In recent years there has been an explosion of interest in Artificial Intelligence (AI) both in health care and academic philosophy. This has been due mainly to the rise of effective machine learning and deep learning algorithms, together with increases in data collection and processing power, which have made rapid progress in many areas. However, use of this technology has brought with it philosophical issues and practical problems, in particular, epistemic and ethical. In this paper the authors, with backgrounds in (...) philosophy, maternity care practice and clinical research, draw upon and extend a recent framework for shared decision-making (SDM) that identified a duty of care to the client's knowledge as a necessary condition for SDM. This duty entails the responsibility to acknowledge and overcome epistemic defeaters. This framework is applied to the use of AI in maternity care, in particular, the use of machine learning and deep learning technology to attempt to enhance electronic fetal monitoring (EFM). In doing so, various sub-kinds of epistemic defeater, namely, transparent, opaque, underdetermined, and inherited defeaters are taxonomized and discussed. The authors argue that, although effective current or future AI-enhanced EFM may impose an epistemic obligation on the part of clinicians to rely on such systems' predictions or diagnoses as input to SDM, such obligations may be overridden by inherited defeaters, caused by a form of algorithmic bias. The existence of inherited defeaters implies that the duty of care to the client's knowledge extends to any situation in which a clinician (or anyone else) is involved in producing training data for a system that will be used in SDM. Any future AI must be capable of assessing women individually, taking into account a wide range of factors including women's preferences, to provide a holistic range of evidence for clinical decision-making. (shrink)

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)

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)

According to many of its proponents, shared decision making ("SDM") is the right way to interpret the clinician-patient relationship because it respects patient autonomy in decision-making contexts. In particular, medical ethicists have claimed that SDM respects a patient's relational autonomy understood as a capacity that depends upon, and can only be sustained by, interpersonal relationships as well as broader health care and social conditions. This paper challenges that claim. By considering two primary approaches to relational (...) autonomy, this paper argues that standard accounts of SDM actually undermine patient autonomy. It also provides an overview of the obligations generated by the principle of respect for relational autonomy that have not been captured in standard accounts of SDM and which are necessary to ensure consistency between clinical practice and respect for patient autonomy. (shrink)

In recent years the formerly quite strong interest in patient compliance has been questioned for being too paternalistic and oriented towards overly narrow biomedical goals as the basis for treatment recommendations. In line with this there has been a shift towards using the notion of adherence to signal an increased weight for patients’ preferences and autonomy in decision making around treatments. This ‘adherence-paradigm’ thus encompasses shared decision-making as an ideal and patient perspective and autonomy as (...) guiding goals of care. What this implies in terms of the importance that we have reason to attach to (non-)adherence and how has, however, not been explained. In this article, we explore the relationship between different forms of shared decision-making, patient autonomy and adherence. Distinguishing between dynamically and statically framed adherence we show how the version of shared decision-making advocated will have consequences for whether one should be interested in a dynamically or statically framed adherence and in what way patient adherence should be assessed. In contrast to the former compliance paradigm (where non-compliance was necessarily seen as a problem), using observations about (non-)adherence to assess the success of health care decision making and professional-patient interaction turns out to be a much less straightforward matter. (shrink)

Shared decision-making has become a new focus of health policy. Though its core elements are largely agreed upon, there is little consensus regarding which outcomes to prioritize for policy-mandated shared decision-making.

Shared decision-making involves health professionals and patients/clients working together to achieve true person-centred health care. However, this goal is infrequently realized, and most barriers are unknown. Discussion between philosophers, clinicians, and researchers can assist in confronting the epistemic and moral basis of health care, with benefits to all. The aim of this paper is to describe what shared decision-making is, discuss its necessary conditions, and develop a definition that can be used in practice to (...) support excellence in maternity care. Discussion between the authors, with backgrounds in philosophy, clinical maternity care, health care management, and maternity care research, assisted the team to confront established norms in maternity care and challenge the epistemic and moral basis of decision-making for caesarean section. The team concluded that shared decision-making must start in pregnancy and continue throughout labour and birth, with equality in discourse facilitated by the clinician. Clinicians have a duty of care for the adequacy of women's knowledge, which can only be fulfilled when relevant knowledge is offered freely and when personal beliefs and biases that may impinge on decision-making (defeaters) are disclosed. Informed consent is not shared decision-making. Key barriers include existing cultural norms of “the doctor knows best” and “patient acquiescence” that prevent defeaters being acknowledged and discussed and can lead to legal challenges, overuse of medical intervention and, in some areas, obstetric violence. Shared decision-making in maternity care can thus be defined as an enquiry by clinician and expectant woman aimed at deciding upon a course of care or none, which takes the form of a dialogue within which the clinician fulfils their duty of care to the client's knowledge by making available their complete knowledge (based on all types of evidence) and expertise, including an exposition of any relevant and recognized potential defeaters. Research to develop measurement tools is required. (shrink)

Much discussion of decision-making processes in medicine has been patient-centred. It has been assumed that there is, most often, one patient. Less attention has been given to shared decision-making processes where two or more patients are involved. This article aims to contribute to this special area. What conditions need to be met if decision-making can be said to be shared? What is a shared decision-making process and what is a (...) shared autonomous decision-making process? Why make the distinction? Examples are drawn from the area of new reproductive medicine and clinical genetics. Possible gender-differences in shared decision-making are discussed. (shrink)

Shared decision making (SDM) is the state of the art for clinicians’ communication with patients and surrogate decision makers. SDM involves give and take, in which all parties interact to maximize the autonomy of patients. In this article I summarize the core steps of SDM and explore ways to use it to benefit patients to the greatest extent. I review three articles included in this issue of The Journal of Clinical Ethics that highlight additional approaches we (...) can use to help patients and parents to see what may be in their own or their child’s best interest. I describe how these approaches can be used in most other medical fields. I explore ways to share information with patients that are outside the usual scope of SDM. Finally, I discuss how we might look, together with patients, at what all parties are feeling before we begin the process of SDM. (shrink)

A closer look at the lived illness experiences of medical professionals themselves shows that shared decision making is in need of a logic of care. This paper underlines that medical decision making inevitably takes place in a messy and uncertain context in which sharing responsibilities may impose a considerable burden on patients. A better understanding of patients’ lived experiences enables healthcare professionals to attune to what individual patients deem important in their lives. This will contribute (...) to making medical decisions in a good and caring manner, taking into account the lived experience of being ill. (shrink)

Person centered care (PCC) invites ideas of shared responsibility as a direct result of its shared decision making (SDM) process. The intersection of PCC and psychiatric contexts brings about what I refer to as _the responsibility problem_, which seemingly arises when SDM is applied in psychiatric settings due to (1) patients’ potentially diminished capacities for responsibility, (2) tension prompted by professional reasons for and against sharing responsibility with patients, as well as (3) the responsibility/blame dilemma. This (...) paper aims to do away with the responsibility problem through arguing for a functional approach to mental illness, a blameless responsibility ascription to the person with mental illness, as well as a nuanced understanding of SDM as part of an emancipation-oriented PCC model. (shrink)

This paper explores the practical consequences that Enlightenment ideals had on morality as it applies to clinical practice, using Alisdair MacIntyre's conceptualization and critique of the Enlightenment as its reference point. Taking the perspective of a practicing clinician, I critically examine the historical origins of ideas that made shared decision making (SDM) a necessary and ideal model of clinician-patient relationship. I then build on MacIntyre's critique of Enlightenment thought and examine its implications for conceptions of shared (...) decision-making that use an Enlightenment justification, as well as examining contemporary threats to SDM that the Enlightenment made possible. I conclude by offering an alternative framing of SDM that fits with the clinician's duty to act on behalf of and along with patients but that avoids the tenuous Enlightenment assumptions that MacIntyre's work so vocally critiques. (shrink)

There are some paradoxes in the way doctors and patients make medical decisions today. Today's patients are more empowered than were patients in the past. They have the right to see their medical records. The law requires doctors to obtain their informed consent for treatment. Patients are told about the options for treatment and the risks and benefits of each option. Their values and preferences are elucidated in order to guide the treatments that are provided.

Volume 20, Issue 6, June 2020, Page 30-32.

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)

Zusammenfassung Behandlungsentscheidungen bei Frühgeburten an der Grenze der Lebensfähigkeit stellen eine große Herausforderung dar. In der Neonatologie hat sich das Konzept einer prognostischen Grauzone etabliert, die als ein Grenzbereich verstanden wird, in dem sich aus medizinischer Sicht die Nutzen-Risiko-Abwägung aufgrund der unsicheren Prognose sehr schwierig gestaltet und sich aus ethischer Sicht sowohl eine kurative als auch eine palliative Versorgung prinzipiell rechtfertigen lassen. Innerhalb der Grauzone wird zumeist eine gemeinsame Entscheidungsfindung mit den Eltern in Form eines „shared-decision making“ (...) (SDM) favorisiert, die sich an dem besten Interesse des Neugeborenen orientieren soll. Allerdings findet sich kein Konsens dazu, wie diese Anforderungen umzusetzen sind. Im vorliegenden Beitrag werden unter Einbeziehung der empirischen Studienlage ethische Anforderungen an die Umsetzung des SDM formuliert. Es wird gezeigt, dass Eltern bzw. Schwangere unterschiedliche Präferenzen hinsichtlich der Art ihrer Einbindung haben. Hieraus ergibt sich aus ethischer Sicht die Anforderung, im Rahmen des SDM gemeinsam herauszuarbeiten, welche Rolle sie bei der Entscheidungsfindung einnehmen wollen und welche Präferenzen und Werte für sie bei der Therapieentscheidung von Relevanz sind. Zudem wird in unserer Untersuchung auf die Frage eingegangen, inwiefern die zu erwartende Lebensqualität der Kinder in die Bestimmung des besten Interesses der Neugeborenen einbezogen werden kann. Es wird gezeigt, dass in der prognostischen Grauzone neben den Präferenzen der Eltern bzw. Schwangeren gegenwärtig kaum Kriterien zur inhaltlichen Bestimmung des besten Interesses des Neugeborenen zur Verfügung stehen – ein wesentlicher Grund, der aus ethischer Sicht für die Implementierung des skizzierten Modells des SDM spricht. (shrink)

In recent years, shared decision-making has become entrenched in the medical literature and the law as the ideal method for involving patients in decisions related to their health care. Shared decision-making represents a compromise between the opposed extremes of paternalistic interactions that limit patients’ control of their health care, and “informed choice” interactions that require physicians to provide technical expertise only, leaving patients to make all treatment decisions on their own. An implicit goal of (...) shared decision-making is to improve medical care by promoting joint participation of patients and physicians in clinical consultations. The model of shared decision-making may, however, inadequately address the health care needs of lower literate patients, a significant portion of the general population.As shared decision-making is widely held as a clinical ideal, we highlight the difficulties that physicians might have in implementing shared decision-making with lower literate patients. (shrink)

In recent years, shared decision-making has become entrenched in the medical literature and the law as the ideal method for involving patients in decisions related to their health care. Shared decision-making represents a compromise between the opposed extremes of paternalistic interactions that limit patients’ control of their health care, and “informed choice” interactions that require physicians to provide technical expertise only, leaving patients to make all treatment decisions on their own. An implicit goal of (...) shared decision-making is to improve medical care by promoting joint participation of patients and physicians in clinical consultations. The model of shared decision-making may, however, inadequately address the health care needs of lower literate patients, a significant portion of the general population.As shared decision-making is widely held as a clinical ideal, we highlight the difficulties that physicians might have in implementing shared decision-making with lower literate patients. (shrink)

The focus of this paper is the moral and scientific value of ‘expertise by experience’, that is, knowledge based on personal experience of ill mental health as a form of expertise in mental health research. In contrast to individualistic theories of personal autonomy and the first-person in bioethics, my account of shared decision-making is focussed on how a relational approach to the ‘person’ and ‘patient values’ can throw new light on our understanding of ‘voice’ in mental health (...) research. The mistake, I argue, is to think that a commitment to listening to the patient voice in the process of perspective taking implies a threat to ‘objectivity’ in clinical practice and the very concept of evidence in the philosophy of science more generally. Instead, I use Helen Longino's account of epistemic validity in philosophy of science to argue that narrative experience and ‘patient perspective’ should be understood as an ongoing dynamic partnership working between the different stakeholders’ knowledge perspectives. I also address the connection between expertise by experience and the psychiatric significance of the personal self for the entrenched topics of agency, self-hood, personal identity, and self-knowledge in psychiatric diagnosis. In contrast to identity politics, my model of shared decision-making preserves a critical distance between perspective-taking and value itself in self/other appraisal as the gold standard for good clinical practice. (shrink)

Background This study was designed to investigate how patient-reported shared decision-making relates to other aspects of patient centredness and satisfaction. Methods Questionnaire study with patients. Consecutive patients in primary care responding post visit. Associations are presented as proportions, positive predictive values, with 95% confidence intervals. Results 223 patient questionnaires were included. 62% : 55–69) of the patients indicated the highest possible rating of being involved in the decisions about their ongoing care. Self-reported SDM had a positive predictive (...) value of between 85% and 95% for five other patient-centred aspects and satisfaction. Conclusion The results suggest that shared decision making is the patient-centred aspect hardest to achieve and that a patient-centred process leading up to the decision-making increases the chance of the patient being involved in the decision-making. (shrink)

ZusammenfassungSeltene Erkrankungen stellen in vielerlei Hinsicht eine Herausforderung für unser Gesundheitssystem dar. Am deutlichsten wird dies in der Frage, wie Menschen mit einer seltenen Erkrankung eine gute Versorgung und der Zugang zu Forschung vor dem Hintergrund der niedrigen Prävalenz der meisten seltenen Erkrankungen ermöglicht werden kann. Auch auf der Ebene der Arzt-Patient-Beziehung weist der Umgang mit Menschen mit einer seltenen Erkrankung Besonderheiten auf, die es vor allem beim Shared Decision Making zu berücksichtigen gilt. An zwei aktuellen Beispielen, (...) der Uterustransplantation und der Gentherapie, soll analysiert werden, inwiefern die Informiertheit des Patienten und die therapeutische Unsicherheit eine Rolle beim Shared Decision Making bei seltenen Erkrankungen spielen. Abschließend wird gezeigt, warum Shared Decision Making trotz einer oft unzureichenden Umsetzung in der Praxis eine gute Orientierung für die Gestaltung der Arzt-Patient-Beziehung im Kontext von seltenen Erkrankungen bietet. (shrink)

Historically, parents looking for guidance turned to a small cadre of trusted individuals such as grandparents and pediatricians. In the Internet era, this paradigm has shifted. With a few keystrokes, anxious parents have access to a seemingly endless array of opinions from faceless sources with unknown agendas. For some parents, this can cause more uncertainty, and for the parents of a child with a medical condition, navigating this information can be overwhelming. In this modern paradigm, the pediatrician's duty has also (...) become more complex, especially with the shift from paternalism to patient autonomy in medical decision-making. It is within this context that Alan Fleischman's book, Pediatric Ethics: Protecting the Interests of Children, should be examined. A pediatrician and neonatologist, Fleischman has witnessed this evolution over more than five decades of practice. As a clinical and academic bioethicist, he has also witnessed a transformation in the field of bioethics, with shifting perspectives on areas such as research ethics and medical decision-making. Because of his rich experience and deep understanding of the past and present of ethical issues in pediatrics, Fleischman approaches this subject with a perspective that warrants attention and thoughtful consideration. (shrink)

During goals of care conversations, palliative care clinicians help patients and families determine priorities of care and align medical care with those priorities. The style and methods of communicating with families and negotiating a care plan can range from paternalistic to entirely patient driven. In this paper, we describe a case in which the palliative care clinician approached decision-making using a paradigm that is intuitive to many clinicians and which seems conceptually sound, but which has not been fully (...) explored in the bioethics literature. This paradigm, termed maternalism, allows the clinician to direct decision-making within a relationship such that best interests and autonomy are mutually reinforced, thus reflecting relational autonomy as opposed to individual autonomy. We explore whether this method is appropriate in this case and explain how it captures significant ethical features of the case that might be missed by other approaches. (shrink)

Shared Decision-Making is a widely accepted model of the physician–patient relationship providing an ethical environment in which physician beneficence and patient autonomy are respected. It acknowledges the moral responsibility of physician and patient by promoting a deliberative collaboration in which their individual expertise—complementary in nature, equal in importance—is emphasized, and personal values and preferences respected. Its goal coincides with Pellegrino and Thomasma’s proximate end of medicine, that is, a technically correct and morally good healing decision for (...) and with a particular patient. We argue that by perfecting the intellectual ability to apprehend the complexity of clinical situations, and through a perfection of the application of the first principles of practical reason, prudence is able to point toward the right and good shared medical decision. A prudent shared medical decision is therefore always in keeping with the kind of person the physician and the patient have chosen to be. (shrink)

Funders (located primarily in high‐income countries) and high‐income country researchers have historically dominated decision‐making within global health research collaborations: from setting agendas and research design to determining how data are collected and analysed and what happens with findings and outputs. The ethical principle of shared decision‐making has been proposed as a way to help address these imbalances within collaborations and to reduce semicolonial and exploitative forms of global health research. It is important to be clear (...) about what shared decision‐making means in order to ensure that it is not done in a tokenistic, shallow way. Thus far, the principle’s content has not been examined and articulated in detail. This paper aims to start the process of delineating a concept of fair shared decision‐making as a minimum standard for global health research. Using two hypothetical case examples, the paper will demonstrate that global health research practice is often inconsistent with ideal shared decision‐making. In such instances, it can be difficult to decide whether shared decision‐making within collaborations is fair. The paper describes how the two cases do not meet criteria for unfair or non‐ideal shared decision‐making, despite having potentially morally troubling features. The nuances of these examples of research practice help to generate clearer ideas about how to judge fairness in shared decision‐making. The paper concludes by presenting ideas about when soft power can be fairly employed between high‐income‐country and low‐ and middle‐income‐country partners and what fair compromise agreements may look like in shared decision‐making. (shrink)

Shared decision-making is a well-recognized model to guide decision-making in medical care. However, the shared decision-making concept can become exceedingly complex in adolescent patients with varying degrees of autonomy who have most of their medical decisions made by their parents or legal guardians. The complexity increases further in ethically difficult situations such as terminal illness. In contrast to the typical patient-physician dyad, shared decision-making in adolescents requires a decision- (...) class='Hi'>making triad that also includes the parents or guardians. The multifactorial nature of these cases can overwhelm treatment teams, with minimal guidance on how to best approach the patient–parents–physician dynamic in an ethically appropriate manner. Estimated time left to live is the paramount ethical consideration for such cases with respect to shared decision-making. This paper offers a sliding scale to serve as a grounding reference for clinicians who care for terminally ill adolescents and hospital ethics committee members for initiating and guiding the ethical discussion for these patients. This paper also elucidates several other ethically salient features inherent to many of these cases, including quality of life, treatability of disease, cultural influences, among others. Yet how each of these variables is weighed is dependent upon the specific circumstances of each individual case. Ultimately, shared decision-making in adolescent patients with terminal illnesses must be a collaborative and ongoing process that thoughtfully weighs the values and ethical responsibilities of the patient, parents, and physician to ideally reconcile differences and come to a consensus on the best management option for each individual patient. (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)

Shared Decision Making (‘SDM’) is one of the most significant developments in Western health care practices in recent years. Whereas traditional models of care operate on the basis of the physician as the primary medical decision maker, SDM requires patients to be supported to consider options in order to achieve informed preferences by mutually sharing the best available evidence. According to its proponents, SDM is the right way to interpret the clinician-patient relationship because it fulfils the (...) ethical imperative of respecting patient autonomy. However, there is no consensus about how decisions in SDM contexts relate to the principle of respect for autonomy. In response, I demonstrate that in order to make decisions about what treatment they will or will not receive, patients will be required to meet different conditions depending on the approach proponents of SDM take to understanding personal autonomy. Due to the fact that different conceptions of autonomy yield different obligations, I argue that if physicians and patients satisfied all the conditions described in standard accounts of SDM, then SDM would undermine patient autonomy. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:The Ideal of Shared Decision Making Between Physicians and PatientsDan W. Brock (bio)IntroductionShared treatment decision making, with its division of labor between physician and patient, is a common ideal in medical ethics for the physician-patient relationship.1 Most simply put, the physician's role is to use his or her training, knowledge, and experience to provide the patient with facts about the diagnosis and about the (...) prognoses without treatment and with alternative treatments. The patient's role in this division of labor is to provide the values—his or her own conception of the good—with which to evaluate these alternatives, and to select the one that is best for himself or herself. As a rough guide to practice, this is a reasonable conception; most of the time it is likely to produce sound treatment decisions. However, as an ideal it is too simplistic, and is subject to several challenges that I will explore in this paper.Some challenges relate to the physician's role. This facts/values division of labor seems to assume that the physician can and should provide the facts about treatment alternatives in a value-neutral form. But some have questioned whether the sciences on which medicine is based are, or can be, value free. Moreover, the concepts of health and disease, and of the normal and pathological, are held by many to be value laden. And even if it is possible for physicians to provide only value-neutral facts to the patient, should the physicians' role be restricted in this way?Other challenges that I will present in the paper are to the patient's role [End Page 28] as provider of the values for the evaluation of the different treatment alternatives. One defense of this role is based on the claim that physicians are not in a position to know reliably what is in a patient's best interests (Buchanan, forthcoming). I believe at least as influential—even if often not explicitly stated—is an extreme subjectivism about values that assumes that the patient's own ultimate values, which define his or her own conception of the good, are incorrigible. By incorrigible, I mean they cannot be mistaken. In the standard case in which treatment is pursued for the patient's benefit, this extreme subjectivism is thought to support the patient's values guiding treatment decision making and treatment. I will explore this incorrigibility claim and will argue that on each of the main philosophical conceptions of the good for persons it is indefensible and should not be the basis for shared treatment decision making.Underlying this view of the physician-patient division of labor are assumptions and beliefs about the nature and relation of facts and values, and science and ethics, that are largely the legacy of a logical positivism that has long since been rejected by most philosophers. It is time that these unstable foundations for our normative ideal of the physician-patient relation were finally removed and replaced with more defensible underpinnings.Two Models of the Physician-Patient RelationshipPositivists insisted on a relatively sharp distinction between descriptive or empirical claims and science, on the one hand, and evaluative claims and ethics, on the other.2 Descriptive statements and the claims of science were to be true or false according to whether they in fact correctly described and explained the world. By remaining properly descriptive or empirical, science could, at least in principle, be entirely value neutral or value free.In its more extreme versions, positivism held that ethical judgments lacked cognitive content, but were instead expressions of emotions or attitudes, and as such could be neither true nor false, correct or mistaken. Because no evaluative statements were held to be logically entailed by any descriptive or empirical statements, moral reasoning was thought to be properly understood not as reasoning but as attempts at nonrational persuasion.3 Many drew from this an extreme subjectivism in ethics along the lines of what I have called above the incorrigibility thesis—there is no meaningful sense in which an individual's ultimate values defining his or her own conception of the good life could be mistaken, false, or unfounded.These... (shrink)

Medical paternalism has long been a common medical practice. However, patient autonomy in healthcare has been recently adopted by doctors and patients alike. This study explored whether doctors and patients in a tertiary care hospital in Saudi Arabia preferred autonomy or paternalism in shared decision‐making. A total of 118 participants (51 patients requiring total knee replacement, owing to stages 3–4 of osteoarthritis, and 67 doctors) from the Eastern province, Saudi Arabia. responded to a 17‐question category‐based questionnaire involving (...) four scales of autonomy. Descriptive statistics and chi‐square test results revealed that in this hospital, patients preferred a paternalistic approach toward their medical care along with a full disclosure of the risks related to surgical procedures. We recommend health education regarding the specific autonomy subscales (doctor knows best, patient should decide, right to non‐participation, and obligatory risk information), and the implementation of protocols that protect patients' rights and enhance personal autonomy. (shrink)

It is the case of a 66-year-old man in a permanent vegetative state which his family is blocked due to suffering. A process and a document of a shared decision-making between the family and the professional team allowed giving emotional support, unlocking the situation and preventing complicated grief.

This “Legal Briefing” column covers recent legal developments involving patient decision aids. This topic has been the subject of recent articles in JCE. It is included in the 2010 Patient Protection and Affordable Care Act. And it has received significant attention in the biomedical literature, including a new book, a thematic issue of Health Affairs, and a recent article in the New England Journal of Medicine. Moreover, physicians and health systems across the United States are increasingly integrating decision (...) aids into their clinical practice. Both federal and state laws play a significant role in promoting this expanded use. On the other hand, concerns about liability could stymie development and implementation. We categorize legal developments concerning patient decision aids into the following five sections:1. Development of decision aids2. Effectiveness of decision aids3. Federal regulation of decision aids4. State regulation of decision aids5. Legal concerns regarding decision aids. (shrink)

In the western healthcare, shared decision making has become the orthodox approach to making healthcare choices as a way of promoting patient autonomy. Despite the fact that the autonomy paradigm is poorly suited to paediatric decision making, such an approach is enshrined in English common law. When reaching moral decisions, for instance when it is unclear whether treatment or non-treatment will serve a child’s best interests, shared decision making is particularly questionable (...) because agreement does not ensure moral validity. With reference to current common law and focusing on intensive care practice, this paper investigates what claims shared decision making may have to legitimacy in a paediatric intensive care setting. Drawing on key texts, I suggest these identify advantages to parents and clinicians but not to the child who is the subject of the decision. Without evidence that shared decision making increases the quality of the decision that is being made, it appears that a focus on the shared nature of a decision does not cohere with the principle that the best interests of the child should remain paramount. In the face of significant pressures toward the displacement of the child’s interests in a shared decision, advantages of a shared decision to decisional quality require elucidation. Although a number of arguments of this nature may have potential, should no such advantages be demonstrable we have cause to revise our commitment to either shared decision making or the paramountcy of the child in these circumstances. (shrink)

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)

Current methods of obtaining an informed consent leave much to be desired. Patients rarely read consent forms or understand all of the risks, benefits, or alternatives associated with their treatment. Evaluating the advantages and disadvantages of treatment options often presents a more significant challenge for patients with lower levels of health literacy. This article reviews the evidence of shortcomings in our informed consent system and then explores the potential for a new approach to engage patients at all levels of health (...) literacy in their treatment decisions. Specifically, the article will examine the potential of shared decision-making to bridge gaps in knowledge, increase patient adherence to treatment, and improve health outcomes in low health literacy patient populations. Leveling barriers to treatment information for disadvantaged populations should be a public health imperative, especially if it can be shown to improve health outcomes and reduce health disparities. (shrink)

Current methods of obtaining an informed consent leave much to be desired. Patients rarely read consent forms or understand all of the risks, benefits, or alternatives associated with their treatment. Evaluating the advantages and disadvantages of treatment options often presents a more significant challenge for patients with lower levels of health literacy. This article reviews the evidence of shortcomings in our informed consent system and then explores the potential for a new approach to engage patients at all levels of health (...) literacy in their treatment decisions. Specifically, the article will examine the potential of shared decision-making to bridge gaps in knowledge, increase patient adherence to treatment, and improve health outcomes in low health literacy patient populations. Leveling barriers to treatment information for disadvantaged populations should be a public health imperative, especially if it can be shown to improve health outcomes and reduce health disparities. (shrink)