Background Respect for autonomy is a key principle in bioethics. However, respecting autonomy in practice is complex because most people define themselves and make decisions influenced by a complex network of social relationships. The extent to which individual autonomy operates for each partner within the context of decision-making within marital or similar relationships is largely unexplored. This paper explores issues related to decision-making by couples for health care and the circumstances under which such a practice should be respected as compatible (...) with autonomous decision-making. Discussion We discuss the concept of autonomy as it applies to persons and to actions, human interdependency and gender roles in decision-making, the dynamics and outcomes of couples’ joint decision-making, and the ethics of couples’ joint decision-making. We believe that the extent to which couples’ joint decision-making might be deemed ethically acceptable will vary depending on the context. Given that in many traditional marriages the woman is the less dominant partner, we consider a spectrum of scenarios of couples’ joint decision-making about a woman’s own health care that move from those that are acceptably autonomous to those that are not consistent with respecting the woman’s autonomous decision-making. To the extent that there is evidence that both members of a couple understand a decision, intend it, and that neither completely controls the other, couples’ joint decision-making should be viewed as consistent with the principle of respect for the woman’s autonomy. At the other end of the spectrum are decisions made by the man without the woman’s input, representing domination of one partner by the other. Conclusions We recommend viewing the dynamics of couples’ joint decision-making as existing on a continuum of degrees of autonomy. This continuum-based perspective implies that couples’ joint decision-making should not be taken at face value but should be assessed against the specific cultural, ethnic, and religious backgrounds and personal circumstances of the individuals in question. (shrink)

Concern for human vulnerability seems to be at the heart of bioethical inquiry, but the concept of vulnerability is under-theorized in the bioethical literature. The aim of this article is to show why bioethics needs an adequately theorized and nuanced conception of vulnerability. We first review approaches to vulnerability in research ethics and public health ethics, and show that the bioethical literature associates vulnerability with risk of harm and exploitation, and limited capacity for autonomy. We identify some of the challenges (...) emerging from this literature: in particular, how to reconcile universal human vulnerability with a context-sensitive analysis of specific kinds and sources of vulnerability; and how to reconcile obligations to protect vulnerable persons with obligations to respect autonomy. We then briefly survey some of the theoretical resources available within the philosophical literature to address these challenges, and to assist in understanding the conceptual connections between vulnerability and related concepts such as harm, exploitation, needs, and autonomy. We also sketch out a taxonomy of sources and kinds of vulnerability. Finally, we consider the implications for policy evaluation of making vulnerability an explicit and central focus of bioethics. Our investigation is in the form of a broad survey motivating a research agenda rather than a detailed analysis. (shrink)

There can be little doubt, at least in the Western world, that autonomy is the ruling principle in contemporary bioethics. In spite of its ‘triumph’ however, the dominance of the utilitarian concept of autonomy is being increasingly questioned. In this paper, I explore the nature of autonomy, how it came to displace the Hippocratic tradition in medicine and how different concepts of autonomy have evolved. I argue that the reduction of autonomy to ‘the exercise of personal choice’ in medicine has (...) led to a ‘tyranny of autonomy’ which can be inimical to ethical medical practice rather than conducive to it. I take the case of Kerrie Wooltorton as an illustration of how misplaced adherence to respect for patient autonomy can lead to tragic consequences. An analysis of autonomy based on the work of Rachel Haliburton is described and applied to the role of autonomy in a recent bioethical debate — that arising from Savulescu's proposal that conscientious objection by health-care professionals should not be permit.. (shrink)

Old age often brings with it chronic conditions that make it difficult to handle the activities of daily life. In the United States, unpaid family caregivers, predominantly women, provide most of this care. I explore why this situation has come about and persists and further ground my image of a dystopian future in neoliberalism, the policymaking process, and contemporary politics. I then offer an ethical and policy foundation for an alternative approach to providing needed long-term care services and make provisional (...) suggestions for actions that ought to be taken now and in the near future to avoid this dystopian future. (shrink)

Background: Older people in institutional care should be allowed to live a meaningful life in a home-like environment consistent with their own free will. Research on actualisation of older people’s own free will in nursing home context is scarce. Objectives: The purpose of this study was to describe older people’s experiences of free will, its actualisation, promoters and barriers in nursing homes to improve the ethical quality of care. Research design: Fifteen cognitively intact older people over 65 years in four (...) nursing homes in Southern Finland were interviewed. Giorgi’s phenomenological method expanded by Perttula was used to analyse the data. Ethical considerations: Chief administrators of each nursing home gave permission to conduct the study. Informants’ written informed consent was gained. Findings: Older people described free will as action consistent with their own mind, opportunity to determine own personal matters and holding on to their rights. Own free will was actualised in having control of bedtime, dressing, privacy and social life with relatives. Own free will was not actualised in receiving help when needed, having an impact on meals, hygiene, free movement, meaningful action and social life. Promoters included older people’s attitudes, behaviour, health, physical functioning as well as nurses’ ethical conduct. Barriers were nurses’ unethical attitudes, institution rules, distracting behaviour of other residents, older people’s attitudes, physical frailty and dependency. Discussion: Promoting factors of the actualisation of own free will need to be encouraged. Barriers can be influenced by educating nursing staff in client-orientated approach and influencing attitudes of both nurses and older people. Conclusion: Results may benefit ethical education and promote the ethical quality of older people’s care practice and management. (shrink)

Background: Obtaining patients’ informed consent is an ethical and legal obligation in healthcare practice. Whilst the law provides prescriptive rules and guidelines, ethical theories of autonomy provide moral foundations. Models of practice of consent, have been developed in the bioethical literature to assist in understanding and integrating the ethical theory of autonomy and legal obligations into the clinical process of obtaining a patient’s informed consent to treatment.Aims: To review four models of consent and analyse the way each model incorporates the (...) ethical meaning of autonomy and how, as a consequence, they might change the actual communicative process of obtaining informed consent within clinical contexts.Methods: An iceberg framework of consent is used to conceptualise how ethical theories of autonomy are positioned and underpin the above surface, and visible clinical communication, including associated legal guidelines and ethical rules. Each model of consent is critically reviewed from the perspective of how it might shape the process of informed consent.Results and discussion: All four models would alter the process of obtaining consent. Two models provide structure and guidelines for the content and timing of obtaining patients’ consent. The two other models rely on an attitudinal shift in clinicians. They provide ideas for consent by focusing on underlying values, attitudes and meaning associated with the ethical meaning of autonomy.Conclusions: The paper concludes that models of practice that explicitly incorporate the underlying ethical meaning of autonomy as their basis, provide less prescriptive, but more theoretically rich guidance for healthcare communicative practices. (shrink)

Healthcare professionals may confront ethical issues in practice, particularly when their values conflict with that of their patients or clients. This paper explores an ethical case study in which a dietitian who practices Health at Every Size® has an older adult client who wishes to lose weight. The dietitian believes that losing weight is inappropriate for this client. Using a framework for ethical decision making, this article explores the problem or dilemma, identifies the potential issues involved, discusses the relevant ethical (...) codes, laws, and regulations, and explores possible courses of action and their consequences. By exploring an ethical issue that healthcare professionals may encounter in practice, we can gain a deeper understanding of ethical decision making. (shrink)

BackgroundRespect for autonomy is a paramount principle in end-of-life ethics. Nevertheless, empirical studies show that decision-making, exclusively focused on the individual exercise of autonomy fails to align well with patients’ preferences at the end of life. The need for a more contextualized approach that meets real-life complexities experienced in end-of-life practices has been repeatedly advocated. In this regard, the notion of ‘relational autonomy’ may be a suitable alternative approach. Relational autonomy has even been advanced as a foundational notion of palliative (...) care, shared decision-making, and advance-care planning. However, relational autonomy in end-of-life care is far from being clearly conceptualized or practically operationalized.Main bodyHere, we develop a relational account of autonomy in end-of-life care, one based on a dialogue between lived reality and conceptual thinking. We first show that the complexities of autonomy as experienced by patients and caregivers in end-of-life practices are inadequately acknowledged. Second, we critically reflect on how engaging a notion of relational autonomy can be an adequate answer to addressing these complexities. Our proposal brings into dialogue different ethical perspectives and incorporates multidimensional, socially embedded, scalar, and temporal aspects of relational theories of autonomy. We start our reflection with a case in end-of-life care, which we use as an illustration throughout our analysis.ConclusionThis article develops a relational account of autonomy, which responds to major shortcomings uncovered in the mainstream interpretation of this principle and which can be applied to end-of-life care practices. (shrink)

Autonomous decision-making over therapy options is not reducible to the refusal of unwanted medical intervention. This is a myth that has been imported from questionable assumptions in political economy, and is of little benefit to medical practice and the sometimes agonizing decisions which have to be taken by patients and their relatives. An individual's right to therapy abatement can be protected from abuse only in the context of a full understanding of autonomous choice; not merely the right to refuse, but (...) the opportunity to receive assistance and consider alternatives. Limits are also required on the role of the surrogate in the refusal of therapy. Policies endorsing therapy abatement and exercise of the right to forego life-sustaining therapy should carry cast iron guarantees that they will not be disadvantageous to the poor and undereducated members of society. It should also be noted that fears of unlimited life-prolongation have been greatly exaggerated. In an atmosphere of governmental indifference to the plight of the sick, with the notion of welfare tuned to market forces, there is a danger that self-determination can have a restricted meaning; the option of death in the context of an underfunded health service. This may not be the time to campaign for the right to refuse therapy, but rather the time to campaign for improvements to existing therapy. (shrink)

The expansion of the older population suggests that there will be significant numbers in need of care and support in their own home environment. Yet, little is known about the kind of situations professionals are faced with and how they intervene in the living environment of older people. Qualitative data were collected over a period of 1.5 years from a multi-disciplinary community-based geriatric team in the Netherlands, and participant observations carried out. Forty-two cases discussed within the team meetings were analysed. (...) Results demonstrate that providing care to older people is a dynamic process and revolves around various paradoxes as experienced by professionals. This is illustrated by presenting three paradoxes that emerged within the data: respecting autonomy versus preserving safety; the care needs of the care recipients versus the capacity of their informal carers to cope; and holding a formal orientation versus a tailored orientation on tasks. Providing care in the home environment of older people requires from professionals a continuous anticipation of (un)expected evolutions in situations of their care recipients. In order to optimally support older people professionals need ‘professional discretion’. They must be supported to systematically reflect on and legitimize their intervention strategies. (shrink)

It is a common experience among care professionals that persons with dementia often say ‘no’ to conventional caring measures such as taking medication, eating or having a shower. This tendency to say ‘no’ may also concern the use of assistive technologies such as fall detectors, mobile safety alarms, Internet for social contact and robots. This paper provides practical recommendations for care professionals in home health care and social care about how to respond to such resistiveness towards assistive technologies. Apart from (...) the option of accepting the ‘no’, it discusses a number of methods for influencing persons with dementia in order to overcome the ‘no’. These methods range from various non-coercive measures—including nudging—to coercion. It is argued that while conventional caring measures like those mentioned are essential for survival, health or hygiene, assistive technologies are commonly merely potentially beneficial supplements. With this in mind, it is concluded that care professionals should be more restrictive in using methods of influence involving some degree of pressure regarding assistive technologies than regarding conventional caring measures. (shrink)

Respect for autonomy is a key principle in bioethics. However, respecting autonomy in practice is complex because most people define themselves and make decisions influenced by a complex network of social relationships. The extent to which individual autonomy operates for each partner within the context of decision-making within marital or similar relationships is largely unexplored. This paper explores issues related to decision-making by couples for health care and the circumstances under which such a practice should be respected as compatible with (...) autonomous decision-making. We discuss the concept of autonomy as it applies to persons and to actions, human interdependency and gender roles in decision-making, the dynamics and outcomes of couples’ joint decision-making, and the ethics of couples’ joint decision-making. We believe that the extent to which couples’ joint decision-making might be deemed ethically acceptable will vary depending on the context. Given that in many traditional marriages the woman is the less dominant partner, we consider a spectrum of scenarios of couples’ joint decision-making about a woman’s own health care that move from those that are acceptably autonomous to those that are not consistent with respecting the woman’s autonomous decision-making. To the extent that there is evidence that both members of a couple understand a decision, intend it, and that neither completely controls the other, couples’ joint decision-making should be viewed as consistent with the principle of respect for the woman’s autonomy. At the other end of the spectrum are decisions made by the man without the woman’s input, representing domination of one partner by the other. We recommend viewing the dynamics of couples’ joint decision-making as existing on a continuum of degrees of autonomy. This continuum-based perspective implies that couples’ joint decision-making should not be taken at face value but should be assessed against the specific cultural, ethnic, and religious backgrounds and personal circumstances of the individuals in question. (shrink)

This paper challenges the traditional assumption that descriptive and prescriptive sciences are essentially distinct by presenting a study on the implicit normativity of the production and presentation of biomedical scientific facts within evidence-based medicine. This interdisciplinary study serves as an illustration of the potential worth of the concept of implicit normativity for bioethics in general and for integrated empirical ethics research in particular. It demonstrates how both the production and presentation of scientific information in an evidence-based decision-support contain implicit presuppositions (...) and values, which pre-structure the moral environment of the clinical process of decision-making. As a consequence, the evidence-based decision support did not only support the clinical decision-making process; it also transformed it in a morally significant way. This phenomenon undermines the assumption within much of the literature on patient autonomy that information disclosure is a conditional requirement before patient autonomy even starts; patient autonomy is already influenced during the production and presentation of information. These results imply an increased responsibility of those who produce and present evidence-based facts(i.e. scientists in general and physicians in particular). The insights of this study not only involve a different focus on both theory and practice of patient autonomy and informed consent, but they also call for a broader scope of morality than does traditional empirical research in bioethics. The concept of implicit normativity within integrated empirical ethics research calls for a strong cooperation between bioethicists and descriptive scientists, i.e., a cooperation that goes beyond the discipline-specific epistemic values and that takes place during all phases of the research process. (shrink)

Over the course of human life, health care decision‐making is often interdependent. In this article, we use “interdependence” to refer to patients’ engagement of nonclinicians—for example, family members or trusted friends—to reach health care decisions. Interdependence, we suggest, is common for patients in all stages of life, from early childhood to late adulthood. This view contrasts with the common bioethical assumption that medical decisions are either wholly independent or dependent and that independence or dependence is tightly coupled with a person's (...) decision‐making capacity. In this article, we array various approaches to decision‐making along a continuum of interdependence. An appreciation of this continuum can empower patients and elucidate ethical challenges that arise when people transition between different kinds of interdependence across the life span. (shrink)

Background: Autonomy and participation are threatened within the group of older people living in nursing homes. Evidence suggests that healthcare personnel act on behalf of older people but are still excluding them from decision-making in everyday care. Objective: The purpose was to describe registered nurses’ experience of caring for older people in nursing homes to promote autonomy and participation. Research design: A descriptive design with a phenomenological approach was used. Data were collected by semi-structured individual interviews. Analysis was inspired by (...) Giorgi’s method. Participants and research context: A total of 13 registered nurses from 10 nursing homes participated. Ethical considerations: Ethical approval was obtained from the Regional Research Ethics Committee. Informed consent was achieved and confidentiality guaranteed. Findings: The essence of caring for older people in nursing homes to promote autonomy and participation consisted of registered nurses’ awareness of older people’s frailty and the impact of illness to support health and well-being, and awareness of acknowledgement in everyday life and trusting relationships. Paying attention to older people by being open to the persons’ wishes were aspects that relied on registered nurses’ trusting relationships with older people, their relatives and surrounding healthcare personnel. The awareness reflected challenges in caring to promote older people’s right to autonomy and participation in nursing homes. Registered nurses’ strategies, hopes for and/or concerns about development of everyday life in nursing homes were revealed and mirrored their engagement in caring for older people. Discussion and conclusion: Awareness of older people’s frailty in nursing homes and the importance of maintained health and well-being were described as the main source for promoting autonomy and participation. Everyday life and care in nursing homes needs to be addressed from both older people’s and healthcare personnel’s perspectives, to promote autonomy and participation for residents in nursing homes. (shrink)

Despite moves to enhance the autonomy of clients of health care services, the use of a variety of physical restraints on the freedom of movement of frail, elderly patients continues in nursing homes. This paper confronts the use of restraints on two grounds. First, it challenges the assumption that use of restraints is necessary to protect the welfare of frail, elderly patients by drawing on a range of data indicating the limited efficacy of restraints. Secondly, it argues that the duty (...) to respect individual autonomy extends to a duty to respect the autonomy of patients who are elderly, frail and living in nursing homes. (shrink)