Objectives: The objectives of the study were to assess similarities and differences between breast cancer patients and their husbands in terms of doctor-patient/spouse relationships and shared decision making; and to investigate the association between breast cancer patients and husbands in terms of preference of type of doctor, doctor-patient relationship, and shared decision making regarding medical treatment. Method: Fifty-seven women with breast cancer, and their husbands, completed questionnaires measuring doctor-patient/spouse relationships, and decision making regarding (...) medical treatment. Results: Patients believe they have a key role in the medical decision-making process and that the participation of their husbands, and their agreement with the decision, is important. Both breast cancer patients and their husbands prefer a shared decision-making process to paternalistic or autonomy-based approaches. Conclusion: In contrast to legal and bioethical approaches, which focus on the patient as the primary decision maker, this study reflects a practical recognition of the role of the breast cancer patient's husband in the decision-making process. It also reflects a relational rather than an individualistic perception of patient autonomy. (shrink)

The medical decision-making process is currently in flux. Decisions are no longer made entirely at the physician's discretion: patients are becoming more and more involved in the process. There is a great deal of discussion about the ideal of ‘informed consent’, that is that diagnostic and therapeutic decisions should be made based on an interaction between physician and patient. This means that patients are informed about the advantages and disadvantages of a treatment as well as (...) alternatives to the treatment; then, based on this information they can decide whether or not they want to undergo the treatment. However, recent studies show that the realisation of the ideal of ‘shared decision-making’ faces a number of difficulties related to the fact that patients are not provided with complete and accurate information. Using the example of breast cancer screening, this article examines the question of whether, in light of these difficulties, the ideal of informed decision-making is only an illusion or whether concrete steps can be taken towards the realisation of this ideal. (shrink)

The number of admissions to hospitals of patients without a proxy decision maker is rising. Very often these patients need fairly immediate medical intervention for which informed consent—or informed refusal—is required. Many have recommended that there be a process in place to make these decisions, and that it include a variety of perspectives. People are particularly wary of relying solely on medical staff to make these decisions. The University Hospitals Case Medical Center recruits community members (...) from its Ethics Committee to serve on a subcommittee, the Patients Without Proxies (PWP) Committee, which works with medical staff during the decision-making process for these patients. Generally, the community members go to the bedside to observe patients. This article looks at how those unused to observing hospitalized patients who are sick and/or dying are affected, comparing them to mock jurors in a research study who are exposed to graphic photographs related to a fabricated crime scene. Judgments made by the mock jurors are affected by viewing such images. The personal experience of witnessing unfamiliar and shocking scenes affects their subsequent judgments. While it may be difficult to tease out whether observing patients causes PWP members to be benefited or harmed, they are affected by what they see. If a variety of perspectives is desirable to reduce possible bias or error, this article argues that at least one community member should refrain from seeing the patient in order to add a different and valuable voice to the decision-making process. Members of the subcommittee base their judgments on the various kinds of information available. Sometimes the things they see, hear, or feel may affect them particularly deeply, and affect their judgments as well. In this article I explore the idea that something like this may be happening in a particular kind of clinical ethics case consultation. (shrink)

Objectives—To investigate the factors considered by staff, and the practicalities involved in the decision making process regarding the withdrawal or withholding of potential life-sustaining treatment in a children's hospital. To compare our current practice with that recommended by the Royal College of Paediatrics and Child Health guidelines, published in 1997.Design—A prospective, observational study using self-reported questionnaires.Setting—Tertiary paediatric hospital.Patients and participants—Consecutive patients identified during a six-month period, about whom a formal discussion took place between medical staff, nursing (...) staff and family regarding the withholding or withdrawal of potentially life-sustaining treatments. The primary physician and primary nurse involved in the discussion were identified.Method—Two questionnaires completed independently by the primary physician and nurse.Results—Twenty-two patients were identified . In 20 cases treatment was withdrawn or withheld, in two cases treatment was continued. Nursing staff considered family wishes and family perceptions of patient suffering as significantly more important factors in decision making than medical staff, who considered prognostic factors as most important. In only two cases were the patient's expressed wishes apparently available. In most cases staff considered the patient's best interests were served and the process would not be enhanced by the involvement of an independent ethics committee. The exceptions were those cases in which treatment was continued following disagreement between parties.Conclusions—Our current practice is consistent with that recommended by the RCPCH. The contribution of the patient, provision of staff counselling and general practitioner involvement were identified as areas for improvement. (shrink)

Decision making is a key activity, perhaps the most important activity, in the practice of healthcare. Although physicians acquire a great deal of knowledge and specialised skills during their training and through their practice, it is in the exercise of clinical judgement and its application to individual patients that the outstanding physician is distinguished. This has become even more relevant as patients become increasingly welcomed as partners in a shared decision making process. This book translates (...) the research and theory from the science of decision making into clinically useful tools and principles that can be applied by clinicians in the field. It considers issues of patient goals, uncertainty, judgement, choice, development of new information, and family and social concerns in healthcare. It helps to demystify decision theory by emphasizing concepts and clinical cases over mathematics and computation. (shrink)

Clinical judgment, also called clinical reasoning, clinical decision-making, and diagnostic-therapeutic decision-making, lies at the heart of clinical practice and thus medicine. In thepast, clinical judgment was considered the expert task of the physician. But the advent of computers in the 1940s and their use in medicine as of the late 1950s gradually changed this situation. In the 1960s, a new discipline emerged that has come to be termed medical computer science or medical informatics, including (...) clinical informatics. Clinical informatics is concerned with all aspects of the application of computing machinery in clinical research and practice. As one of its accomplishments in clinical practice, the physician’s capacity for clinical judgment is in the process of being turned over to computers. We are told that computers will be responsible for making diagnoses and treatment decisions in a not-too-distant future. This prospect, its historical, methodological and philosophical background, and its impact on health care will be discussed in the present Part VI which divides into these three chapters: 19 Medical Decision-Making 20 Clinical Decision Support Systems 21 Artificial Intelligence in Medicine? (shrink)

In this paper, I explore the role that regret does and should play in medical decision-making. Specifically, I consider whether the possibility of a patient experiencing post-treatment regret is a good reason for a clinician to counsel against that treatment or to withhold it. Currently, the belief that a patient may experience post-treatment regret is sometimes taken as a sufficiently strong reason to withhold it, even when the patient makes an explicit, informed request. Relatedly, medical researchers (...) and practitioners often understand a patient’s post-treatment regret to be a significant problem, one that reveals a mistake or flaw in the decision-making process. Contrary to these views, I argue that the possibility of post-treatment regret is not necessarily a good reason for withholding the treatment. This claim is justified by appealing to respect for patient autonomy. Furthermore, there are occasions when the very reference to post-treatment regret during medical decision-making is inappropriate. This, I suggest, is the case when the decision concerns a “personally transformative treatment”. This is a treatment that alters a person’s identity. Because the treatment is transformative, neither clinicians nor the patient him/herself can ascertain whether post-treatment regret will occur. Consequently, I suggest, what matters in determining whether to offer a personally transformative treatment is whether the patient has sufficiently good reasons for wanting the treatment at the time the decision is made. What does not matter is how the patient may subsequently be changed by undergoing the treatment. (shrink)

Unrepresented patients are some of the most vulnerable patients encountered in the healthcare system today. One of the challenges associated with healthcare for unrepresented patients is the lack of a standardized legal approach to decision making for this highly vulnerable population. Current statutory approaches vary widely without best practices or consensus guidelines. In 2016, Colorado passed a medical proxy law that established a process for the appointment of an independent physician to serve as a temporary proxy (...) decision maker for an unrepresented patient. Although this approach helps to identify a decision maker when no proxy is available, the appropriate standards for decision making remain uncertain. A peer-to-peer session at the Clinical Ethics Unconference in 2022 approached this conundrum with a focus on the best interests standard and the appropriate use of patients’ context in decision making. (shrink)

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

This study examines the processes ofdecision-making used by intensive care(critical care) specialists. Ninety-ninespecialists completed a questionnaire involvingthree clinical cases, using a novel methodologyinvestigating the role of uncertainty andtemporal-related factors, and exploring a rangeof ethical issues. Validation and triangulationof the results was done via a comparison studywith a medically lay, but highly informed groupof 37 law students. For both study groups,constructing reasons for a decision was largelyan interpretative and imaginative exercise thatwent beyond the data (as presented), commonlyresulting in different (...) reasons supporting thesame conclusions and similar reasons supportingopposite conclusions. The skills of ethicalimagination and interpretation were related toan individual''s prior lived experience,construed in the broadest sense. Application ofthese skills of ethical imagination andinterpretation always occurred, to some degree,in a state of uncertainty and almost alwaysinvolved temporal relationships.Using these results, a theory of ethicaldecision-making is proffered. Three levels ortypes of reasoning processes may be present.Type I decision-making involves the applicationof rules, usually in a deductive fashion. TypeII decision-making is characterised by aprocess where a plurality of reasons arebalanced, weighed and sifted with each other.Type III decision-making is intimately linkedwith respondents lived experiences and `crafts''the content of type I and II reasoningprocesses, via the application of ethicalimagination and interpretation. Relationshipsbetween these three types of reasoningprocesses, and with narrative ethics, are alsodiscussed. (shrink)

Participation in healthcare decision-making is considered to be an important right of minors, and is highlighted in both international legislation and public policies. However, despite the legal recognition of children’s rights to participation, and also the benefits that children experience by their involvement, there is evidence that legislation is not always translated into healthcare practice. There are a number of factors that may impact on the ability of the child to be involved in decisions regarding their medical (...) care. Some of these factors relate to the child, including their capacity to be actively involved in these decisions. Others relate to the family situation, sociocultural context, or the underlying beliefs and practices of the healthcare provider involved. In spite of these challenges to including children in decisions regarding their clinical care, we argue that it is an important factor in their treatment. The extent to which children should participate in this process should be determined on a case-by-case basis, taking all of the potential barriers into account. (shrink)

The question of whether old age should or should not play a role in medical decision-making for the elderly patient is regularly debated in ethics and medicine. In this paper we investigate exactly how age influences the decision-making process. To explore the normative argumentation in the decisions regarding an elderly patient we make use of the argumentation model advanced by Toulmin. By expanding the model in order to identify normative components in the argumentation (...) class='Hi'>process it is possible to analyse the way that age-related value judgements influence the medical decision-making process. We apply the model to practice descriptions made by medical students after they had attended consultations and meetings in medical practice during their clinical training. Our results show the pervasive character of age-related value judgements. They influence the physician’s decision in several ways and at several points in the decision-making process. Such explicit value judgements were not exclusively used for arguments against further diagnosis or treatment of older patients. We found no systematic “ageist” pattern in the clinical decisions by physicians. Since age plays such an important, yet hidden role in the medical decision-making process, we make a plea for revealing such normative argumentation in order to gain transparency and accountability in this process. An explicit deliberative approach will make the medical decision-making process more transparent and improve the physician–patient relationship, creating confidence and trust, which are at the heart of medical practice. (shrink)

BackgroundPrevious studies have found that the decision-making process for stored unused frozen embryos involves much emotional burden influenced by socio-cultural factors. This study aims to ascertain how Japanese patients make a decision on the fate of their frozen embryos: whether to continue storage discard or donate to research.MethodsTen Japanese women who continued storage, 5 who discarded and 16 who donated to research were recruited from our infertility clinic. Tape-recorded interviews were transcribed and analyzed for emergent themes.ResultsA (...) model of patients’ decision-making processes for the fate of frozen embryos was developed, with a common emergent theme, “coming to terms with infertility” resulting in either acceptance or postponing acceptance of their infertility. The model consisted of 5 steps: 1) the embryo-transfer moratorium was sustained, 2) the “Mottainai”- embryo and having another child were considered; 3) cost reasonability was taken into account; 4) partner’s opinion was confirmed to finally decide whether to continue or discontinue storage. Those discontinuing, then contemplated 5): the effect of donation. Great emotional conflict was expressed in the theme, steps 2, 4, and 5.ConclusionsPatients’ 5 step decision-making process for the fate of frozen embryos was profoundly affected by various Japanese cultural values and moral standards. At the end of their decision, patients used culturally inherent values and standards to come to terms with their infertility. While there is much philosophical discussion on the moral status of the embryo worldwide, this study, with actual views of patients who own them, will make a significant contribution to empirical ethics from the practical viewpoint. (shrink)

This article explores the question of how scientific uncertainty can be managed in medical decision making using the Advisory Committee on Immunization Practices as a case study. It concludes that where a high degree of technical consensus exists about the evidence and data, decision makers act according to a clear decision rule. If a high degree of technical consensus does not exist and uncertainty abounds, the decision will be based on a variety of criteria, (...) including readily available resources, decision-process constraints, and the available knowledge base, among other things. Decision makers employ a variety of heuristic devices and techniques, thereby employing a pragmatic approach to uncertainty in medical decision making. The article concludes with recommendations for managing scientific uncertainty in medical decision making. (shrink)

In the traditional fix-it model of medical decision making, the identified problem is typically characterized by a diagnosis that indicates a deviation from normalcy. When a medical problem is multifaceted and the available interventions are only partially effective, a broader vision of the health care endeavor is needed. What matters to the patient, and what should matter to the practitioner, is the patient's future possibilities. More specifically, what is important is the character of the alternative futures (...) that the patient could have and choosing among them so as to achieve the best future possible, with the ranking of outcomes determined by the patient's preferences. This paper describes the fix-it model, presents and defends the outcomes-based model, and demonstrates that the latter is useful in developing normative conceptions of informed consent and decision making and in establishing a basis for societal involvement in the decision making process. Finally, several shortcomings of the model will be acknowledged. (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)

We compare methods of aggregating repeated decisions from a single decision maker to improve medical image decision making using metacognitive processes (confidence judgments) and representational similarity from artificial neural networks for both novice and expert participants.

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.

Background: The increasing number of elderly people in nursing homes with failing competence to give consent represents a great challenge to healthcare staff’s protection of patient autonomy in the issues of life-prolonging treatment, hydration, nutrition and hospitalisation. The lack of national guidelines and internal routines can threaten the protection of patient autonomy. Objectives: To place focus on protecting patient autonomy in the decision-making process by studying how relatives experience their role as substitute decision-makers. Design: A qualitative (...) descriptive design with analysis of the contents of transcribed in-depth interviews with relatives. Participants: Fifteen relatives of 20 patients in 10 nursing homes in Norway. Results and Interpretations: The main findings reveal deficient procedures for including relatives in decision-making processes. Relatives have poor knowledge about the end of life, and there is little discussion about their role as substitute decision-makers for patients who are not competent to give consent. Few relatives understand the concept of patient autonomy. In Norway the treating physician is responsible for patient treatment. When relatives are included in discussions on treatment, they perceive themselves as responsible for the decision, which is a burden for them afterwards. This qualitative study describes relatives’ experiences, thus providing important information on the improvement potential with the main objective of safeguarding patient autonomy and caring for relatives. Conclusion: The study reveals failing procedures and thus a great potential for improvement. Both ethical and legal aspects must be addressed when considering patient autonomy. (shrink)

Nicholas Makins argues persuasively that medical decisions should be made with consideration for patients’ higher order risk attitudes.1 I will argue that an understanding of risk attitudes in medical decision-making is incomplete without critical engagement with emotions and affects (feelings associated with something good or bad). The primary aim of this commentary is to emphasise that clinical decisions are often emotionally charged, and it is crucial to engage closely with emotions and affects that shape these decisions, (...) particularly when navigating complex and uncertain situations. In the face of uncertainty, emotions such as fear, sadness or anxiety play a significant role in risk attitudes and medical decisions. I contend that recognising risk as a feeling is crucial to respecting patients’ values, preferences and decisions in light of the substantial body of research on risk perception and attitudes that suggests individuals make decisions based not only on what they think, but also on how they feel. In recent years, scholars have begun to acknowledge the value of emotions in understanding medical decisions and healthcare decision-making processes,2 especially under uncertainty. Furthermore, some philosophers and social scientists in field of risk research acknowledge emotions as both affective and cognitive in nature, and influence risk perceptions and attitudes.3 Risk …. (shrink)

In the United States, there is no consensus about who should make decisions in acute but non-emergent situations for incapacitated patients who lack surrogates. For more than a decade, our academic medical center has utilized community volunteers from the hospital ethics committee to engage in shared decision-making with the medical providers for these patients. In order to add a different point of view and minimize conflict of interest, the volunteers are non-clinicians who are not employed by (...) the hospital. Using case examples and interviews with the community members, this paper describes how the protocol has translated into practice over the years since its inception. Members reported comfort with the role as well as satisfaction with the thoroughness of their discussions with the medical team. They acknowledged feelings of moral uncertainty, but expressed confidence in the process. Questions raised by the experience are discussed. Overall, the protocol has provided oversight, transparency, and protection from conflict of interest to the decision-making process for this vulnerable patient population. (shrink)

In a collaborative work situation at a distance, the use of avatars to represent collaborators reduces collaborative effort. Also, animated avatars can help distant users to ground their relationship and facilitate their interaction because they materialise visual clues for the distant collaborators and their current activity. To check the validity of these hypotheses we set up an experiment based on the use of a collaborative virtual environment (CVE) synchronised for collective medical decision-making. Several teams of practitioners from (...) different disciplines will be required to deal with liver tumours displayed in Argonaute 3D. In this paper, we provide some evidence from existing studies for the hypotheses and select several measures to estimate the grounding process in CVEs. Next, we briefly describe the setup used to collect observable data with Argonaute 3D and we summarise first observations acquired with practitioners. (shrink)

There are two contrasting views on the decision-making for life-sustaining treatment in advanced stages of dementia when the patient is deemed incompetent. One is to respect the patient's precedent autonomy by adhering to advance directives or using the substituted judgement standard. The other is to use the best-interests standard, particularly if the current judgement on what is best for the incapacitated patient contradicts the instructions from the patient's precedent autonomy. In this paper, I argue that the protracted clinical (...) course of dementia over many years requires the extended perspective of a progressive decision-making process—extended in both social space and time. The ongoing debate between these two competing views has missed this perspective by focussing on an exclusive disjunction between the competent former self and the incompetent current self. Drawing on theories of situated cognition in cognitive science, I will show that the cognition of a demented patient can be viewed as extended and embodied by her supportive social environment. As the disease progresses, the content of the mind of a demented person becomes partially constituted by such external resources along with her diminishing intrinsic mind. With this understanding, medical decision-making for a demented patient can be construed as a temporally and socially extended practice. A collective decision-making body consisting of the patient, her family and surrogates, and the clinician, should make progressive decisions as a whole over years of the disease course. Finally, I will provide a practical example of how this proposal can be applied in clinical practice. (shrink)

The increased presence of medical AI in clinical use raises the ethical question which standard of explainability is required for an acceptable and responsible implementation of AI-based applications in medical contexts. In this paper, we elaborate on the emerging debate surrounding the standards of explainability for medical AI. For this, we first distinguish several goods explainability is usually considered to contribute to the use of AI in general, and medical AI in specific. Second, we propose to (...) understand the value of explainability relative to other available norms of explainable decision-making. Third, in pointing out that we usually accept heuristics and uses of bounded rationality for medical decision-making by physicians, we argue that the explainability of medical decisions should not be measured against an idealized diagnostic process, but according to practical considerations. We conclude, fourth, to resolve the issue of explainability-standards by relocating the issue to the AI’s certifiability and interpretability. (shrink)

In recent years geographic interest has focused increasingly on the moral and ethical dimensions of social constructions. Much of this work has followed the direction taken by moral philosophers whose principled approach has been applied to a range of ethically or morally problematic contexts. The challenge has been to apply a geographic perspective to an ethical dilemma that seems intractable at the level of ethical principle. This paper uses a geographic perspective to consider in a concrete fashion a current bioethical (...) concern: defining who will or will not be eligible for an organ transplant. Methodologically, it uses the analytic hierarchy process, a multicriterion decision making approach, and Q-analysis to analyze the resulting data. Long known by geographers, Q-analysis presents a methodology for the analysis of relations between two sets of criteria, in this case focus groups and their responses to a hierarchy of criteria. The result is a topology that not only presents but also explains the moral reasoning of members of a diverse set of focus groups constituted at a Canadian hospital to consider the question of organ transplant eligibility. (shrink)

In recent years geographic interest has focused increasingly on the moral and ethical dimensions of social constructions. Much of this work has followed the direction taken by moral philosophers whose principled approach has been applied to a range of ethically or morally problematic contexts. The challenge has been to apply a geographic perspective to an ethical dilemma that seems intractable at the level of ethical principle. This paper uses a geographic perspective to consider in a concrete fashion a current bioethical (...) concern: defining who will or will not be eligible for an organ transplant. Methodologically, it uses the analytic hierarchy process, a multicriterion decision making approach, and Q-analysis to analyze the resulting data. Long known by geographers, Q-analysis presents a methodology for the analysis of relations between two sets of criteria, in this case focus groups and their responses to a hierarchy of criteria. The result is a topology that not only presents but also explains the moral reasoning of members of a diverse set of focus groups constituted at a Canadian hospital to consider the question of organ transplant eligibility. (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)

This article focuses on patients' participation in decision‐making in meetings with healthcare professionals in a healthcare system, based on neoliberal regulations and ideas. Drawing on two constructed empirical cases, primarily from the perspective of patients, this article analyses and discusses the clinical practice around decision‐making meetings within a Foucauldian perspective. Patients' participation in decision‐making can be seen as an offshoot of respect for patient autonomy. A treatment must be chosen, when patients consult physicians. From (...) the perspective of patients, there is a tendency for healthcare professionals to supply the patients with the information that they think are necessary for them to make their own decision. But patients do not always want to be a ‘customer’ in the healthcare system; they want to be a patient, consulting an expert for help and advice, which creates resistance to some parts of the decision‐making process. Both professionals and patients are subject to the structural frame of the medical field, formed of both neoliberal framework and medical logic. The decision‐making competence in relation to the choice of treatment is placed away from the professionals and seen as belonging to the patient. A ‘projectification’ of the patient occurs, whereby the patient becomes responsible for his/her choices in treatment and care and the professionals support him/her with knowledge, preferences, and alternative views, out of which he/she must make his/her own choices, and the responsibility for those choices now and in the future. At the same time, there is a tendency towards de‐professionalization. In that light, participation of patients in decision‐making can be regarded as a tacit governmentality strategy that shapes the location of responsibility between individual and society, and independent patients and healthcare professionals, despite the basically desirable, appropriate, and necessary idea of involving patients in their own situations from a humanistic perspective. (shrink)

The Truth and Reconciliation Commission of Canada made it clear that understanding the historical, social, cultural, and political landscape that shapes the relationships between Indigenous peoples and social institutions, including the health care system, is crucial to achieving social justice. How to translate this recognition into more equitable health policy and practice remains a challenge. In particular, there is limited understanding of ways to respond to situations in which conventional practices mandated by the state and regulated by its legal apparatus (...) come into direct conflict with the values and autonomy of Indigenous individuals, communities, and nations. In this paper, we consider two cases of conflict between Indigenous and biomedical perspectives to clarify some of the competing values. We argue for the importance of person‐ and people‐centered approaches to health care. These value conflicts must be understood at multiple levels to clarify their personal, social, cultural, and political dimensions. Taking into account the divergence between epistemic cultures and communities allows us to understand the multiple narratives deployed in decision‐making processes in clinical, community, and juridical contexts. Recognizing the knowledge claims of Indigenous peoples in health care can help clinicians avoid reinforcing the divides created by the structural and institutional legacy of colonialism. This analysis also provides ways to adjudicate conflicts in health care decision‐making by disentangling cultural, political, medical, and pragmatic issues to allow for respectful dialogue. Insofar as the engagement with cultural pluralism in health care rights is conducted with reciprocal recognition, the medical community and Indigenous peoples can address together the difficult question of how to integrate different epistemic cultures in the health care system. (shrink)

Objective Routine prenatal screening for Down syndrome challenges professional non-directiveness and patient autonomy in daily clinical practices. This paper aims to describe how professionals negotiate their role when a pregnant woman asks them to become involved in the decision-making process implied by screening.Methods Forty-one semi-structured interviews were conducted with gynaecologists–obstetricians and midwives in a large Swiss city.Results Three professional profiles were constructed along a continuum that defines the relative distance or proximity towards patients’ demands for professional involvement (...) in the decision-making process. The first profile insists on enforcing patient responsibility, wherein the healthcare provider avoids any form of professional participation. A second profile defends the idea of a shared decision making between patients and professionals. The third highlights the intervening factors that justify professionals’ involvement in decisions.Conclusions These results illustrate various applications of the principle of autonomy and highlight the complexity of the doctor–patient relationship amidst medical decisions today. (shrink)

Following a Canadian Supreme Court ruling invalidating an absolute prohibition on physician assisted dying, two reports and several commentators have recommended that the Canadian criminal law allow medical assistance in dying (MAID) for persons with a diagnosis of mental disorder. A key element in this process is that the person requesting MAID be deemed to have the ‘mental capacity’ or ‘mental competence’ to consent to that option. In this context, mental capacity and mental competence refer to ‘decision- (...) class='Hi'>making capacity’, which is a distinct area of clinical study and research in the theory of informed consent. The purpose of this discussion is to bring several controversial but insufficiently acknowledged problems associated with decision-making capacity to the forefront of the proposed extension of MAID to persons diagnosed with mental disorders. Open-ended access to MAID by persons who suffer from mental health conditions already exists in Belgium and the Netherlands, where the issues raised here are equally relevant. In this paper, we highlight the serious limitations of relying on capacity assessments to allow access to MAID/Euthanasia. (shrink)

The use of artificial intelligence (AI) in healthcare comes with opportunities but also numerous challenges. A specific challenge that remains underexplored is the lack of clear and distinct definitions of the concepts used in and/or produced by these algorithms, and how their real world meaning is translated into machine language and vice versa, how their output is understood by the end user. This “semantic” black box adds to the “mathematical” black box present in many AI systems in which the underlying (...) “reasoning” process is often opaque. In this way, whereas it is often claimed that the use of AI in medical applications will deliver “objective” information, the true relevance or meaning to the end‐user is frequently obscured. This is highly problematic as AI devices are used not only for diagnostic and decision support by healthcare professionals, but also can be used to deliver information to patients, for example to create visual aids for use in shared decision‐making. This paper provides an examination of the range and extent of this problem and its implications, on the basis of cases from the field of intensive care nephrology. We explore how the problematic terminology used in human communication about the detection, diagnosis, treatment, and prognosis of concepts of intensive care nephrology becomes a much more complicated affair when deployed in the form of algorithmic automation, with implications extending throughout clinical care, affecting norms and practices long considered fundamental to good clinical care. (shrink)

Walton offers a comprehensive, flexible model for physician-patient decision making, the first such tool designed to be applied at the level of each particular case. Based on Aristotelian practical reasoning, it develops a method of reasonable dialogue, a question- and-answer process of interaction leading to informed consent on the part of the patient, and to a decision--mutually arrived at--reflecting both high medical standards and the patient's felt needs. After setting forth his model, he applies it (...) to three vital ethical issues: acts of omission, the cessation of treatment, and possible side effects of treatments. In the final chapter, Walton shows how his method functions in light of the real-life complexities of the clinical encounter and how it bears on ethical questions concerning health-care policy, attitudes toward treatment and toward the medical profession, reasonableness of expectations, and the setting of realistic goals of treatment. (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)

Objectives: To determine the effects of risk and payment on subjects’ willingness to participate, and to examine how payment influences subjects’ potential behaviours and risk evaluations.Methods: A 3 × 3 , between subjects, completely randomised factorial design was used. Students enrolled at one of five US pharmacy schools read a recruitment notice and informed consent form for a hypothetical study, and completed a questionnaire. Risk level was manipulated using recruitment notices and informed consent documents from hypothetical biomedical research projects. Payment (...) levels were determined using the payment models evaluated by Dickert and Grady as a guide. Five dependent variables were assessed in the questionnaire: willingness to participate, willingness to participate with no payment, propensity to neglect to tell about restricted activities, propensity to neglect to tell about negative effects, and risk rating.Results: Monetary payment had positive effects on respondents’ willingness to participate in research, regardless of the level of risk. However, higher monetary payments did not appear to blind respondents to the risks of a study. Payment had some influence on respondents’ potential behaviours regarding concealing information about restricted activities. However, payment did not appear to have a significant effect on respondents’ propensity to neglect to tell researchers about negative effects.Conclusions: Monetary payments appear to do what they are intended to do: make subjects more willing to participate in research. Concerns about payments blinding subjects to risks could not be substantiated in the present study. However, the findings do raise other concerns—notably the potential for payments to diminish the integrity of a study’s findings. Future research is critical to make sound decisions about the payment of research subjects. (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)

Following a Canadian Supreme Court ruling invalidating an absolute prohibition on physician assisted dying, two reports and several commentators have recommended that the Canadian criminal law allow medical assistance in dying (MAID) for persons with a diagnosis of mental disorder. A key element in this process is that the person requesting MAID be deemed to have the ‘mental capacity’ or ‘mental competence’ to consent to that option. In this context, mental capacity and mental competence refer to ‘decision- (...) class='Hi'>making capacity’, which is a distinct area of clinical study and research in the theory of informed consent. The purpose of this discussion is to bring several controversial but insufficiently acknowledged problems associated with decision-making capacity to the forefront of the proposed extension of MAID to persons diagnosed with mental disorders. Open-ended access to MAID by persons who suffer from mental health conditions already exists in Belgium and the Netherlands, where the issues raised here are equally relevant. In this paper, we highlight the serious limitations of relying on capacity assessments to allow access to MAID/Euthanasia. (shrink)

A review of medical ethics literature relating to the importance of the participation of patients in decision-making introduces the role of rights-based mediation as a voluntary process now being developed innovatively in America. This is discussed in relation to the theory of communicative ethics and moral personhood. References are then made to the work of medical ethics committees and the role of mediation within these. Finally it is suggested that mediation is part of an eirenic (...) ethic already being used informally in good patient care, and that there is a case for developing it further. (shrink)

The aim of this article is to explore the complex forms of knowledge involved in diagnostic and interventional decision making by comparing the processes in medicine and nursing, including nurse practitioners. Many authors assert that the practice of clinical decision making involves the application of theoretical knowledge (acquired in the classroom and textbooks) as well as research evidence, upon concrete particular cases. This approach draws on various universal principles and algorithms to facilitate the task. On the (...) other hand, others argue that this involves an intuitive form of judgement that is difficult to teach, one that is acquired principally through experience. In an exploration of these issues, this article consists of three sections. A clarification of terms commonly used when discussing decision making is provided in the first section. In the second section, an epistemological analysis of decision making is presented by examining several perspectives and comparing them for their use in the nursing and medical literature. Bunge's epistemological framework for decision making (based on scientific realism) is explored for its fit with the aims of medicine and nursing. The final section presents a discussion of knowledge utilization and decision making as it relates to the implications for the education and ongoing development of nurse practitioners. It is concluded that Donald Schön's conception of reflective practice best characterizes the skilful conduct of clinical decision making. (shrink)

Motivations and decision-making styles that influence participation in biomedical research vary across study types, cultures, and countries. While there is a small amount of literature on informed consent in non-western cultures, few studies have examined how participants make the decision to join research. This study was designed to identify the factors motivating people to participate in biomedical research in a traditional Nigerian community, assess the degree to which participants involve others in the decision-making process, (...) and examine issues of autonomy in decision-making for research. A descriptive cross-sectional study was conducted with 100 adults (50 men, 50 women) in an urban Nigerian community who had participated in a biomedical research study. Subjects were interviewed using a survey instrument.Two-thirds of the respondents reported participating in the biomedical study to learn more about their illness, while 30% hoped to get some medical care. Over three-quarters (78%) of participants discussed the enrolment decision with someone else and 39% reported obtaining permission from a spouse or family member to participate in the study. Women were more than twice as likely as men to report obtaining permission from someone else before participating. More specifically, half of the female participants reported seeking permission from a spouse before enrolling. The findings suggest that informed consent in this community is understood and practised as a relational activity that involves others in the decision making process. Further studies are needed in non-Western countries concerning autonomy, decision-making, and motivation to participate in research studies. (shrink)

It is now common in health care for a diverse range of professions and disciplines to work together in regular and close contact. Thus, there are now calls in the literature for research that documents insights on the ethical dimension of multidisciplinary relationships. Recent Australian research has responded to this call by examining how a multidisciplinary team of health professionals define and operationalize the notion of ethics in an acute ward hospital setting. This article provides findings from the research study (...) that indicate that, although there is a shared conceptualization of ethics as "patient-centered care", there can be times of conflict and tension in determining what is best for the patient. The discussion begins to build an understanding of how a multidisciplinary mix of health professionals responds to ethical conflict and tension. The authors' hope and expectation is that, by keeping the research focus on what health professionals in a multidisciplinary team (MDT) actually do, rather than exclusively on how they philosophically think about ethical dilemmas, the insights can be translated into practical strategies that can be utilized to strengthen the process of ethical decision making within the health care system. (shrink)

BackgroundIn most Anglophone nations, policy and law increasingly foster an autonomy-based model, raising issues for large numbers of people who fail to fit the paradigm, and indicating problems in translating practical and theoretical understandings of ‘good death’ to policy. Three exemplar populations are frail older people, people with dementia and people with severe traumatic brain injury. We hypothesise that these groups face some over-lapping challenges in securing good end-of-life care linked to their limited agency. To better understand these challenges, we (...) conducted a scoping review and thematic synthesis.MethodsTo capture a range of literature, we followed established scoping review methods. We then used thematic synthesis to describe the broad themes emerging from this literature.ResultsInitial searches generated 22,375 references, and screening yielded 49, highly heterogeneous, studies that met inclusion criteria, encompassing 12 countries and a variety of settings. The thematic synthesis identified three themes: the first concerned the processes of end-of-life decision-making, highlighting the ambiguity of the dominant shared decision-making process, wherein decisions are determined by families or doctors, sometimes explicitly marginalising the antecedent decisions of patients. Despite this marginalisation, however, the patient does play a role both as a social presence and as an active agent, by whose actions the decisions of those with authority are influenced. The second theme examined the tension between predominant notions of a good death as ‘natural’ and the drive to medicalise death through the lens of the experiences and actions of those faced with the actuality of death. The final theme considered the concept of antecedent end-of-life decision-making, its influence on policy and decision-making, and some caveats that arise from the studies.ConclusionsTogether these three themes indicate a number of directions for future research, which are likely to be applicable to other conditions that result in reduced agency. Above all, this review emphasises the need for new concepts and fresh approaches to end of life decision-making that address the needs of the growing population of frail older people, people with dementia and those with severe traumatic brain injury. (shrink)

Therapeutic privilege is a defence that may be available to doctors who fail to disclose to the patient relevant information when seeking informed consent for treatment if they have a reasonable belief that providing that information would likely cause the patient concerned serious physical or mental harm. In a landmark judgement, the Singapore Court of Appeal introduced a novel interpretation of TP, identifying circumstances in which it might be used with patients who did not strictly lack capacity but might be (...) inclined to refuse recommended treatments. In this paper, we explore the conceptual and practical challenges of this novel interpretation of TP. We propose that more emphasis should be placed on forms of shared and supported decision-making that foster the autonomy of patients with compromised mental capacity while being mindful of the need to safeguard their well-being. The kind of privilege that doctors might need to invoke is one of time and supportive expertise to ensure a flexible, responsive approach calibrated to the individual patients’ needs. The provision of such service would extinguish the need for the novel TP proposed by the Singapore Court of Appeal. (shrink)

Recently, bioethicists and the UNCRPD have advocated for supported medical decision-making on behalf of patients with intellectual disabilities. But what does supported decision-making really entail? One compelling framework is Anita Silvers and Leslie Francis’ mental prosthesis account, which envisions supported decision-making as a process in which trustees act as mere appendages for the patient’s will; the trustee provides the cognitive tools the patient requires to realize her conception of her own good. We (...) argue that supported decision-making would be better understood as a collaborative process, giving patients with intellectual disabilities the opportunity to make decisions in a respectful relationship with trusted others. We offer an alternative account of supported decision-making where the primary constraint is to protect the patient from domination by the trustee. This is advantageous in its preservation of the prospects for genuine collaboration, for the mental prosthesis approach ultimately reinforces a problematic ideal of isolated patient self-determination. (shrink)

Decision making is the physician's major activity. Every day, in doctors' offices throughout the world, patients describe their symptoms and com plaints while doctors perform examinations, order tests, and, on the basis of these data, decide what is wrong and what should be done. Although the process may appear routine-even to the physicians in volved-each step in the sequence requires skilled clinical judgment. Physicians must decide: which symptoms are important, whether any laboratory tests should be done, how (...) the various items of clinical data should be combined, and, finally, which of several treatments (including doing nothing) is indicated. Although much of the information used in clinical decision making is objective, the physician's values (a belief that pain relief is more important than potential addiction to pain-killing drugs, for example) and subjectivity are as much a part of the clinical process as the objective findings of laboratory tests. In recent years, both physicians and psychologists have come to realize that patient management decisions are not only subjective but also prob abilistic (although this is not always acknowledged overtly). When doc tors argue that an operation is fairly safe because it has a mortality rate of only 1 %, they are at least implicitly admitting that the outcome of their decision is based on probability. (shrink)