nonmoral) good or well‐being. While this connection may strike a philosopher as obvious, the literature on the best interests standard reveals almost no engagement of recent work in value theory. There seems to be a growing sentiment among bioethicists that their work is independent of philosophical theorizing. Is this sentiment wrong in the present case? Does value theory make a (...) significant difference in interpreting best interests? In pursuing this question, I begin with a quick sketch of broad kinds of value theories, identifying representatives that are plausible enough to count as contenders. I then explore what each account suggests in (1) neonatal treatment decisions, and (2) decisions for patients in persistent vegetative states. I conclude that while these accounts converge somewhat in their interpretations of best interests, they also have importantly different implications. (shrink)

One recurring criticism of the best interests standard concerns its vagueness, and thus the inadequate guidance it offers to care providers. The lack of an agreed definition of ‘best interests’, together with the fact that several suggested considerations adopted in legislation or professional guidelines for doctors do not obviously apply across different groups of persons, result in decisions being made in murky waters. In response, bioethicists have attempted to specify the best interests standard, to reduce the indeterminacy surrounding medical decisions. (...) In this paper, we discuss the bioethicists’ response in relation to the state's possible role in clarifying the best interests standard. We identify and characterise two clarificatory strategies employed by bioethicists —elaborative and enumerative—and argue that the state should adopt the latter. Beyond the practical difficulties of the former strategy, a state adoption of it would inevitably be prejudicial in a pluralistic society. Given the gravity of best interests decisions, and the delicate task of respecting citizens with different understandings of best interests, only the enumerative strategy is viable. We argue that this does not commit the state to silence in providing guidance to and supporting healthcare providers, nor does it facilitate the abuse of the vulnerable. Finally, we address two methodological worries about adopting this approach at the state level. The adoption of the enumerative strategy is not defeatist in attitude, nor does it eventually collapse into (a form of) the elaborative strategy. (shrink)

In the western healthcare, shared decision making has become the orthodox approach to making healthcare choices as a way of promoting patient autonomy. Despite the fact that the autonomy paradigm is poorly suited to paediatric decision making, such an approach is enshrined in English common law. When reaching moral decisions, for instance when it is unclear whether treatment or non-treatment will serve a child’s best interests, shared decision making is particularly questionable because agreement does not ensure moral validity. With reference (...) to current common law and focusing on intensive care practice, this paper investigates what claims shared decision making may have to legitimacy in a paediatric intensive care setting. Drawing on key texts, I suggest these identify advantages to parents and clinicians but not to the child who is the subject of the decision. Without evidence that shared decision making increases the quality of the decision that is being made, it appears that a focus on the shared nature of a decision does not cohere with the principle that the best interests of the child should remain paramount. In the face of significant pressures toward the displacement of the child’s interests in a shared decision, advantages of a shared decision to decisional quality require elucidation. Although a number of arguments of this nature may have potential, should no such advantages be demonstrable we have cause to revise our commitment to either shared decision making or the paramountcy of the child in these circumstances. (shrink)

Clinical ethics committees (CECs) in the United Kingdom (UK) have developed significantly over the past 15 years. The issue of access to and participation in clinical ethics consultation by patients and family members has, however, gone largely unrecognized. There are various dimensions to this kind of contact, including patient notification, consent and participation. This study reports the first specific investigation of patient contact with UK CECs. A questionnaire study was carried out with representatives from UK CECs. Results suggest that patient (...) participation in clinical ethics consultation is low and unlikely to change significantly in the near future. Attitudes towards patients having a role in clinical ethics consultation are mixed, with a variety of reasons put forward both for and against patient participation. These results are discussed in the light of common themes in the literature and the practical and political context of clinical ethics support in the UK. (shrink)

The development of clinical ethic support in the UK arguably brings with it a series of legal questions, which need to be addressed. Most particularly, these concern questions of due process and formal justice, which I argue are central to the provision of appropriate ethical advice. In this article, I will compare the UK position with the more developed system in the USA, which often provides a template for development in the UK. While it is not argued that the provision (...) of clinical ethics support in the UK will necessarily follow the path mapped in the USA, there are lessons that can be learned from the US experience – particularly in terms of attention to process – from which UK clinical ethics support service might well benefit. (shrink)

Most clinical ethics committees (CECs) have lay members. Why are they there, how are they chosen, and what do they do? Can their presence make health professionals less prone to jargon and hospital politicking, and can the lay members ever hope to represent the broad sweep of patients when many of them are white, middle class females? As hospital managers embrace CECs and even boast about them, will their informality be lost, with consequent exposure of professional and lay members to (...) public scrutiny and criticism? Will brave, open discussion be stifled, and the purpose of the committees ultimately be lost? (shrink)

Clinical ethics consultants represent a multidisciplinary group of scholars and practitioners with varied training backgrounds, who are integrated into a medical environment to assist in the provision of ethically supportable care. Little has been written about the degree to which such consultants are accountable for the patient care outcome of the advice given. We propose a model for examining degrees of internally motivated accountability that range from restricted to unbounded accountability, and support balanced accountability as a goal for practice. Finally, (...) we explore implications of this model for training of clinical ethics consultants from diverse academic backgrounds, including those disciplines that do not have a formal code of ethics relating to clinical practice. (shrink)

Evaluation of clinical ethics support services (CESS) has attracted considerable interest in recent decades. However, few evaluation studies are explicit about normative presuppositions which underlie the goals and the research design of CESS evaluation. In this paper, we provide an account of normative premises of different approaches to CESS evaluation and argue that normativity should be a focus of considerations when designing and conducting evaluation research of CESS. In a first step, we present three different approaches to CESS evaluation from (...) published literature. Next to a brief sketch of the well-established approaches of ‘descriptive evaluation’ and ‘evaluation of outcomes’, we will give a more detailed description of a third approach to evaluation—‘reconstructing quality norms of CESS’—which is explicit about the normative presuppositions of its research (design). In the subsequent section, we will analyse the normative premises of each of the three approaches to CESS evaluation. We will conclude with a brief argument for more sensitivity towards the normativity of CESS and its evaluation research. (shrink)

Bioethicists have recently expressed concern over a lack of quality control within the field. This apprehension focuses on bioethics expanding in ways that obscure its distinctive ethical remit and the specialist reasoning skills it requires. This thesis about the quality and conduct of bioethics may have particular relevance for clinical ethics. As one of the youngest offshoots of bioethics, the field focuses on the ethical issues that arise specifically in a clinical context. However, non-ethics specialists are increasingly involved in this (...) field. This means that clinical ethics could be especially vulnerable to the quality control concerns articulated within bioethics. The growing public profile of clinical ethics means that concerns over quality in this area warrant specific attention by those concerned with declining standards in bioethics and those working in clinical ethics. (shrink)

As support for clinical ethics committees in the UK grows, care must be taken to define their function, membership and method of working and the status of their decisions.The modern practice of medicine raises a plethora of complex issues—medical, ethical and legal. Doctors and other healthcare professionals increasingly must try to resolve these and may sometimes have to do so in the face of contrary opinion expressed by patients and/or their surrogates. While clearly qualified in the medical arena, and although (...) there is now more ethics teaching in the medical curriculum, healthcare professionals are seldom qualified to adjudicate on ethical or legal matters, or even, perhaps, to recognise them when they arise. Yet, as Doyal says, “clinical life must go on and moral and legal indeterminacy within medicine cries out for practical resolution.”1 Meanwhile, the expectations of patients and their families—and, indeed, of wider society—are that decisions about patient care, resources and therapeutic regimes should be soundly based on appropriate ethicolegal, as well as scientific, principle.Recognition of these additional burdens on healthcare professionals has generated some interest in the provision of ethics consultation. In the USA this has been undertaken by a variety of tribunals and individuals. Hospital ethics committees and ethics consultants feature in many US hospitals and perform a variety of roles. In Europe, a number of countries have also established clinical ethics committees and they are becoming more common in the UK—primarily in England and Wales for the moment. Whereas, however, “[i]n North America, CECs have … become an integral part of the organisational infrastructure of hospitals ...”,1 in the United Kingdom they remain essentially ad hoc bodies, generated for a variety of reasons and with different goals, structures, membership, methods of working and functions. The initial impetus for the …. (shrink)

This work focuses upon decisions to withhold or withdraw life-supporting treatment from incompetent patients. It offers a critical examination of the latest developments with a view to developing a new framework for resolving disputes in the clinic that is not only theoretically robust but also practically relevant.

Background In 2001 a report on the provision of clinical ethics support in UK healthcare institutions identified 20 clinical ethics committees. Since then there has been no systematic evaluation or documentation of their work at a national level. Recent national surveys of clinical ethics services in other countries have identified wide variation in practice and scope of activities. Objective To describe the current provision of ethics support in the UK and its development since 2001. Method A postal/electronic questionnaire survey administered (...) to the chairs of all 82 clinical ethics services registered with the UK Clinical Ethics Network in July 2010. Results Response rate was 62% with the majority of responding services situated in acute trusts. All services included a clinical ethics committee with one service also having a clinical ethicist. Lay members were present in 72% of responding committees. Individual case consultation has increased since 2001 with 29% of chairs spending more than 50% of their time on this. Access to and involvement in the process of case consultation is less for patients and families than for clinical staff. There is wide variation in committee processes and levels of institutional support. Over half of the responding committees undertook some form of evaluation. Conclusion Clinical ethics services in the UK are increasing as is their involvement in case consultation. However, the significant variation in committee processes suggests that further qualitative research is needed to understand how these committees function and the role they play in their institution. (shrink)

In this paper I examine the question of whether ethicists are moral experts. I call people moral experts if their moral judgments are correct with high probability and for the right reasons. I defend three theses, while developing a version of the coherence theory of moral justification based on the differences between moral and nonmoral experience: The answer to the question of whether there are moral experts depends on the answer to the question of how to justify moral judgments. Deductivism (...) and the coherence theory both provide some support for the opinion that moral experts exist in some way. I maintain – within the framework of a certain kind of coherence theory – that moral philosophers are 'semi-experts'. (shrink)

In an increasingly litigious society where ritual demands for accountability and “taking responsibility” are now commonplace, it is not surprising that members of clinical ethics committees (CECs) are becoming more aware of their potential legal liability. Yet the vulnerability of committee members to legal action is difficult to assess with any certainty. This is because the CECs which have been set up in the UK are—if the American experience is followed—likely to vary significantly in terms of their functions, procedures, composition, (...) structures and authority. As a consequence it is difficult to generalise about the legal implications. Nevertheless, despite these difficulties this article will outline the broad legal principles governing the potential liability of committee members. It will also consider the relationship between CECs and the courts. It begins, however, with a brief analysis of the relationship between ethics and law in committee deliberations, and in particular of the role of law and legal expertise on CECs. (shrink)

The UK Genethics Club was established in November 2001 in order to provide a national forum of ethics support for the profession of clinical genetics in the UK. The forum brings together health professionals, medical ethicists and lawyers and support is provided through detailed discussion of cases and sharing of good practice. Clinical genetics professionals had previously voiced concerns about making extremely difficult ethical decisions, with profound implications, in something of a vacuum. Professionals saw a lack of guidance in the (...) area and lack of time for discussion of difficult cases as reasons for this. This paper describes the origins of the group and gives (anonymized) examples of some of the types of issues discussed. (shrink)

The paper describes how ethics consultation can be valuable to health professionals, patients and their families in understanding and evaluating ethical values and their consequences in a particular situation. Ethics consultation as it is practised at the university hospital of Freiburg is a special professional service offered by members of an academic institution.The practical approach and the goals are illustrated by a case study showing the difficulties of deciding about the limitation of intensive care medicine after heart surgery in the (...) setting of maximum treatment. Here, the ethics consultation was initiated by the relatives of the patient who wanted a decision to withhold further life-sustaining treatment.Following the experiences in Freiburg, it is concluded that clinical ethicists have to cover a variety of relevant fields of knowledge, need special analytical skills, and should have professional competence in counselling, including conflict mediation or crisis intervention. (shrink)

Doctors and nurses at the neonatal intensive-care unit at The University Hospital, Rigshospitalet, in Copenhagen, Denmark regularly find themselves in ethically challenging and potentially distressing situations concerning the life of ill newborn babies. In collaboration with the neonatal intensive-care unit, my project was to develop a method that could stimulate systematically dialogical moral inquiry within everyday clinical practice. My four months of ethnographic fieldwork at the neonatal intensive-care unit generated four fundamental themes that make up the scaffold of the developed (...) model for ethical deliberation and decision making. The model is a reflective tool to be used by health care professionals in situ. It provides a structured and a systematic framework for dialogue that can clarify the obscurities of a case and give argumentative support for ethical decisions. This article explains how the 4C model was developed and whereof it consists. (shrink)