Many critics of medicalization express concern that the process privileges individualised, biologically grounded interpretations of medicalized phenomena, inhibiting understanding and communication of aspects of those phenomena that are less relevant to their biomedical modelling. I suggest that this line of critique views medicalization as a hermeneutical injustice—a form of epistemic injustice that prevents people having the hermeneutical resources available to interpret and communicate significant areas of their experience. Interpreting the critiques in this fashion shows they frequently fail because they: neglect (...) the ways in which medicalization may not obscure, but rather illuminate, individuals’ experiences; and neglect the testimony of those experiencing first-hand medicalized problems, thus may be guilty of perpetrating testimonial injustice. However, I suggest that such arguments are valuable insofar as they highlight the unwarranted epistemic privilege frequently afforded to medical institutions and medicalized models of phenomena, and a consequent need for greater epistemic humility on the part of health workers and researchers. (shrink)

Recent criticism of the role of respect for autonomy in bioethics has focused on that principle's status as ‘dogma’ or ‘ideology’. I suggest that lying beneath many applications of respect for autonomy in medical ethics are some influential dogmas — propositions accepted, not as explicit premises or as a consequence of reasoned argument, but simply because moral problems are so frequently framed in such terms. Furthermore, I will argue that rejecting these dogmas is vital to secure and protect an autonomy (...) worthy of respect. The concept of autonomy that is widely applied in clinical ethics emphasises decision-making competence, at the expense of considering the authenticity of those decisions. Respect for such autonomy is interpreted in largely synchronic and individual terms — concerned with the isolated decisions of individual agents — and thus neglects the diachronic and social dimensions of many moral dilemmas arising in the health care context. I will examine how these unwritten rules lead to an impoverished understanding of respect and a systematic neglect in bioethics of certain kinds of ethical consideration, and draw on insights from feminist and communitarian work on autonomy to sketch an alternative approach to understanding respect, modelled on the norms of respectful conversation — a respect that is firstly concerned with engaging with the another as a potential giver and bearer or reasons, and working with them to promote both individual and social flourishing. (shrink)

The notion of autonomy commonly employed in medical ethics literature and practices is inadequate on three fronts: it fails to properly identify nonautonomous actions and choices, it gives a false account of which features of actions and choices makes them autonomous or nonautonomous, and it provides no grounds for the moral requirement to respect autonomy. In this paper I offer a more adequate framework for how to think about autonomy, but this framework does not lend itself to the kinds of (...) practical application assumed in medical ethics. A general problem then arises: the notion of autonomy used in medical ethics is conceptually inadequate, but conceptually adequate notions of autonomy do not have the practical applications that are the central concern of medical ethics. Thus, a revision both of the view of autonomy and the practice of “respect for autonomy” are in order. (shrink)

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)

This paper argues that the concept of paternalism is currently overextended to include a variety of actions that, while resembling paternalistic actions, are importantly different. I use the example of Japanese physicians’ non-disclosures of cancer diagnoses directly to patients, arguing that the concept of maternalism better captures these actions. To act paternalistically is to substitute one's own judgement for that of another person and decide in place of that person for his/her best interest. By contrast, to act maternalistically is to (...) decide for another person based on a reasonable understanding of that person's own preferences. The concept of maternalism allows for a more thorough assessment of the moral justification of these types of actions. I conclude that it is possible, at least in principle, to justify Japanese physicians’ non-disclosures, and that this justification must be based on an understanding of these actions as maternalistic. (shrink)

Specifying the moral demands of respect for the autonomy of people with dementia (PWD) in nursing homes (NHs) remains a challenging conceptual task. These challenges arise primarily because received notions of autonomous decision-making and informed consent do not straightforwardly apply to PWD in NHs. In this paper, I investigate whether, and to what extent, the influential account of autonomous decision-making and informed consent proposed by Beauchamp and Childress has applicability and relevance to PWD in NHs. Despite its otherwise practical orientation (...) and suitability for acute care settings, I identify three problems with this account when applied to PWD in NHs. These problems include (1) intentionality as an all-or-nothing condition of autonomous decision-making, (2) construing consent as one-off authorization, and (3) unresolved ambiguities around the primacy of precedent autonomy over best interest considerations. To address these problems, I propose and defend a number of revisions to Beauchamp and Childress’s account. First, I suggest that we consider intentionality as a non-binary criterion of autonomous decision-making. Second, I argue for a model of process consent to overcome the moral inadequacy of construing consent as one-off authorization in NHs. And, to overcome the third problem, I suggest accounting for both precedent and extant autonomy of PWD, considering mandates of precedent autonomy not as prescriptive but as informative, and drawing a less rigid distinction between autonomy considerations and best interest judgements. I conclude that this revised version of Beauchamp and Childress’s account fares better than the original version in capturing relevant autonomy considerations to care for PWD in NHs. (shrink)

This article discusses the response of our ethics consultation service to an exceptional request by a patient to have his implantable cardioverter defibrillator removed. Despite assurances that the device had saved his life on at least two occasions, and cautions that without it he would almost certainly suffer a potentially lethal cardiac event within 2 years, the patient would not be swayed. Although the patient was judged to be competent, our protracted consultation process lasted more than 8 months as we (...) consulted, argued with, and otherwise cajoled him to change his mind, all to no avail. Justifying our at times aggressive paternalistic intervention helped us to reflect on the nature of autonomy and the dynamics of the legal, moral, and personal relationships in the clinical decision-making process. (shrink)

This article argues that supported decision making is ideal for people with dynamic cognitive and functional impairments that place them at the margins of autonomy. First, we argue that guardianship and similar surrogate decision-making frameworks may be inappropriate for people with dynamic impairments. Second, we provide a conceptual foundation for supported decision making for individuals with dynamic impairments, which integrates the social model of disability with relational accounts of autonomy. Third, we propose a three-step model that specifies the necessary conditions (...) of supported decision making: identifying domains for support; identifying kinds of supports; and reaching a mutually acceptable and formal agreement. Finally, we identify a series of challenges for supported decision making, provide preliminary responses, and highlight avenues for future bioethics research. (shrink)

Clinical evidence suggests that many patients undergo surgery that they would decline if fully informed. Failure to communicate the relevant risks, benefits, and alternatives of a procedure violates medical ethics and wastes medical resources. Integrating shared decision-making, a method of communication between provider and patient, into medical decisions can satisfy physicians' ethical obligations and reduce unwanted procedures. This article proposes a three-step process for implementing a nationwide practice of shared decision-making: create model integration programs; provide legal incentives to ease the (...) transition; and incorporate shared decision-making into medical necessity determinations. (shrink)

Medical practice should evolve alongside medical ethics. As our understanding of the ethical implications of physician-patient interactions becomes more nuanced, physicians should integrate those lessons into practice. As early as the 1930s, epidemiological studies began to identify that the rates of medical procedures varied significantly along geographic and socioeconomic lines. Dr. J. Alison Glover recognized that tonsillectomy rates in school children in certain school districts in England and Wales were in some cases eight times the rates of children in other (...) districts, with the only significant predictive factors being the current chief medical officer in the area and the socioeconomic well-being of the child's parents. Unfortunately, Dr. Glover's work revealed that the increase in tonsillectomies did not improve the health of adolescent patients and appeared to be performed “as a routine prophylactic ritual for no particular reason and with no particular result.”. (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)

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)

This paper raises three concerns regarding self-ownership rhetoric to describe autonomy within healthcare in general and reproductive justice in specific. First, private property and the notion of “ownership” embedded in “self-ownership,” rely on and replicate historical injustices related to the initial acquisition of property. Second, not all individuals are recognized as selves with equal access to self-ownership. Third, self-ownership only justifies negative liberties. To fully protect healthcare access and reproductive care in specific, we must also be able to make claims (...) on others to respect, protect, and fulfill our positive rights. As much as nondomination remains an urgent demand for reproductive rights, it does not go far enough to ensure reproductive justice. (shrink)

This paper contributes to the growing line of thought in bioethics that respect for autonomy should not be equated to the facilitation of individualistic self determination through standard requirements of informed consent in all healthcare contexts. The paper describes how in the context of donation for living related liver transplantation (LRLT) meaningful, responsible decision making is often embedded within family processes and its negotiation. We suggest that good donor risk communication in families promote “conscientious autonomy” and “reflective trust”. From this, (...) the paper offers the suggestion that transplant teams and other relevant professionals have to broaden their role and responsibility for risk communication beyond proper disclosure by addressing the impact of varied psychosocial conditions on risk interpretation and assessment for potential donors and family stakeholders. In conclusion, we suggest further research questions on how professional responsibility and role-taking in risk communication should be morally understood. (shrink)

The unfortunately vast history of paternalism in both medicine and clinical research has resulted in perpetually increasing respect for patient autonomy and free choice in Western health care systems. Beginning with the negative right to informed consent, the principle of respect for autonomy has for many patients evolved into a positive right to request treatments and expect accommodation. This evolution of patient autonomy has mirrored a more general social attitude of market liberalism where increasing numbers of patients have come to (...) embody the role of the “consumer.” This paper explores this transformation and critiques the current way in which respect for patient autonomy is put into practice. Ultimately, this paper concludes that the consumer view of patient autonomy is dysfunctional. Moreover, this paper argues that, based on the inherent goals of medicine, some form of paternalism is required in any meaningfully therapeutic relationship. (shrink)

Self‐care, or self‐management, is presented in healthcare policy as a precursor to patient empowerment and improved patient outcomes. Alternatively, critiques of the self‐care agenda suggest that it represents an over‐reliance on individual autonomy and responsibility, without adequate support, whereby ‘self‐care’ is potentially unachievable and becomes ‘care left undone’. In this sense, self‐care contributes to a blame culture where ill‐health is attributed to personal behaviours or lack thereof. Furthermore, self‐care may represent a covert form of rationing, as the fiscal means to (...) enable effective self‐care and supplement, or replace, self‐care capacities, is not provided. This paper explores these arguments through a contemporary ethical analysis of the self‐care agenda. The terms self‐care and self‐management are used interchangeably throughout whereby self‐management is understood as a point in the wider self‐care continuum. (shrink)

The global increase in patients with chronic conditions has led to increased interest in ethical issues regarding such conditions. A basic biomedical principle—respect for autonomy—is being reexamined more critically in its clinical implications. New accounts of this basic principle are being proposed. While new accounts of respect for autonomy do underpin the design of many public programs and policies worldwide, addressing both chronic disease management and health promotion, the risk of applying such new accounts to clinical setting remain understudied. However, (...) the application of new accounts of respect for autonomy to clinical settings could support disrespectful attitudes toward or undue interference with patients with chronic conditions. Reconsidering autonomy and respect using Kantian accounts, this paper proposes respect for persons as an alternative basic bioethical principle to respect for autonomy. Unlike the principle of respect for persons in the Belmont Report, our principle involves respecting any patient’s decisions, behaviors, emotions, or life-style regardless of his or her “autonomous” capabilities. Thus, attitudes toward patients should be no different irrespective of the assessment of their decisional or executive capabilities. (shrink)

Person-centered care offers a promising way to manage clinicians’ conscientious objection to providing services they consider morally wrong. Health care centered on persons, rather than patients, recognizes clinicians and patients on the same stratum. The moral interests of clinicians, as persons, thus warrant as much consideration as those of other persons, including patients. Interconnected moral interests of clinicians, patients, and society construct the clinician as a socially embedded and integrated self, transcending the simplistic duality of private conscience versus public role (...) expectations. In this milieu of blurred boundaries, person-centered care offers a constructive way to accommodate conscientious objection by clinicians. The constitutionally social nature of clinicians commits and enables them, through care mechanisms such as self-care, to optimize the quality of health care and protect the welfare of patients. To advance these conditions, it is recommended that the medical profession develop a person-centered culture of care, along with clinician virtues and skills for person-centered communication. (shrink)

Approaches to supporting autonomy in medicine need to be able to support complex and sensitive decision-making, incorporating reflection on the patient's values and goals. This should involve deliberation in partnership between physician and patient, allowing the patient to take responsibility for her decision. Nowhere is this truer than in decisions around pregnancy and Caesarean section where maternal autonomy can seem to directly conflict with foetal interests. Medical and societal expectations and norms such as the expectations of a ‘mother’, constraints of (...) making decisions in an emergency, and the role of technology in viewing the foetus as a separate patient and surgery as a guarantor of results can all act to limit a woman's autonomy. In considering decisions about Caesarean section, maternal interests in bodily integrity can be dismissed as being less important than the foetus's own interests and the mother's duties to it, despite the inherent risks and impacts of such a major surgical procedure... (shrink)

Next SectionThe principle of respect for autonomy has shaped much of the bioethics' discourse over the last 50 years, and is now most commonly used in the meaning of respecting autonomous choice. This is probably related to the influential concept of informed consent, which originated in research ethics and was soon also applied to the field of clinical medicine. But while available choices in medical research are well defined, this is rarely the case in healthcare. Consideration of ordinary medical practice (...) reveals that the focus on patient choice does not properly grasp the moral aspects involved in healthcare. Medical decisions are often portrayed as if doctors and patients in confidence confront specific decisions about examinations or treatment, yet the reality often involves many different participants, with decisions being made over time and space. Indeed, most of the decisions are never even presented to patients, as it would be unethical to suggest something that is not medically justifiable. The options patients do confront are somewhat arbitrarily constructed within the narrow framework of both what is deemed to be medically appropriate and how the healthcare system is organised practically. While the autonomy discourse has proven valuable, a failure to distinguish between the fields of medical research and clinical medicine has generated a focus on patient choice that does not reflect what is really at stake in healthcare settings. This is alarming, because the current discourse misrepresents medical practice in a way that actually contributes to bioethical self-delusion. (shrink)

In this project, I argue that the conventional view of personal autonomy that is operational in contemporary American culture, bioethics and medical practice places undue emphasis on individualism and a limited range of personal qualities and attributes (such as self-sufficiency). Instead, I argue in favor of a relational approach to autonomy which recognizes that each person that exists has certain minimal connections or relations to others, and these connections/relations are identity-forming. Unfortunately, current medical practices have tended to overemphasize individuality and (...) choice (consistent with the conventional view) while minimizing or excluding these relational aspects. As a result, informed consent and patient choice have taken the place of a more robust, relational sense of autonomy in these contexts. But this approach fails to appreciate the ways that illness, uncertainty, and suffering may threaten identity and make it more difficult to meaningfully exercise autonomy—especially when construed in such narrow terms. Through an exploration of the nature of suffering and its effects on the person, I argue that to effectively treat ailments and alleviate suffering, patients must be cared for in ways that respect and restore identity, which also promotes autonomy. This kind of respect derives in part from acknowledging and nurturing relationality, especially in medical decision-making contexts. (shrink)

We argue that while digital health technologies (e.g. artificial intelligence, smartphones, and virtual reality) present significant opportunities for improving the delivery of healthcare, key concepts that are used to evaluate and understand their impact can obscure significant ethical issues related to patient engagement and experience. Specifically, we focus on the concept of empowerment and ask whether it is adequate for addressing some significant ethical concerns that relate to digital health technologies for mental healthcare. We frame these concerns using five key (...) ethical principles for AI ethics (i.e. autonomy, beneficence, non-maleficence, justice, and explicability), which have their roots in the bioethical literature, in order to critically evaluate the role that digital health technologies will have in the future of digital healthcare. (shrink)

Severe brain injury is a leading cause of death and disability. Following severe brain injury diagnosis is difficult and errors frequently occur. Recent findings in clinical neuroscience may offer a solution. Neuroimaging has been used to detect preserved cognitive function and awareness in some patients clinically diagnosed as being in a vegetative state. Remarkably, neuroimaging has also been used to communicate with some vegetative patients through a series of yes/no questions. Some have speculated that, one day, this method may allow (...) severely brain-injured patients to make medical decisions. Yet, skepticism is rife, due in part to the inherent difficulty of assessing decision-making capacity through neuroimaging communication. In this thesis, I provide the first systematic analysis of this problem. I present and defend a strategy for assessing decision-making capacity in brain-injured patients who can only communicate through neuroimaging. (shrink)