Though the revised edition of A Theory of Justice, published in 1999, is the definitive statement of Rawls's view, so much of the extensive literature on Rawls's theory refers to the first edition. This reissue makes the first edition once again available for scholars and serious students of Rawls's work.

In patient-centred care, shared decision-making is advocated as the preferred form of medical decision-making. Shared decision-making is supported with reference to patient autonomy without abandoning the patient or giving up the possibility of influencing how the patient is benefited. It is, however, not transparent how shared decision-making is related to autonomy and, in effect, what support autonomy can give shared decision-making. In the article, different forms of shared decision-making are analysed in relation to five different aspects of autonomy: (1) self-realisation; (...) (2) preference satisfaction; (3) self-direction; (4) binary autonomy of the person; (5) gradual autonomy of the person. It is argued that both individually and jointly these aspects will support the models called shared rational deliberative patient choice and joint decision as the preferred versions from an autonomy perspective. Acknowledging that both of these models may fail, the professionally driven best interest compromise model is held out as a satisfactory second-best choice. (shrink)

Human beings have the unique ability to view the world in a detached way: We can think about the world in terms that transcend our own experience or interest, and consider the world from a vantage point that is, in Nagel's words, "nowhere in particular". At the same time, each of us is a particular person in a particular place, each with his own "personal" view of the world, a view that we can recognize as just one aspect of the (...) whole. How do we reconcile these two standpoints--intellectually, morally, and practically? To what extent are they irreconcilable and to what extent can they be integrated? Thomas Nagel's ambitious and lively book tackles this fundamental issue, arguing that our divided nature is the root of a whole range of philosophical problems, touching, as it does, every aspect of human life. He deals with its manifestations in such fields of philosophy as: the mind-body problem, personal identity, knowledge and skepticism, thought and reality, free will, ethics, the relation between moral and other values, the meaning of life, and death. Excessive objectification has been a malady of recent analytic philosophy, claims Nagel, it has led to implausible forms of reductionism in the philosophy of mind and elsewhere. The solution is not to inhibit the objectifying impulse, but to insist that it learn to live alongside the internal perspectives that cannot be either discarded or objectified. Reconciliation between the two standpoints, in the end, is not always possible. (shrink)

In discussions about the legalisation of active, voluntary euthanasia it is sometimes claimed that what should happen in a liberal society is that the two sides in the debate “agree to disagree”. This paper explores what is entailed by agreeing to disagree and shows that this is considerably more complicated than what is usually believed to be the case. Agreeing to disagree is philosophically problematic and will often lead to an unstable compromise.

In central definitions of shared decision-making within medical consultations we find the concept of negotiation used to describe the interaction between patient and professional in case of conflict. It has been noted that the concept of negotiation is far from clear in this context and in other contexts it is used both in terms of rational deliberation and bargaining. The articles explores whether rational deliberation or bargaining accurately describes the negotiation in shared decision-making and finds that it fails to do (...) so on both descriptive and normative grounds. At the end some notes on further analysis is given and it is suggested that the interaction is more accurately described in terms of an internal balancing of values like patient best interest, patient autonomy and patient adherence by the professional that is accepted by the patient. (shrink)

The best-interests standard is a widely used ethical, legal, and social basis for policy and decision-making involving children and other incompetent persons. It is under attack, however, as self-defeating, individualistic, unknowable, vague, dangerous, and open to abuse. The author defends this standard by identifying its employment, first, as a threshold for intervention and judgment (as in child abuse and neglect rulings), second, as an ideal to establish policies or prima facie duties, and, third, as a standard of reasonableness. Criticisms of (...) the best-interests standard are reconsidered after clarifying these different meanings. (shrink)

Religion is an important element of end-of-life care on the paediatric intensive care unit with religious belief providing support for many families and for some staff. However, religious claims used by families to challenge cessation of aggressive therapies considered futile and burdensome by a wide range of medical and lay people can cause considerable problems and be very difficult to resolve. While it is vital to support families in such difficult times, we are increasingly concerned that deeply held belief in (...) religion can lead to children being potentially subjected to burdensome care in expectation of ‘miraculous’ intervention. We reviewed cases involving end-of-life decisions over a 3-year period. In 186 of 203 cases in which withdrawal or limitation of invasive therapy was recommended, agreement was achieved. However, in the 17 remaining cases extended discussions with medical teams and local support mechanisms did not lead to resolution. Of these cases, 11 (65%) involved explicit religious claims that intensive care should not be stopped due to expectation of divine intervention and complete cure together with conviction that overly pessimistic medical predictions were wrong. The distribution of the religions included Protestant, Muslim, Jewish and Roman Catholic groups. Five of the 11 cases were resolved after meeting religious community leaders; one child had intensive care withdrawn following a High Court order, and in the remaining five, all Christian, no resolution was possible due to expressed expectations that a ‘miracle’ would happen. (shrink)

This paper discusses the role of consent in decision making generally and its role in end of life decisions in particular. It outlines a conception of autonomy which explains and justifies the role of consent in decision making and criticises some misapplications of the idea of consent, particular the role of fictitious or “proxy” consents.Where the inevitable outcome of a decision must be that a human individual will die and where that individual is a person who can consent, then that (...) decision is ethical if and only if the individual consents. In very rare and extreme cases such a decision will be ethical in the absence of consent where it would be massively cruel not to end life in order to prevent suffering which is in no other way preventable.Where, however, the human individual is not a person, as is the case with abortion, the death of infants like Mary , or in the very rare and extreme cases of those who have ceased to be persons like Tony Bland, such decisions are governed by the ethics of ending the lives of non-persons. (shrink)

Western society today is less unified by a set of core values than ever before. Undoubtedly, the concept of moral consensus is a difficult one in a liberal, democratic and pluralistic society. But it is imperative to avoid a rigid majoritarianism where sensitive personal values are at stake, as in bioethics. Bioethics has become an influential part of public and professional discussions of health care. It has helped frame issues of moral values and medicine as part of a more general (...) effort to find consensus about some of the most perplexing questions of our time. But why is it thought that a moral consensus is important or that it deserves respect? How does moral consensus acquire legitimacy in a society that includes diverse value systems? How is moral consensus possible and how do small groups help create or distort consensus processes? Written by a medical school professor trained in philosophy, this timely work tackles these questions from philosophical, historical, and social scientific standpoints. It begins by describing the traditional ambivalence about consensus in Western culture as well as the uncertain relationship in modernity between consensus and expertise. After outlining the current bioethical consensus, the book gives philosophical and political analyses of the idea of consensus, then assesses the role of consensus in national ethics commissions and in the ethics committee movement. Moreno constructs an original, naturalistic philosophy of moral consensus, referred to as "bioethical naturalism", and then applies sociology and social psychology to actual consensus processes. The book concludes with an account of bioethics as a consensus-oriented social reform movement. This insightful volume will be essential reading for bioethicists, philosophers, physicians, members of ethics committees, and all those concerned with ethical and social issues in health care. (shrink)

Objectives: The objectives of the study were to assess similarities and differences between breast cancer patients and their husbands in terms of doctor-patient/spouse relationships and shared decision making; and to investigate the association between breast cancer patients and husbands in terms of preference of type of doctor, doctor-patient relationship, and shared decision making regarding medical treatment. Method: Fifty-seven women with breast cancer, and their husbands, completed questionnaires measuring doctor-patient/spouse relationships, and decision making regarding medical treatment. Results: Patients believe they have (...) a key role in the medical decision-making process and that the participation of their husbands, and their agreement with the decision, is important. Both breast cancer patients and their husbands prefer a shared decision-making process to paternalistic or autonomy-based approaches. Conclusion: In contrast to legal and bioethical approaches, which focus on the patient as the primary decision maker, this study reflects a practical recognition of the role of the breast cancer patient's husband in the decision-making process. It also reflects a relational rather than an individualistic perception of patient autonomy. (shrink)

Minors are generally considered incompetent to provide legally binding decisions regarding their health care, and parents or guardians are empowered to make those decisions on their behalf. Parental authority is not absolute, however, and when a parent acts contrary to the best interests of a child, the state may intervene. The best interests standard is the threshold most frequently employed in challenging a parent''s refusal to provide consent for a child''s medical care. In this paper, I will argue that the (...) best interest standard provides insufficient guidance for decision-making regarding children and does not reflect the actual standard used by medical providers and courts. Rather, I will suggest that the Harm Principle provides a more appropriate threshold for state intervention than the Best Interest standard. Finally, I will suggest a series of criteria that can be used in deciding whether the state should intervene in a parent''s decision to refuse medical care on behalf of a child. (shrink)

Death and grief in the ancient world -- Predictions and disability in Rome.

Children: Rights and Childhood is widely regarded as the first book to offer a detailed philosophical examination of children’s rights. David Archard provides a clear and accessible introduction to a topic that has assumed increasing relevance since the book’s first publication. -/- The third edition has been fully revised and updated throughout with a new chapter providing an in-depth analysis of the United Nations Convention on the Rights of the Child (UNCRC) and Part 2 has been restructured to move the (...) reader from general theoretical considerations of children’s rights through to practical issues. This volume is ideal reading for advanced studies across Philosophy, Social Work, Law, Childhood Studies, Politics, and Social Policy. (shrink)

When making decisions for adults who lack decision-making capacity and have no discernable preferences, widespread support exists for using the Best Interests Standard. This policy appeals to adults and is compatible with many important recommendations for persons facing end-of-life choices.Common objections to the policy are discussed as well as different meanings of this Standard identified, such as using it to express goals or ideals and to make practical decisions incorporating what reasonable persons would want. For reasons of consistency, fairness, and (...) compassion, this standard should be used for all incapacitated persons. (shrink)

Whether children have rights is a debate that in recent years has spilled over into all areas of public life. It has never been more topical than now as the assumed rights of parents over their children is challenged on an almost daily basis. David Archard offers the first serious and sustained philosophical examination of children and their rights. Archard reviews arguments for and against according children rights. He concludes that every child has at least the right to the best (...) possible upbringing. Denying that parents have any significant rights over their children, he is able to challenge current thinking about the proper roles of state and family in rearing children. Crucially, he considers the problem of how to define and understand `child abuse'. (shrink)

The best interest standard is the threshold most frequently employed by physicians and ethics consultants in challenging a parent’s refusal to provide consent for a child’s medical care. In this article, I will argue that the best interest standard has evolved to serve two different functions, and that these functions differ sufficiently that they require separate standards. While the best interest standard is appropriate for choosing among alternative treatment options for children, making recommendations to parents, and making decisions on behalf (...) of a child when the legal decision makers are either unable to make a decision or are in dispute, a different standard is required for deciding when to seek state interference with parental decision-making authority. I will suggest that the harm principle provides a more appropriate threshold for determining when to seek state intervention than the best interest standard. (shrink)

In patient centred care, shared decision making is a central feature and widely referred to as a norm for patient centred medical consultation. However, it is far from clear how to distinguish SDM from standard models and ideals for medical decision making, such as paternalism and patient choice, and e.g., whether paternalism and patient choice can involve a greater degree of the sort of sharing involved in SDM and still retain their essential features. In the article, different versions of SDM (...) are explored, versions compatible with paternalism and patient choice as well as versions that go beyond these traditional decision making models. Whenever SDM is discussed or introduced it is of importance to be clear over which of these different versions are being pursued, since they connect to basic values and ideals of health care in different ways. It is further argued that we have reason to pursue versions of SDM involving, what is called, a high level dynamics in medical decision-making. This leaves four alternative models to choose between depending on how we balance between the values of patient best interest, patient autonomy, and an effective decision in terms of patient compliance or adherence: Shared Rational Deliberative Patient Choice, Shared Rational Deliberative Paternalism, Shared Rational Deliberative Joint Decision, and Professionally Driven Best Interest Compromise. In relation to these models it is argued that we ideally should use the Shared Rational Deliberative Joint Decision model. However, when the patient and professional fail to reach consensus we will have reason to pursue the Professionally Driven Best Interest Compromise model since this will best harmonise between the different values at stake: patient best interest, patient autonomy, patient adherence and a continued care relationship. (shrink)

On one conception of “best interest” there can only be one course of action in a given situation that is in a person’s best interest. In this paper we will first consider what theories of “best interest” and rational decision-making that can lead to this conclusion and explore some of the less commonly appreciated implications of these theories. We will then move on to consider what ethical theories that are compatible with such a view and explore their implications. In the (...) second part of the paper we will explore a range of possible criticisms of these views. And in the third part we will criticise the view that a court is always or even often in a good position to decide what the patient’s best interest is. In the fourth and final part we will put forward a reconstructive proposal aimed at saving whatever is sound in the “best interest” conception. (shrink)

The ‘best interests’ standard is a highly seductive standard in English law. Not only does it appear to be fairly uncontroversial but it also presents as the most sensible, objective and ‘fair’ method of dealing with decision making on behalf of those who are perceived to be the most vulnerable within society. This article aims to provide a critical appraisal of how the standard has been applied within family law, to outline how the standard is to be applied within healthcare (...) law and, finally, to assess the relevance of the family law experience of the best interests standard to the operation of the standards as envisaged by the MCA. (shrink)

Philosophy has long been concerned with ‘moral status’. Discussions about the moral status of children, however, seem often to promote confusion rather than clarity. Using the creation of ‘savior siblings’ as an example, this paper provides a philosophical critique of the moral status of children and the moral relevance of parenting and the role that formative experience, regret and relational autonomy play in parental decisions. We suggest that parents make moral decisions that are guided by the moral significance they attach (...) to children, to sick children and most importantly, to a specific sick child (theirs). This moral valorization is rarely made explicit and has generally been ignored by both philosophers and clinicians in previous critiques. Recognizing this, however, may transform not only the focus of bioethical discourse but also the policies and practices surrounding the care of children requiring bone marrow or cord blood transplantation by better understanding the values at stake behind parental decision making. (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)

In the context of critically ill children, Baines contended that the best interests test was neither objective nor coherent, and thus of little applicability in making end-of-life decisions. In reply, Bridgeman attempted to refute these claims through legal analysis and contended that the doctrine allowed for responsive, fact-specific, context-sensitive and prudential reasoning. This paper is a response to Bridgeman, and argues that an examination of case law reveals the subjective and value-laden nature of the test. Courts must make decisions in (...) contested cases, but there is no reason to hold that a judge can divine the best interests of a critically ill child better than either parents or medical staff. This paper analyses a number of cases where judicial decisions appear at odds with the child's best interests, and argues that as the outcome depends upon the value system of the decision-maker the test is unhelpful in contested end-of-life cases. (shrink)

Next SectionIn response to public outrage stemming from exposés of animal abuse in research laboratories, the US Congress in 1985 mandated Institutional Animal Care and Use Committees (IACUCs) to oversee animal use at institutions receiving federal grants. IACUCs were enjoined to respect public concern about the treatment of animals in research, but they were not specifically instructed whether or not to perform ethical cost-benefit analyses of animal research protocols that IACUCs have chosen, with approval contingent upon a balancing of animal (...) pain and suffering against a reasonable expectation of resultant human benefit. IACUCs have chosen not to make such ethical judgments but, rather, restrict themselves to an advisory role, often tweaking the details of animal-use protocols, but eventually approving all of them. This disinclination by IACUCs to take a broader ethical view of their authority and responsibilities may reflect a membership composition highly skewed towards animal researchers themselves (67%) and institutional veterinarians (15%), both with vested interests in continuing animal research. The resultant ethical monoculture may impair IACUC's ability to meet public concern for laboratory animal welfare. Psychological research has established that unconscious bias affects us all, that deliberations among the like-minded lead to adapting extremist positions, and that groupthink blinds organisations to alternatives that might be obvious to outsiders. Taken together, skewed IACUC membership composition and psychological research insights into unconscious bias and groupthink suggest that an infusion of ethical diversity by increasing the percentage of institutionally unaffiliated members on IACUCs would broaden their ethical perspectives and enable them to better address public concerns about laboratory animal welfare. (shrink)

This paper presents a systematic account of ethical issues actualised in different areas, as well as at different levels and stages of health care, by introducing organisational and other procedures that embody a shift towards person centred care and shared decision-making (PCC/SDM). The analysis builds on general ethical theory and earlier work on aspects of PCC/SDM relevant from an ethics perspective. This account leads up to a number of theoretical as well as empirical and practice oriented issues that, in view (...) of broad advancements towards PCC/SDM, need to be considered by health care ethics researchers. Given a PCC/SDM-based reorientation of health care practice, such ethics research is essential from a quality assurance perspective. (shrink)

ABSTRACT In this essay, Paul Lauritzen examines Richard B. Miller's liberal account of pediatric ethics by asking if the duty to promote a child's basic interests is substantial enough to secure the well‐being of children. This question is raised in light of two case studies: daytime TV talk shows that broadcast interviews with sexually active children, and a medical study conducted to test the effect of growth hormone treatment on adult height in peripubertal children. In both cases, Lauritzen argues, children (...) are subjected to potential harms that are not easily explained, and therefore not easily prevented, by appeals to basic interests. (shrink)

I argue that Brierley et al are wrong to claim that parents who request futile treatment are acting against the interests of their child. A better ethical ground for withholding or withdrawing life-prolonging treatment is not that it is in the interests of the patient to die, but rather on grounds of the limitation of resources and the requirements of distributive justice. Put simply, not all treatment that might be in a person's interests must ethically be provided.

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.

Substitute decision-makers for severely disabled neonates who can be kept alive but who will require constant medical interventions and will die at the latest in their teens are faced with a difficult decision when trying to decide whether to keep the infant alive. By and large, the primary focus of their decision-making centers on what is in the best interests of the newborn. The best-interests criterion, in turn, is importantly conditioned by quality-of-life considerations. However, the concept of quality of life (...) is logically and ethically different for patients with a developing as opposed to a developed awareness. Unfortunately, this difference is ignored by current quality-of-life considerations, there are no quality-of-life measures that take this difference into account, and decision-making proceeds entirely without acknowledging this fact. This note outlines why this is a problem and why there is a need for a new set of tools that incorporates this distinction if the substitute decision-makers are to apply the best-interest criterion in a meaningful way. (shrink)

In an earlier paper I argued that we do not have an objective conception of best interests and that this is a particular problem because the courts describe that they use an ‘…objective approach or test. That test is the best interests of the patient’ when choosing for children. I further argued that there was no obvious way in which we could hope to develop an objective notion of best interests. As well as this, I argued that a best-interest-based approach (...) was a particular problem around the time of death of some children. A response from a legal perspective argued that, while there is not a clear conception of objective best interests, the courts have a well-described approach to finding a child's objective best interests. In this paper, I argue that without clear agreement on an objective conception of best interests, the courts are unable to locate an objective sense of best interests and that the solutions do not solve the problems that were identified in the initial paper ‘Death and best interests’. (shrink)

The recent MB case involved a dispute between an infant’s parents and his medical team about the appropriateness of continued life support. The dispute reflected uncertainty about two key factors that inform medical decision making for seriously ill infants: both the amount of pain MB experiences and the extent of his cognitive capacities are uncertain. Uncertainty of this order makes decision making in accordance with the best-interests principle very problematic. This article addresses two of the problems that cases such as (...) that of MB pose for those charged with making medical decisions for infants. First, the question of the moral significance of the interest in avoiding pain is considered. It is claimed that this interest can be outweighed by higher-order interests such as those related to autonomy but that where such higher-order interests do not exist, the interest in avoiding pain should be prioritised. Second, the question of how to proceed in cases in which the level of pain or the extent of an infant’s higher-order interests cannot be decisively established is considered. It is suggested that when genuine uncertainty over the interests of an infant exists, parental views about treatment should prevail.The English family courts recently adjudicated on another case involving conflict between parents and a medical team over the provision of life-prolonging medical treatment for an infant. At the time of the ruling, MB was an 18-month-old boy with type I spinal muscular atrophy. His life expectancy was very short , he was almost completely paralysed and he required constant ventilation. MB’s parents wanted a tracheotomy to be performed to facilitate long-term ventilation and allow for some independence from the hospital ward, but the …. (shrink)

Dilemmas about resuscitation and life-prolonging treatment for severely compromised infants have become increasingly complex as skills in neonatal care have developed. Quality of life and resource issues necessarily influence management. Our Institute of Medical Ethics working party, on whose behalf this paper is written, recognises that the ultimate responsibility for the final decision rests with the doctor in clinical charge of the infant. However, we advocate a team approach to decision-making, emphasising the important role of parents and nurses in the (...) process. Assessing the relative burdens and benefits can be troubling, but doctors and parents need to retain a measure of discretion; legislation which would determine action in all cases is inappropriate. Caution should be exercised in involving committees in decision-making and, where they exist, their remit should remain to advise rather than to decide. Support for families who bear the consequences of their decisions is often inadequate, and facilitating access to such services is part of the wider responsibilities of the intensive care team. The authors believe that allowing death by withholding or withdrawing treatment is legitimate, where those closely involved in the care of the infant together deem the burdens to be unacceptable without compensating benefits for the infant. As part of the process accurate and careful recording is essential. (shrink)

The management of child protection concerns arouses strong emotions and controversies and creates ethical tensions for all concerned. This paper provides a rational analysis of some of the issues involved and suggests responses to them. The ethical and legal duties of health-care professionals are to act in the best interests of the child by safeguarding children and reporting concerns. But this may involve conflicts with parents and produce reluctance of professionals to become involved, especially in controversial types of abuse. Mandatory (...) reporting of concerns might overcome such reluctance, but may be ineffective in the face of diagnostic uncertainties. Assembly of a stronger diagnostic evidence base would seem ethically justified, but organization of the necessary case controlled studies might be problematic. Even with a comprehensive evidence base, individual diagnoses of abuse will always involve value judgements that should be underpinned by effective training and assessment of core competencies of professionals. These manoeuvres are unlikely to prevent both justified and vexatious complaints, often in relation to breaches in professional duties or concerning professional misconduct. The tendency to blame experts may have contributed to a reluctance of other professionals to become involved, despite proposals for reforms in the expert witness and court systems. Current approaches to child protection may neither promote greater understanding nor be in the best interests of children. A revised social contract for the effective protection of children could include: a duty of care that adequately addresses the primacy of the child's welfare; the acquisition of a sound evidence base; professional transparency and accountability (but with protection from malicious and vexatious complaints); and a shift emphasis towards a more inquisitorial system that embraced the principles of truth and reconciliation. (shrink)

Consent ought to be required to withhold treatment that is in a patient’s best interests to receive. Do not resuscitate orders are examples of best interests assessments at the end of life. Such assessments represent value judgments that cannot be validly ascertained without patient input. If patient input results in that patient dissenting to the DNR order then individual physicians are not justified in overriding such dissent. To do so would give unjustifiable primacy to the values of the individual physician. (...) Therefore patient consent is effectively required to write a DNR order. Patient dissent to a DNR order should trigger a fair process mechanism to resolve the dispute. (shrink)

Margaret Mohrmann, Paul Lauritzen, and Sumner Twiss raise questions about my account of basic interests, liberal theory, and the challenges of multiculturalism as developed in "Children, Ethics, and Modern Medicine." Their questions point to foundational issues regarding the justification and limitation of parental authority to make decisions on behalf of children in medical and other contexts. One of the central questions in that regard is whether adults' decisions deserve to be respected, especially when they seem contrary to a child's or (...) adolescent's basic interests. Questions about respect, in turn, focus attention on others' decisions about what seems good for families and children, decisions that may be paternalistic or utilitarian. Such decisions are further complicated by a child's or adolescent's budding autonomy and need for respect and recognition. Pediatric bioethics grounded in an account of a child's basic interests produces a theory of negative and positive rights for assessing adults' actions in relation to children, especially (but not only) when adults demand respect in their expressions of care. (shrink)