BackgroundPatient-centeredness, respect for patient autonomy, and shared decision-making have now made it to center stage in discussions on quality of care. Knowing what actually counts in care and how it should be accomplished from the patients’ and nurses’ perspective seems crucial.AimTo explore how patients and their nurses perceive the importance and enactment of values in their healthcare.Research designAn observational, cross-sectional study using a self-developed questionnaire, consisting of 15 items related to seven values (e.g. uniqueness, autonomy, professionalism, compassion, responsiveness, partnership, and (...) empowerment) as described in the taxonomy of Bastemeijer et al.Participants and research contextThe survey was completed by 384 patients and 81 nurses. Participants were recruited on eight internal medicine wards of a 1000-bed university hospital in Belgium.Ethical considerationsThis study was approved by the ethical committee of the Ghent University Hospital (B670201836799).Findings(1) Patients and nurses prioritize values of care differently; (2) nurses report not being able to enact the values they prioritize in actual practice as much as one would like to; and (3) there is a gap in experienced delivery of a comprehensible explanation of all treatment options, a conversation based on equality, making shared decisions, and being non-judgmental between nurses and patients.DiscussionOur findings challenge nurses’ overemphasis on professional compassion and uniqueness while arguing for increased attention on authentic shared decision-making and empowerment. The first step to a patient-centered culture truly involving patients in their healthcare is communication and information provision, rather than focusing on tangible and normative constructs.ConclusionOur findings revealed differences in prioritization and actual enactment of values in care between patients and nurses. This was especially so for values related to communication, provision of complete unbiased information, and shared decision-making. Nurses should prioritize providing comprehensible information and using conversations based on equality to make decision together with patients. (shrink)

Background Research is fundamental to improving the quality of health care. The need for regulation of research is clear. However, the bureaucratic complexity of research governance has raised concerns that the regulatory mechanisms intended to protect participants now threaten to undermine or stifle the research enterprise, especially as this relates to sensitive topics and hard to reach groups. Discussion Much criticism of research governance has focused on long delays in obtaining ethical approvals, restrictions imposed on study conduct, and the inappropriateness (...) of evaluating qualitative studies within the methodological and risk assessment frameworks applied to biomedical and clinical research. Less attention has been given to the different epistemologies underlying biomedical and qualitative investigation. The bioethical framework underpinning current regulatory structures is fundamentally at odds with the practice of emergent, negotiated micro-ethics required in qualitative research. The complex and shifting nature of real world settings delivers unanticipated ethical issues and (occasionally) genuine dilemmas which go beyond easy or formulaic ‘procedural’ resolution. This is not to say that qualitative studies are ‘unethical’ but that their ethical nature can only be safeguarded through the practice of ‘micro-ethics’ based on the judgement and integrity of researchers in the field. Summary This paper considers the implications of contrasting ethical paradigms for the conduct of qualitative research and the value of ‘empirical ethics’ as a means of liberating qualitative (and other) research from an outmoded and unduly restrictive research governance framework based on abstract prinicipalism, divorced from real world contexts and values. (shrink)

Respect for patient autonomy is a central principle of medical ethics. However, there are important unresolved questions about the characteristics of an autonomous decision, and whether some autonomous preferences should be subject to more scrutiny than others. In this paper, we consider whether _inappropriately adaptive preferences_—preferences that are based on and that may perpetuate social injustice—should be categorised as autonomous in a way that gives them normative authority. Some philosophers have argued that inappropriately adaptive preferences do not have normative authority, (...) because they are only a reflection of a person’s social context and not of their true self. Under this view, medical professionals who refuse to carry out actions which are based on inappropriately adaptive preferences are not in fact violating their patient’s autonomy. However, we argue that it is very difficult to articulate a systematic and principled distinction between normal autonomous preferences and inappropriately adaptive preferences, especially if this distinction needs to be useful for clinicians in real-life situations. This makes it difficult to argue that inappropriately adaptive preferences are straightforwardly non-autonomous. Given this problem, we argue that there are significant theoretical issues with contemporary understandings of autonomy in bioethics. We discuss what this might mean for the practice of medicine and for medical ethics education. (shrink)

Patients’ trust in their physicians improves their health outcomes because of better compliance, more disclosure, stronger placebo effect, and more physicians’ trustworthy behaviors. Patients’ autonomy may also impact on health outcomes and is increasingly being emphasized in health care. However, despite the critical role of trust and autonomy, patients that naïvely trust their physicians may become overly dependent and lack the motivation to participate in medical care. In this article, we argue that increased trust does not necessarily imply decreased autonomy. (...) Furthermore, patients with high levels of trust and autonomy preferences are most likely to have the best health outcomes. We propose a framework for understanding simultaneous trust and autonomy preferences and for recognizing their interactive effects on health outcomes in the dynamic medical encounter. This framework argues that policy makers and health care providers should make efforts to foster not only patients’ trust but also their preferences for autonomy and thus gain the best position for achieving health-related goals. (shrink)

As a gynecologic surgeon with a focus on infertility, I frequently hold complex discussions with patients, exploring with them the risks and benefits of surgical options. In the past, we physicians may have expected our patients to simply defer to our expertise and choose from the options we presented. In our contemporary era, however, patients frequently request options not favored by their physicians and even some they've found themselves online. In reproductive endocrinology and infertility, the range of options that may (...) be offered or that patients may themselves seek out is continuously widening. Physicians certainly seek to find the option that will result in the best outcome for their patients, but the information to guide us in achieving the best outcome can be vague or conflicting. Add to this the financial and emotional pressures bearing on patients seeking assisted reproduction. In this essay, I explore the extent to which clinicians in reproductive medicine should follow patient requests with which they disagree or instead try to persuade the patient to do something else or simply refuse outright to meet the request. And if persuasion is to be used, what would be legitimate methods? Clearly, coercion is unacceptable, but the line between persuasion and coercion can be elusive. At what point can or should clinicians resist such requests—and to what degree? (shrink)

Respect for autonomy is a central value in reproductive ethics, but it can be a challenge to fulfill and is sometimes an outright puzzle to understand. If a woman requests the transfer of two, three, or four embryos during fertility treatment, is that request truly autonomous, and do clinicians disrespect her if they question that decision or refuse to carry it out? Add a commitment to justice to the mix, and the challenge can become more complex still. Is it unfair (...) for insurance policies to exclude from coverage the costs of giving fertility to those who lack it or restoring fertility in those who have lost it? What does “just reproduction” look like in the face of multifarious understandings of both justice and autonomy and in light of increasingly complex and costly reproductive technologies? In today's dialogue about reproduction, medicine, and ethics in the United States, old ethical issues—such as whether women ought to be allowed to access pregnancy termination—are more contested than they have been in decades, while new technologies—like those used to edit the genes of human embryos—suggest that our species could face unprecedented questions about who should exist. As we considered the discussions accompanying these issues and contemplated a special report responding to them, we found ourselves consistently circling back to two ethical commitments: respect for autonomy and the pursuit of justice. As one of the nine essays in this collection asks, why should certain women receive help to establish a pregnancy while others are thrown in jail when they miscarry or their child is stillborn? Respect for autonomy is required where individuals have the ability to make fully informed and voluntary choices. Yet does respecting autonomy require acceding to all the choices of patients or consumers of medical care? We consider these and related questions in this special report from the Hastings Center Report. (shrink)

Through its adoption of the biomedical model of disease which promotes medical individualism and its reliance on the individual-based anthropology, mainstream bioethics has predominantly focused on respect for autonomy in the clinical setting and respect for person in the research site, emphasizing self-determination and freedom of choice. However, the emphasis on the individual has often led to moral vacuum, exaggeration of human agency, and a thin (liberal?) conception of justice. Applied to resource-poor countries and communities within developed countries, autonomy-based bioethics (...) fails to address the root causes of diseases and public health crises with which individuals or communities are confronted. A sociological explanation of disease causation is needed to broaden principles of biomedical ethics and provides a renewed understanding of disease, freedom, medical practice, patient-physician relationship, risk and benefit of research and treatment, research priorities, and health policy. (shrink)

Next SectionFollowing the influential Gifford and Reith lectures by Onora O’Neill, this paper explores further the paradigm of individual autonomy which has been so dominant in bioethics until recently and concurs that it is an aberrant application and that conceptions of individual autonomy cannot provide a sufficient and convincing starting point for ethics within medical practice. We suggest that revision of the operational definition of patient autonomy is required for the twenty first century. We follow O’Neill in recommending a principled (...) version of patient autonomy, which for us involves the provision of sufficient and understandable information and space for patients, who have the capacity to make a settled choice about medical interventions on themselves, to do so responsibly in a manner considerate to others. We test it against the patient–doctor relationship in which each fully respects the autonomy of the other based on an unspoken covenant and bilateral trust between the doctor and patient. Indeed we consider that the dominance of the individual autonomy paradigm harmed that relationship. Although it seems to eliminate any residue of medical paternalism we suggest that it has tended to replace it with an equally (or possibly even more) unacceptable bioethical paternalism. In addition it may, for example, lead some doctors to consider mistakenly that unthinking acquiescence to a requested intervention against their clinical judgement is honouring “patient autonomy” when it is, in fact, abrogation of their duty as doctors. (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)

This study explored patients' experiences of participation and non-participation in their health care. A questionnaire-based survey method was used. Content analysis showed that conditions for patient participation occurred when information was provided not by using standard procedures but based on individual needs and accompanied by explanations, when the patient was regarded as an individual, when the patient's knowledge was recognized by staff, and when the patient made decisions based on knowledge and needs, or performed self-care. Thus, to provide conditions for (...) true patient participation, professionals need to recognize each patient's unique knowledge and respect the individual's description of his or her situation rather than just inviting the person to participate in decision making. (shrink)

There has been a significant increase in the use of radiological services in the past 30 years. There are many reasons for this, but one has received little attention: the increased role of patient autonomy in healthcare. Patients demand x rays, CT scans, MRI, and positron emission tomography scans. The key question in this article is how a moral principle, such as respect for patient autonomy, can influence the extension of radiological services. A literature review reveals how patient autonomy is (...) acknowledged in radiology, and how it is used both to explain and to justify the increase in radiological examinations. Furthermore, it also shows how the premises favouring patients’ exercise of their autonomy are not always present, which makes patient autonomy subject to adverse side effects and even abuse. Patient autonomy can be used to reduce the professionals’ responsibility for radiological examinations , to increase the popularity of the profession , to increase the income of the professionals or their institutions, and to promote professional activity. Patient autonomy intended to reduce paternalism, to legitimise otherwise morally unjustifiable actions , and to protect patients, can easily be used as a moral means for opposite ends. These adverse effects are not peculiar to radiology. However, they emerge particularly clearly in explanations and justifications of the substantial increase in radiological services, as well as in debates on overuse of radiological services. (shrink)

According to the doctrine of informed consent medical procedures are morally permissible when a patient has consented to the treatment. Problematically it is possible for a patient to consent to or refuse treatment which consequently leads to a decline in her best interests. Standardly, such conflicts are resolved by prioritising the doctrine of informed consent above the requirement that the medical practitioner acts in accordance with the duty of care. This means that patient free choice is respected regardless as to (...) whether her choice leads to a decline in her best interests, since to disrespect patient choice would be an instance of ‘unwarranted’ paternalism. This thesis defends the claim that in cases where patient consent comes into conflict with her best interests, paternalistic interference is in fact justified. The ambition of the thesis is thus twofold: in the first place I argue that the doctrine of informed consent cannot be used as an ethical guarantor for medical decision making. Secondly I will conclude that hard paternalism is justified in medical practice, thereby calling for a reversal of the prioritisation of informed consent procedures over the medical practitioner’s duty of care. (shrink)