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)

In this article we summarise some previously described proposals for ethical governance of autonomous vehicles, critique them, and offer an alternative solution. Rather than programming cars to react to crash situations in the same way as humans, having humans program pre-set responses for a wide range of different potential scenarios, or applying particular ethical theories, we suggest that decisions should be made jointly between humans and cars. Given that humans lack the requisite processing capacity, and computers lack the necessary (...) ethical capacity, the medical paradigm of advance care planning can be retooled for this new context. Advance car-crash planning provides a way to combine humans’ ethical preferences with the advanced data processing capacities of computers to enable shared decision making in collision situations. (shrink)

In Japan, where a prominent gap exists in what is considered a patient’s best interest between the medical and patient sides, appropriate decision-making can be difficult to achieve. In Japanese clinical settings, decision-making is considered an act of choice-making from multiple potential options. With many ethical dilemmas still remaining, establishing an appropriate decision-making process is an urgent task in modern Japanese healthcare. This paper examines ethical issues related to shared decision-making (...) (SDM) in clinical settings in modern Japan from the psychocultural-social perspective and discusses the ideal decision-making process in present Japan. Specifically, we discuss how five psychocultural-social tendencies – “surmise (Sontaku),” “self-restraint (Jishuku),” “air (atmosphere or mood, Kuuki),” “peer pressure (or tuning pressure, Docho-Atsuryoku),” and “community (Seken)”—which have often been referred to as characteristics of present-day Japanese people, may affect the ideal practice of SDM in Japanese clinical settings. We conclude that health care professionals must be aware of the possible adverse effects of the above Japanese psychocultural-social tendencies on the implementation of SDM and attempt to promote autonomous decision-making, thereby allowing patients to make treatment choices that sufficiently reflect their individual and personal views of life, experiences, goals, preferences, and values. (shrink)

Rational decision making depends on what one believes, what one desires, and what one knows. In conventional decision models, beliefs are represented by probabilities and desires are represented by utilities. Software agents are knowledgeable entities capable of managing their own set of beliefs and desires, and they can decide upon the next operation to execute autonomously. They are also interactive entities capable of filtering communications and managing dialogues. Knowledgeability includes representing knowledge about the external world, reasoning with (...) it, and sharing it. Interactions include negotiations to perform tasks in cooperative, coordinative, and competitive ways. In this paper we focus on decision-making mechanisms for agent-based systems on the basis of agent interaction. We identify possible interaction scenarios and define mechanisms for decision making in uncertain environments. It is believed that software agents will become the underlying technology that offers the capability of distribution of competence, control, and information for the next generation of ubiquitous, distributed, and heterogeneous information systems. (shrink)

This article argues that standard models of person-centred care (PCC) and shared decision making (SDM) rely on simplistic, often unrealistic assumptions of patient capacities that entail that PCC/SDM might have detrimental effects in many applications. We suggest a complementary PCC/SDM approach to ensure that patients are able to execute rational decisions taken jointly with care professionals when performing self-care. Illustrated by concrete examples from a study of adolescent diabetes care, we suggest a combination of moral and psychological (...) considerations to support the claim that standard PCC/SDM threatens to systematically undermine its own goals. This threat is due to a tension between the ethical requirements of SDM in ideal circumstances and more long-term needs actualized by the context of self-care handled by patients with limited capacities for taking responsibility and adhere to their own rational decisions. To improve this situation, we suggest a counseling, self-care, adherence approach to PCC/SDM, where more attention is given to how treatment goals are internalized by patients, how patients perceive choice situations, and what emotional feedback patients are given. This focus may involve less of a concentration on autonomous and rational clinical decision making otherwise stressed in standard PCC/SDM advocacy. (shrink)

Rational decision making depends on what one believes, what one desires, and what one knows. In conventional decision models, beliefs are represented by probabilities and desires are represented by utilities. Software agents are knowledgeable entities capable of managing their own set of beliefs and desires, and they can decide upon the next operation to execute autonomously. They are also interactive entities capable of filtering communications and managing dialogues. Knowledgeability includes representing knowledge about the external world, reasoning with (...) it, and sharing it. Interactions include negotiations to perform tasks in cooperative, coordinative, and competitive ways. In this paper we focus on decision-making mechanisms for agent-based systems on the basis of agent interaction. We identify possible interaction scenarios and define mechanisms for decision making in uncertain environments. It is believed that software agents will become the underlying technology that offers the capability of distribution of competence, control, and information for the next generation of ubiquitous, distributed, and heterogeneous information systems. (shrink)

Background One of the biggest challenges of practicing medicine in the age of informational technology is how to conciliate the overwhelming amount of medical-scientific information with the multiple patients’ values of modern pluralistic societies. To organize and optimize the the Decision-Making Process of seriously ill patient care, we present a framework to be used by Healthcare Providers. The objective is to align Bioethics, Evidence-based Practice and Person-centered Care. Main body The framework divides the DMP into four steps, each (...) with a different but complementary focus, goal and ethical principle. Step 1 focuses exclusively on the disease, having accuracy is its ethical principle. It aims at an accurate and probabilistic estimation of prognosis, absolute risk reduction, relative risk reduction and treatments’ burdens. Step 2 focuses on the person, using empathic communication to learn about patient values and what suffering means for the patient. Emphasis is given to learning and active listening, not taking action. Thus, instead beneficence, we trust comprehension and understanding with the suffering of others and respect for others as autonomous moral agents as the ethical principles of Step 2. Step 3 focuses on the healthcare team, having the ethics of situational awareness guiding this step. The goal is, through effective teamwork, to contextualize and link rates and probabilities related to the disease to the learned patient’s values, presenting a summary of which treatments the team considers as acceptable, recommended, potentially inappropriate and futile. Finally, Step 4 focuses on provider-patient relationship, seeking shared Goals of Care, for the best and worst scenario. Through an ethics of deliberation, it aims for a consensus that could ensure that the patient’s values will be respected as well as a scientifically acceptable medical practice will be provided. In summary: accuracy, comprehension, understanding, situational awareness and deliberation would be the ethical principles guiding each step. Conclusion Hopefully, by highlighting and naming the different perspectives of knowledge needed in clinical practice, this framework will be valuable as a practical and educational tool, guiding modern medical professionals through the many challenges of providing high quality person-centered care that is both ethical and evidence based. (shrink)

ABSTRACT Objectives: To investigate whether Chinese adolescents in Hong Kong share similar perceptions with their Western counterparts regarding their capacity for autonomous decision‐making, and secondarily whether Chinese parents underestimate their adolescent children's desire and capacity for autonomous decision‐making. Method:‘Healthy Adolescents’ and their parents were recruited from four local secondary schools, and ‘Sick Adolescents’ and their parents from the pediatric wards and outpatient clinics. Their perceptions of adolescents' understanding of illnesses and treatments, maturity in judgment, (...) risk‐taking, openness to divergent opinions, pressure from parents and doctors, submission to parental authority and preference for autonomy in medical decision‐making are surveyed by a 50‐item questionnaire on a five‐point Likert scale. Results: Findings indicate that Chinese adolescents aged 14–16 perceive themselves to possess the necessary cognitive abilities and maturity in judgment to be autonomous decision‐makers like their Western counterparts. Paradoxically, although they hesitate to assert their autonomy, they are also unwilling to surrender that autonomy to their parents even under coercion or intimidation. Parents tend to underestimate their adolescents' preferences for making autonomous decisions and overestimate the importance of parental authority in decision‐making. Conclusion:‘14‐and‐above’ Chinese adolescents in Hong Kong perceive themselves as capable of autonomous decision‐making in medically‐related matters, but hesitate to assert their autonomy, probably because of the Confucian values of parental authority and filial piety that are deeply embedded in the local culture. (shrink)

ABSTRACT Objectives: To investigate whether Chinese adolescents in Hong Kong share similar perceptions with their Western counterparts regarding their capacity for autonomous decision‐making, and secondarily whether Chinese parents underestimate their adolescent children's desire and capacity for autonomous decision‐making. Method:‘Healthy Adolescents’ and their parents were recruited from four local secondary schools, and ‘Sick Adolescents’ and their parents from the pediatric wards and outpatient clinics. Their perceptions of adolescents' understanding of illnesses and treatments, maturity in judgment, (...) risk‐taking, openness to divergent opinions, pressure from parents and doctors, submission to parental authority and preference for autonomy in medical decision‐making are surveyed by a 50‐item questionnaire on a five‐point Likert scale. Results: Findings indicate that Chinese adolescents aged 14–16 perceive themselves to possess the necessary cognitive abilities and maturity in judgment to be autonomous decision‐makers like their Western counterparts. Paradoxically, although they hesitate to assert their autonomy, they are also unwilling to surrender that autonomy to their parents even under coercion or intimidation. Parents tend to underestimate their adolescents' preferences for making autonomous decisions and overestimate the importance of parental authority in decision‐making. Conclusion:‘14‐and‐above’ Chinese adolescents in Hong Kong perceive themselves as capable of autonomous decision‐making in medically‐related matters, but hesitate to assert their autonomy, probably because of the Confucian values of parental authority and filial piety that are deeply embedded in the local culture. (shrink)

Objectives: To investigate whether Chinese adolescents in Hong Kong share similar perceptions with their Western counterparts regarding their capacity for autonomous decision-making, and secondarily whether Chinese parents underestimate their adolescent children's desire and capacity for autonomous decision-making.Method:‘Healthy Adolescents’ and their parents were recruited from four local secondary schools, and ‘Sick Adolescents’ and their parents from the pediatric wards and outpatient clinics. Their perceptions of adolescents' understanding of illnesses and treatments, maturity in judgment, risk-taking, openness (...) to divergent opinions, pressure from parents and doctors, submission to parental authority and preference for autonomy in medical decision-making are surveyed by a 50-item questionnaire on a five-point Likert scale.Results: Findings indicate that Chinese adolescents aged 14–16 perceive themselves to possess the necessary cognitive abilities and maturity in judgment to be autonomous decision-makers like their Western counterparts. Paradoxically, although they hesitate to assert their autonomy, they are also unwilling to surrender that autonomy to their parents even under coercion or intimidation. Parents tend to underestimate their adolescents' preferences for making autonomous decisions and overestimate the importance of parental authority in decision-making.Conclusion:‘14-and-above’ Chinese adolescents in Hong Kong perceive themselves as capable of autonomous decision-making in medically-related matters, but hesitate to assert their autonomy, probably because of the Confucian values of parental authority and filial piety that are deeply embedded in the local culture. (shrink)

This article examines how people with type 2 diabetes perceive autonomous decision making and which moral capacities they consider important in diabetes nurses' support of autonomous decision making. Fifteen older adults with type 2 diabetes were interviewed in a nurse-led unit. First, the data were analysed using the grounded theory method. The participants described a variety of decision-making processes in the nurse and family care-giver context. Later, descriptions of the decision-making (...) processes were analysed using hermeneutic text interpretation. We suggest first- and second-order moral capacities that nurses specializing in diabetes need to promote the autonomous decision making of their patients. We recommend nurses to engage in ongoing, interactive reflective practice to further develop these moral capacities. (shrink)

‘Shared’ decision-making is heralded as the gold standard of how medical decisions should be reached, yet how does one ‘share’ a decision when any attempt to do so will undermine _autonomous_ decision-making? And what exactly is being shared? While some authors have described parallels in literature, philosophical examination of shared agency remains largely uninvestigated as an explanation in bioethics. In the following, shared decision-making will be explained as occurring when (...) a group, generally comprised of a patient and or their family, and the medical team become a genuine intentional subject which acts as a collective agent. Collective agency can better explain how some medical decisions are reached, contrary to the traditional understanding and operationalization of ‘autonomy’ in bioethics. Paradoxically, this often occurs in the setting of high-stakes moral decision-making, where conventional wisdom would suggest individuals would _most_ want to exercise autonomous action according to their personally held values and beliefs. This explication of shared decision-making suggests a social ontology ought to inform or displace significant aspects of autonomy as construed in bioethics. It will be argued that joint commitments are a fundamental part of human life, informing and explaining much human behavior, and thus suggesting that autonomy - conceived of as discrete, individuated moral reasoning of a singular moral agent - is not an unalloyed ‘good.’. (shrink)

Medical communication in Western-oriented countries is dominated by concepts of shared decision-making and patient autonomy. In interactions with Roma patients, these behavioral patterns rarely seem to be achieved because the culture and ethnicity have often been shown as barriers in establishing an effective and satisfying doctor–patient relationship. The study aims to explore the Roma’s beliefs and experiences related to autonomy and decision-making process in the case of a disease with poor prognosis. Forty-eight Roma people from (...) two Romanian counties participated in semi-structured interviews, conducted by a research team from the University of Medicine and Pharmacy of Iasi. Participants were recruited among the chronically ill patients and caregivers. The Roma community opposes informing the terminal patients about their condition, the “silence conspiracy” being widely practiced. The family fully undertakes the right of decision making, thus minimizing the patient’s autonomy. We identified ethical dilemmas concerning autonomy, lack of patients’ real decision-making power, and paternalistic attitudes exerted firstly by the family and, on demand, by the physician. Instead, the Roma patient benefits from a very active support network, being accompanied at the hospital by numerous relatives. The patient’s right to make autonomous decisions promoted in the Western countries and stipulated by the Romanian law has diminished value in the Roma community. For the Roma, the understanding of dignity is not simply individual and personal, but it is closely related to their cultural particularities. Ignoring their cultural values could create conflicts between healthcare providers and community. (shrink)

The aim of the paper is to reconsider Habermas’ discourse approach in terms of its usefulness in the realm of public healthcare where, on a microscale, intersubjective communicative situations arise between defined participants, i.e., patients and healthcare providers, patients’ family members, and further eligible contributors to patient-related decision making. A need for more “communicative interaction,” and explicative and practical discourse, is illustrated by two empirical examples of medical decision making which reveal both communicative and discursive deficits. (...) To empower and enable the patient as a rational and autonomous speaker and discourse participant, a Habermasian emancipatory argument and ‘the power of the better argument’ is recalled. The possibility of equal communicative and discursive rights in the light of real inequalities is discussed in the context of a ‘competence gap’ between participants. Further sections focus on the importance of informed consent on the side of the patient and the communicative competences as an important factor of healthcare system. (shrink)

Crucial problems exist in understanding Japanese traditional customs with regard to autonomous decision making by patients in Japan. These problems are difficult to comprehend because they seem, by western standards, to defy logic. Questions that baffle those outside the Japanese tradition, include: Why do many Japanese patients hesitate to make medical treatment and care decisions for themselves without consulting family, close friends, or someone viewed as being in a superior position? Why do many Japanese physicians fail to (...) disclose the truth directly to the patient, instead customarily conveying information to family members, despite the doctors' awareness of their legal obligation to protect the patient's privacy? Why do many Japanese physicians continue to question whether patients should be told the truth at all? What perpetuates Japan's widespread, but often unnoticed, neglect of the individual's right to self-determination in healthcare decision making? (shrink)

Research is a global enterprise requiring participation of both genders for generalizable knowledge; advancement of science and evidence based medical treatment. Participation of women in research is necessary to reduce the current bias that most empirical evidence is obtained from studies with men to inform health care and related policy interventions. Various factors are assumed to limit autonomy amongst the Yoruba women of western Nigeria. This paper seeks to explore the experience and understanding of autonomy by the Yoruba women in (...) relation to research participation. Focus is on factors that affect women's autonomous decision making in research participation. An exploratory qualitative approach comprising four focus group discussions, 42 in-depth interviews and 14 key informant interviews was used. The study permits a significant amount of triangulation, as opinions of husbands and religious leaders are also explored. Interviews and discussions were audiotaped and transcribed verbatim. Content analysis was employed for data analysis. Findings show that concepts of autonomy varied amongst the Yoruba women. Patriarchy, religion and culture are conceived to have negative impact on the autonomy of women in respect to research participation. Among the important findings are: 1) male dominance is strongly emphasized by religious leaders who should teach equality, 2) while men feel that by making decisions for women, they are protecting them, the women on the other hand see this protection as a way of limiting their autonomy. We recommend further studies to develop culturally appropriate and workable recruitment methods to increase women's participation in research. (shrink)

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)

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)

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.

The ethics of autonomous vehicles has received a great amount of attention in recent years, specifically in regard to their decisional policies in accident situations in which human harm is a likely consequence. Starting from the assumption that human harm is unavoidable, many authors have developed differing accounts of what morality requires in these situations. In this article, a strategy for AV decision-making is proposed, the Ethical Valence Theory, which paints AV decision-making as a type (...) of claim mitigation: different road users hold different moral claims on the vehicle’s behavior, and the vehicle must mitigate these claims as it makes decisions about its environment. Using the context of autonomous vehicles, the harm produced by an action and the uncertainties connected to it are quantified and accounted for through deliberation, resulting in an ethical implementation coherent with reality. The goal of this approach is not to define how moral theory requires vehicles to behave, but rather to provide a computational approach that is flexible enough to accommodate a number of ‘moral positions’ concerning what morality demands and what road users may expect, offering an evaluation tool for the social acceptability of an autonomous vehicle’s ethical decision making. (shrink)

This case study discusses the challenges of end-of-life decision-making in practice, focusing on the delicate balance between medical paternalism, shared decision-making, and the rights of surrogate decision makers. The family initially struggles to grasp the severity of their loved one’s medical condition but a pivotal moment during the Goals of Care meeting brings sudden clarity. This case explores the appropriateness and implications of the practice of informed non-dissent; and our analysis suggests that it is (...) inappropriate unless there is compelling evidence for decision paralysis. Practical strategies are offered that facilitate compassionate dying care within the constraints of clinical urgency. (shrink)

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)

It is commonly held that, given multiple medically permissible ways of proceeding, each with a different impact on the patient’s future, it is extremely important, and part of respecting patient autonomy, that patients not be under substantial pressure to defer to their physicians’ presumed authority. Some, however, worry that the focus on patient autonomy can be detrimental and that, at least in cases where it is hard to grasp what it is really like to live with certain outcomes without any (...) first‐hand or second‐hand experience, it is best if patient choice is firmly directed, or at least effectively nudged, by the recommendation of an experienced medical professional. The idea seems to be that, since physicians cannot get their patients to promptly assimilate a large amount of information and experience, physicians must, if they are to really help their patients make good decisions in hard cases, exert non‐argumentative influence on them. But this neglects an interesting possibility, namely the possibility of influencing patients by providing them with evidence regarding what decisions have proved most satisfactory for patients with their profile. Approximations of patient profile tests are already employed in medical practice. But the potential of the profile‐test approach in medical practice (and research) has been obscured by ongoing debate that neglects the significance of the approach with respect to the apparent dilemma faced by patients who need to make informed, autonomous decisions but cannot be expected to fully assimilate, in short order, the knowledge and experience of their physicians. (shrink)

Primary health care is characterised by timely and appropriate health care access, delivered continuously over time to a specific population, providing a comprehensive service, with coordination of care for those that need it. Practitioners deal with a multiplicity of clinical issues within longitudinal relationships, embedded in the context of families and communities. We propose that these aspects of primary care have a bearing on how matters of decision making are considered and implemented. Further, the standard account of (...) class='Hi'>autonomous decision making is not wholly adequate when applied to clinician–patient encounters in primary care. We add considerations of the impact of illness (however defined) and self-identity as also relevant to a more measured and full account. The context of primary care is quite different from that of secondary care. Although there are generalists who work in hospitals, we argue that this aspect and the other attributes of primary care generate special ethical considerations. One of these is how autonomy, or more fully, how respect for the principle of autonomy is considered and operationalised in community practice. In this study, we describe some theoretical aspects of autonomy and seek to apply, and challenge, these aspects in the context of clinical work in primary care. In doing so we will review the descriptors of primary care: why in essence it is different from other contexts of clinical work. (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.

Decision making during reproduction is complex for a variety of medical and social reasons. Anyone who has had a conversation with a family member about the “best time” to have a baby can attest to this — there is no “best time” or “best way.” Multiple pressures from any number of sources combine in a minefield of hazards made ever more complicated by restrictive laws in the US. Add to this a screening result of potential chromosomal aneuploidy and (...) decision making becomes ever more complex. Societal stigma and lack of adequate and accurate information during counseling certainly plays a role in the high number of terminations in the setting of diagnosed chromosomal aneuploidy, yet other factors also push families in this direction including medical considerations and the abysmal lack of social support programs. (shrink)

In this paper it is first investigated to what extent the institutional goal and basic principles of shared decision making are compatible with the aim and rules for critical discussion. Next, some techniques that doctors may use to present their own treatment preferences strategically in a shared decision making process are discussed and evaluated both from the perspective of the ideal of shared decision making and from that of critical discussion.

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)

In this article I consider two pertinent questions that practitioners must consider when they deploy an algorithmic system as support in clinical shared decision‐making. The first question concerns how to interpret and assess the significance of different performance measures for clinical decision‐making. The second question concerns the professional obligations that practitioners have to communicate information about the quality of an algorithm's output to patients in light of the principles of autonomy, beneficence, and justice. In the (...) article I review the four standard performance measures used to evaluate and validate algorithms, outline their role in the discussion of algorithmic fairness, and discuss the professional responsibilities that practitioners face when communicating information about these measures to patients. (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)

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

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)

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)

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)

Definition of the problemThe Shared Decision Making model is becoming increasingly popular also in the German-speaking context, but it only considers values of patients to be relevant for medical decisions. Nevertheless, studies show that the values of physicians are also influential in medical decisions. Moreover, physicians are often unaware of this influence, which makes it impossible to control it.ArgumentsThe influence of both patients’ and physicians’ values is examined from an empirical and normative perspective. The review about the (...) empirical data provides a necessary overview about the status quo, whereas I deduct rules for value-influenced behaviour in the decision making process in the normative approach. Therefore, different scenarios are taken into account to explore in which situations it is acceptable for physicians to let their values be part of the decision making process. The conscious use of values is only possible, when physicians are aware of their influence. To raise awareness, the best option would be to educate future physicians about it in their training. Therefore, this article provides a teaching concept for a unit that could be part of an ethics class for physicians in training. Furthermore, patient’s rights and responsibilities in the decision making process are discussed.ConclusionI conclude that it is necessary to take the influence of values into account and include this knowledge into the training of physicians. Conclusively, recommendations for patients and physicians and their dealing with values in shared decision making processes are suggested. (shrink)

Definition of the problemThe Shared Decision Making model is becoming increasingly popular also in the German-speaking context, but it only considers values of patients to be relevant for medical decisions. Nevertheless, studies show that the values of physicians are also influential in medical decisions. Moreover, physicians are often unaware of this influence, which makes it impossible to control it.ArgumentsThe influence of both patients’ and physicians’ values is examined from an empirical and normative perspective. The review about the (...) empirical data provides a necessary overview about the status quo, whereas I deduct rules for value-influenced behaviour in the decision making process in the normative approach. Therefore, different scenarios are taken into account to explore in which situations it is acceptable for physicians to let their values be part of the decision making process. The conscious use of values is only possible, when physicians are aware of their influence. To raise awareness, the best option would be to educate future physicians about it in their training. Therefore, this article provides a teaching concept for a unit that could be part of an ethics class for physicians in training. Furthermore, patient’s rights and responsibilities in the decision making process are discussed.ConclusionI conclude that it is necessary to take the influence of values into account and include this knowledge into the training of physicians. Conclusively, recommendations for patients and physicians and their dealing with values in shared decision making processes are suggested. (shrink)

Definition of the problemThe Shared Decision Making model is becoming increasingly popular also in the German-speaking context, but it only considers values of patients to be relevant for medical decisions. Nevertheless, studies show that the values of physicians are also influential in medical decisions. Moreover, physicians are often unaware of this influence, which makes it impossible to control it.ArgumentsThe influence of both patients’ and physicians’ values is examined from an empirical and normative perspective. The review about the (...) empirical data provides a necessary overview about the status quo, whereas I deduct rules for value-influenced behaviour in the decision making process in the normative approach. Therefore, different scenarios are taken into account to explore in which situations it is acceptable for physicians to let their values be part of the decision making process. The conscious use of values is only possible, when physicians are aware of their influence. To raise awareness, the best option would be to educate future physicians about it in their training. Therefore, this article provides a teaching concept for a unit that could be part of an ethics class for physicians in training. Furthermore, patient’s rights and responsibilities in the decision making process are discussed.ConclusionI conclude that it is necessary to take the influence of values into account and include this knowledge into the training of physicians. Conclusively, recommendations for patients and physicians and their dealing with values in shared decision making processes are suggested. (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)

Introduction It is increasingly considered important that people make an autonomous and informed decision concerning colorectal cancer screening. However, the realisation of autonomy within the concept of informed decision-making might be interpreted too narrowly. Additionally, relatively little is known about what the eligible population believes to be a 'good' screening decision. Therefore, we aimed to explore how the concepts of autonomous and informed decision-making relate to how the eligible CRC screening population makes (...) their decision and when they believe to have made a 'good' screening decision. Methods We conducted 27 semi-structured interviews with the eligible CRC screening population. The general topics discussed concerned how people made their CRC screening decision, how they experienced making this decision and when they considered they had made a 'good' decision. Results Most interviewees viewed a 'good' CRC screening decision as one based on both reasoning and feeling/intuition, and that is made freely. However, many CRC screening non-participants experienced a certain social pressure to participate. All CRC screening non-participants viewed making an informed decision as essential. This appeared to be the case to a lesser extent for CRC screening participants. For most, experiences and values were involved in their decision-making. Conclusion Our sample of the eligible CRC screening population viewed aspects related to the concepts of autonomous and informed decision-making as important for making a 'good' CRC screening decision. However, in particular the existence of a social norm may be affecting a true autonomous decision-making process. Additionally, the present concept of informed decision-making with its strong emphasis on making a fully informed and well-considered decision does not appear to be entirely reflective of the process in practice. More efforts could be made to attune to the diverse values and factors that are involved in deciding about CRC screening participation. (shrink)