This paper addresses three factors that have contributed to shifts in decision making in health care. First, the notion of patient autonomy, which has changed due to the rise of patient-centred approaches in contemporary health care and the re-conceptualization of the physician-patient relationship. Second, the understanding of patient autonomy has broadened to better engage patient participation. Third, the need to develop cross-cultural health care ethics. Our paper shows that the shift in the (...) West from the individual to the relational self indicates an important change in the understanding of autonomy through the lens of culture. Practices that recognize the notion of the relational self allow for a more balanced view of autonomy and a richer conception of moral agency. (shrink)

The family, like so many other modern institutions, often looks more like an arena of competing wills than an ordered life in common. If we hope, therefore, to protect the special role that parents should have in relation to their children, and that the family in general should have in relation to its members, we will need a much more developed account of the goods that are at stake and why we think they are important enough to require authority, even (...) when members of the family oppose the decisions of that authority. This essay develops an older account of authority, one rooted in the thought of Aristotle and St. Thomas Aquinas, and applies this account to our present difficulties concerning the authority of the family over its members in health care decision making. (shrink)

Most countries appear to believe that their health system is in a state of semi-crisis with expenditures rising rapidly, with the benefits of many services unknown and with pressure from the public to ensure access to a comprehensive range of services. But whose values should inform decision-making in the health area, and should the influence of different groups vary with the level of decision-making? These questions were put to 54 members of the public and (...) health professionals in eight focus groups. Adopting a different perspective from other studies, participants were not asked if particular groups should be involved in decisions but rather through deliberation and discussion nominated their own potential decision makers. This delivered a clear message that participants saw a legitimate role for a broad range of stakeholders in priority-setting decisions so as to incorporate a diversity of expertise and opinion. Companion themes were the acknowledgment that decisions involve ethical judgments and are not purely technical, that the power of special interest groups (such as clinicians) should be kept in check, and that the process by which decisions are reached is important. The results suggest that qualitative methods of investigation have the potential to improve the legitimacy of policy decisions by contributing to a better understanding of the values of the public and health professionals, and by expanding the range of options available for further research. (shrink)

This text provides a comprehensive and timely examination of the most pertinent factors affecting institutional ethics committees, for ethicists, trustees, administrators, physicians, clergy, nurses, social workers, attorneys and others with an interest in ethics committees.

In this paper I examine the debate between ‘protectionists’ and ‘liberationists’ concerning the appropriate role of minors in decision-making about their health care, focusing particularly on disagreements between the two sides regarding adolescents. Protectionists advocate a more traditional, paternalistic approach in which minors have relatively little input into the healthcare decision-making process, and decisions are made for them by parents or other adults, guided by a commitment to the patient's best interests. Liberationists, on the (...) other hand, argue in favour of expanded participation by minors in treatment decisions, and decision-making authority for at least some adolescents. My examination of the debate includes discussion of liberationist shifts that have taken place in the medical community as well as in legal policy and practice, and consideration of recent research on adolescent development. In the final section of the paper, I propose a moderate position that addresses both liberationist and protectionist concerns. (shrink)

Bester offers powerful arguments for why the harm principle cannot replace the best interest standard (BIS) as a guide for, and limit on, surrogate healthcare decision making (Bester 2018). Since B...

There is a curious asymmetry in cases where the use of religious language involves a breakdown in communication and leads to a seemingly intractable dispute. Why does the use of religious language in such cases almost always arise on the side of patients and their families, rather than on the side of clinicians or others who work in healthcare settings? I suggest that the intractable disputes arise when patients and their families use religious language to frame their problem and the (...) possibilities of solution. Unlike clinicians, they are not bilingual and thus lack the capacity to understand and negotiate differences in terms that are responsive to those who work in healthcare settings. After considering a representative case, I explore whether an ethics consultant or chaplain can function as a translator and suggest that, at best, such efforts at mediation depend on contingent aspects of a case and will only be partially successful. To appreciate limits on the role for bilingual translators, I consider a futility dispute where a parent using religious language demands that everything be done for a permanently unconscious child. I challenge the traditional interpretation that says the parent values “mere duration of biological life irrespective of quality.” From a religious perspective, human life is never “merely biological.” This effort to slot the dispute into standard philosophical schemas misses what is crucial in the dispute. I suggest that a better interpretation views the dispute at a meta-level as one about whether withholding and withdrawing care is morally distinguishable from killing. Curiously, this interpretation makes the advocate of futile care into an ally of those “quality of life” advocates who also challenge this distinction. The crux of their dispute now rests on the normative ethics of killing. While I think my interpretation comes much closer to the views of many who demand ‘futile care,’ I suggest that it still falls short because of the way it reconstructs the religious concerns in nonreligious terms. I close by considering an analogy between the language of suffering and the language of faith, suggesting that both require a much richer understanding of the narratives that orient the lives of patients and their families. (shrink)

This paper considers ways of involving consumers in decisions regarding the allocation of scarce health service resources. Specifically, two levels of consumer participation are highlighted and discussed. These are: (1) at the level of deciding whether or not a particular service should be introduced or its scale changed; and (2) at the level of deciding how best to provide a service once it has been decided that the servicewill be provided. The limitations of the current methods of involving consumers (...) are outlined and two alternative approaches discussed. These are willingness to pay and conjoint analysis. (shrink)

Life saving or life sustaining treatment may not be instigated in the clinical setting when such treatment is deemed to be futile and therefore not in the patient’s best interests. The concept of futility, however, is related to many assumptions about quality and quantity of life, and may be relied upon in a manner that is ethically unjustifiable. It is argued that the concept of futility will remain of limited practical use in making decisions based on the best interests (...) principle because it places such high demands on the individual responsible for decision making. This article provides a critical analysis of futility (in the context of the best interests decision-making principle), and proposes an ethically defensible notion of futility. (shrink)

According to what members of our research team (Scholten and Gather 2017) have proposed to call “the competence model,” competence is a necessary condition for informed consent. This model entails...

The Truth and Reconciliation Commission of Canada made it clear that understanding the historical, social, cultural, and political landscape that shapes the relationships between Indigenous peoples and social institutions, including the health care system, is crucial to achieving social justice. How to translate this recognition into more equitable health policy and practice remains a challenge. In particular, there is limited understanding of ways to respond to situations in which conventional practices mandated by the state and regulated by (...) its legal apparatus come into direct conflict with the values and autonomy of Indigenous individuals, communities, and nations. In this paper, we consider two cases of conflict between Indigenous and biomedical perspectives to clarify some of the competing values. We argue for the importance of person‐ and people‐centered approaches to health care. These value conflicts must be understood at multiple levels to clarify their personal, social, cultural, and political dimensions. Taking into account the divergence between epistemic cultures and communities allows us to understand the multiple narratives deployed in decision‐making processes in clinical, community, and juridical contexts. Recognizing the knowledge claims of Indigenous peoples in health care can help clinicians avoid reinforcing the divides created by the structural and institutional legacy of colonialism. This analysis also provides ways to adjudicate conflicts in health care decision‐making by disentangling cultural, political, medical, and pragmatic issues to allow for respectful dialogue. Insofar as the engagement with cultural pluralism in health care rights is conducted with reciprocal recognition, the medical community and Indigenous peoples can address together the difficult question of how to integrate different epistemic cultures in the health care system. (shrink)

The Patient Protection and Affordable Care Act represents the most significant reform of the United States health care system in decades. ACA also substantially amplifies the federal role in health care regulation. Among other provisions, ACA expands government health care programs, imposes detailed federal standards for commercial health insurance policies, creates national requirements on employers and individuals, and enlists state administrative capacity to implement various federal reforms. In response, a persistent voice in (...) the protracted, contentious debate surrounding ACA was, and continues to be, resistance from states. The rhetoric of federalism — states’ rights, reserved powers, state sovereignty, limited government, and local diversity — resonates deeply even around provisions of ACA that do not specifically implicate state interests. For example, the loudest and most persistent state objections target the new mandate that individuals maintain health insurance, a requirement imposed by ACA and enforced through federal tax penalties. (shrink)

In this paper we explore the relation between health-care needs and patients’ desires within shared decision-making in a context of priority setting in health care. We begin by outlining some general characteristics of the concept of health-care need as well as the notions of SDM and desire. Secondly we will discuss how to distinguish between needs and desires for health care. Thirdly we present three cases which all aim to bring (...) out and discuss a number of queries which seem to arise due to the double focus on a patient’s need and what that patient desires. These queries regard the following themes: the objectivity and moral force of needs, the prediction about what kind of patients which will appear on a micro level, implications for ranking in priority setting, difficulties regarding assessing and comparing benefits, and implications for evidence-based medicine. (shrink)

Philosophers of science have insisted that evidence of underlying mechanisms is required to support claims about the effects of medical interventions. Yet evidence about mechanisms does not feature on dominant evidence-based medicine “hierarchies.” After arguing that only inferences from mechanisms (“mechanistic reasoning”)—not mechanisms themselves—count as evidence, I argue for a middle ground. Mechanistic reasoning is not required to establish causation when we have high-quality controlled studies; moreover, mechanistic reasoning is more problematic than has been assumed. Yet where the problems can (...) be overcome, mechanistic reasoning can and should be used as evidence. (shrink)

The purpose of this study was to identify how older Korean people seek information and their desire to participate in decision making about their health care. A total of 165 elderly people living in Seoul, South Korea, participated in the study. Data were collected during individual interviews using the Autonomy Preference Index. The mean information-seeking score was high. The mean score for their desire to participate with a physician in decision making was lower, but (...) this was higher when family members were involved. The study indicates that many older people want to receive information about their health care. Families (or guardians), as well as older people themselves, should be included in the decision-making process. Nurses can encourage older people to express their wishes, while treating each individual with respect. (shrink)

This is a new edition of a classic textbook in health care ethics, one that offers an alternative to the principle-based approach from Beauchamp and Childress (Principles of Biomedical Ethics, now in its seventh edition from OUP) and traditional Catholic approaches of Ashley and O'Rourke. In the early chapters Devettere spells out the meaning of ethics and the importance of prudential reasoning in seeking the good life. The rest of the book deals with issues and cases, including determinations (...) of life and death, reproduction and research and genetics, and the distribution of health care. In this fourth edition Devettere updates all chapters and adds new cases and new sections on the following: neuroscience, social psychology, overriding advance directives, studies on the fetus, the palliative care movement, cardiopulmonary resuscitation, pharmacists and reproductive issues, prenatal life and abortion, neonatal testing and mandatory vaccinations, the US governments' STD research in Guatemala, the emergence of biobanks, facial transplantations, genetic testing, legal issues around the Affordable Care Act, and more. This is an accessible and comprehensive textbook covering all aspects of the field. (shrink)

The substituted judgement principle is often recommended as a means of promoting the self-determination of an incompetent individual when proxy decision makers are faced with having to make decisions about health care. This article represents a critical ethical analysis of this decision-making principle and describes practical impediments that serve to undermine its fundamental purpose. These impediments predominantly stem from the informality associated with the application of the substituted judgement principle. It is recommended that the principles (...) upon which decisions are made about health care for another person should be transparent to all those involved in the process. Furthermore, the substituted judgement principle requires greater rigour in its practical application than currently tends to be the case. It may be that this principle should be subsumed as a component of advance directives in order that it fulfils its aim of serving to respect the self-determination of incompetent individuals. (shrink)

Though the chief responsibility for providing for the health care of older Americans has been (and should remain) society's, there has been increasing interest in private solutions. Individual provision, however, would require not only adequate wealth but prudent planning, demanding in turn more discipline, self-control, and foresightedness than many individuals are normally capable of. One possible corrective is pre-commitment, a strategy of binding oneself to a plan chosen to allocate resources optimally over the life span. Though pre-commitment may (...) have some important uses, however, it is far from clear that people should be encouraged or enabled to rely upon it for old-age health care planning. The present paper examines some of the philosophical and policy concerns attendant to the use of pre-commitment strategies for resource allocation in old age. Keywords: elderly, health care, justice, resource allocation CiteULike Connotea Del.icio.us What's this? (shrink)

In October 1993, a survey of health care agency administrators was undertaken shortly after they had experienced two sudden reductions in public funding. The purpose of this investigation was to gain insight into the role of ethics in health administrator decision making. A mail questionnaire was designed for this purpose. Descriptive statistics and content analysis were used to summarize the data. Staff reductions and bed closures were the two most frequently reported mechanisms for addressing the (...) funding reductions. Most administrators did not believe that these changes would have a negative public impact. In contrast, the majority indicated that future changes in reaction to additional funding reductions would have a negative public impact. Approximately one-third of the administrators reported ethics to be an element of recent administrative decision making, and one-half could foresee that ethics would be important in the future if reductions continued. These findings are discussed in relation to ethics. Issues for additional research are outlined. (shrink)

Decision making is a crucial element in the field of medicine. The physician has to determine what is wrong with the patient and recommend treatment, while the patient has to decide whether or not to seek medical care, and go along with the treatment recommended by the physician. Health policy makers and health insurers have to decide what to promote, what to discourage, and what to pay for. Together, these decisions determine the quality of (...) class='Hi'>health care that is provided. Decision Making in Health Care is an up-to-date, comprehensive overview of the field of medical decision making. It includes quantitative theoretical tools for modeling decisions, psychological research on how decisions are actually made, and applied research on how physician and patient decision making can be improved. (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)

The purpose of this book is to assist health care professionals in understanding some of the complex contemporary issues that they confront and to provide guidance in making decisions. These issues are described and analyzed in the context of philosophical principles and methods in language that is understandable to the professional who is unfamiliar with the study of philosophy and ethics. -from Preface.

The purpose of this overview of published articles on decision making in paediatric care was to identify important aspects of its possible use in clinical practice and to obtain a base for future research. A literature review was undertaken utilizing snowball sampling to identify articles because of the diversity present within the area of decision making in paediatric care. The databases PubMed and CINAHL were used. The search was limited to articles published in English (...) during the period 1994-2004. The analysis entailed a series of comparisons across articles, focusing on major areas of enquiry and patterns of results. Various levels of decision making are described because these seem to form a basis for how decisions are made. Concepts found to be of importance for decision making are described under the following headings: competence, the child’s best interests, knowledge, values and attitudes, roles and partnership, power, and economy. Further research is suggested. (shrink)

The American Journal of Bioethics, Volume 12, Issue 10, Page 49-50, October 2012.

This book details the underlining philosophical approaches to ethical theories and how these can be used to structure an approach to day-to-day ethical issues, and thereby resolve them. It provides an understanding of the ethical theories which underpin decisions in health care by first laying the foundation with a philosophical framework and then going on to develop this into an examination of contemporary health care dilemmas and professional issues. Not available in the U.S.

This article deals with making decisions about starting terminal care. The results are part of a larger survey on nurses’ conceptions of terminal care in community health centres in Finland. The importance, frequency and timing of decision making as well as communication and the number of investigations and procedures carried out are examined. The relationship between decision making and the size of a health centre’s catchment population is also discussed. The results (...) make it possible to compare the current situation in Finland with the national law on patients’ rights. The sample consisted of 328 nurses who worked on the wards of 32 community health centres. The data were collected by means of a structured questionnaire and processed with the Statistical Package for Social Sciences software. The nurses agreed that explicit decision making and documentation about starting terminal care were necessary, but it was highlighted that the practice had many shortcomings. Decisions were often made too late and the patients were not always aware of their situation; family members and the nursing staff were mostly better informed. It was noted that many investigations and other procedures were carried out on terminally ill patients, often at the request of family members. Decision making was found to have some relationship to the size of a health centre’s catchment area. (shrink)

This paper discusses the problematic and sometimes implicit nature of some central notions and criteria used in debates about inclusion (or exclusion) of health care services in the health care benefit package. An analysis of discussions about four health care services—lungtransplantation, statins, (sildenafil (viagra) and rivastigmine—illustrates a case-by-case approach and inconsistent use of criteria, which present a challenge to develop a decision-making procedure in which important criteria or central notions can be discussed (...) explicitly. (shrink)