This article reviews the strengths and limitations of five major paradigms of medical computer-assisted decision making (CADM): (1) clinical algorithms, (2) statistical analysis of collections of patient data, (3) mathematical models of physical processes, (4) decision analysis, and (5) symbolic reasoning or artificial intelligence (Al). No one technique is best for all applications, and there is recent promising work which combines two or more established techniques. We emphasize both the inherent power of symbolic reasoning and the promise (...) of artificial intelligence and the other techniques to complement each other. Keywords: Diagnosis, Computer Assisted Decision Making, Artificial Intelligence * Current address: Intelligenetics, 124 University Avenue, Palo Alto, CA. 94301, U.S.A. ** Dr. Shortliffe is a Henry J. Kaiser Family Foundation Faculty Scholar in General Internal Medicine and recipient of research career development award LM0048 from the National Library of Medicine. CiteULike Connotea Del.icio.us What's this? (shrink)

Health care decision making for patients without decisional capacity is ethically and legally challenging. Advance directives (living wills) have proved to be of limited usefulness in clinical practice. Therefore, academic attention should focus more on substitute decision making by the next of kin. In this article, we comparatively analyse the legal approaches to substitute medical decision making in England and Germany. Based on the current ethico-legal discourse in both countries, three aspects of substitute (...) class='Hi'>decision making will be highlighted: (1) Should there be a legally predefined order of relatives who serve as health care proxies? (2) What should be the respective roles and decisional powers of patient-appointed versus court-appointed substitute decision-makers? (3) Which criteria should be determined by law to guide substitute decision-makers? (shrink)

Despite its virtues, lay decision-making in medicine shares with professional decision-making a disturbing common feature, reflected both in formal policies prohibiting high-risk research and in informal policies favoring treatment decisions made when a crisis or change of status occurs, often late in a downhill course. By discouraging patient decision-making but requiring dedication to the patient's interests by those who make decisions on the patient's behalf, such practices tend to preclude altruistic choice on the (...) part of the patient. This eclipse is to be regretted not just because widescale altruism has the capacity to provide important social goods and correct injustices in distribution, but for intrinsic reasons as well. It is argued that preserving the possibility of altruism obliges patients – and future patients – to make decisions about dying and other medical matters in advance, thus avoiding that displacement of decision-making onto lay and professional second parties which results in altruism's eclipse. Keywords: altruism, medical decision-making, patient's interest, self-interest, autonomy, death and dying decisions, refusal of treatment, prolongation of life, allowing to die, high-risk research CiteULike Connotea Del.icio.us What's this? (shrink)

This article reviews the strengths and limitations of five major paradigms of medical computer-assisted decision making (CADM): (1) clinical algorithms, (2) statistical analysis of collections of patient data, (3) mathematical models of physical processes, (4) decision analysis, and (5) symbolic reasoning or artificial intelligence (Al). No one technique is best for all applications, and there is recent promising work which combines two or more established techniques. We emphasize both the inherent power of symbolic reasoning and the promise (...) of artificial intelligence and the other techniques to complement each other. (shrink)

The failure of medical codes to provide adequate guidance for physicians' moral dilemmas points to the fact that some rules of analysis, informed by moral theory, are needed to assist in resolving perplexing ethical problems occurring with increasing frequency as medical technology advances. Initially, deontological and teleological theories appear more helpful, but critcisms can be lodged against both, and neither proves to be sufficient in itself. This paper suggests that to elude the limitations of previous approaches, a method of moral (...) decision making must be developed incorporating both coherence methodology and some independently supported theoretical foundations. Wide Reflective Equilibrium is offered, and its process described along with a theory of the person which is used to animate the process. Steps are outlined to be used in the process, leading to the application of the method to an actual case. (shrink)

Decision analysts sometimes use the results of clinical trials in order to evaluate treatment alternatives. I discuss some problems associated with this, and in particular I point out that it is not valid to use the estimates from clinical trials as the probabilities of events which are needed for decision analysis. I also attempt to show that an approach based on objective statistical theory may have advantages over commonly used methods based on decision theory. These advantages include (...) the recognition of uncertain data, the introduction of a third alternative, namely suspension of judgement, and the possibility of modifying the choice of probabilities based on a clinical trial with reference to other available knowledge. I have not, however, shown in detail how this modification is done, but I think the concept is sufficiently promising to be applied to an actual clinical decision problem. (shrink)

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

The computer revolution has had an enormous effect on all aspects of the practice of medicine, yet little thought has been given to the role of social media in identifying treatment choices for incompetent patients. We are currently living in the ?Internet age? and many people have integrated social media into all aspects of their lives. As use becomes more prevalent, and as users age, social media are more likely to be viewed as a source of information regarding medical (...) care preferences. This article explores the ethical and legal issues raised by the use of social media in surrogate decision making. (shrink)

Decision making is a crucial element in the field of medicine. The physician has to determine what is wrong with the patient and recommend treatment, while the patient has to decide whether or not to seek medical care, and go along with the treatment recommended by the physician. Health policy makers and health insurers have to decide what to promote, what to discourage, and what to pay for. Together, these decisions determine the quality of health care that (...) is provided. Decision Making in Health Care is an up-to-date, comprehensive overview of the field of medical decision making. It includes quantitative theoretical tools for modeling decisions, psychological research on how decisions are actually made, and applied research on how physician and patient decision making can be improved. (shrink)

The search for “usable” expert systems is leading somemedical researchers to question the appropriate role of these programs. Most current systems assume a limited role for the human user, delegating situated “decision-control” to the machine. As expert systems are only able to replace a narrow range of human intellectual functions, this leaves the programs unable to cope with the “constructivist” nature of human knowledge-use. In returning practical control to the human doctor, some researchers are abandoning focusedproblem-solving in favour of (...) supportiveproblem-analysis. Using ONCOCIN and QMR as examples, this article contrasts these approaches and suggests that the latter avoids many of the difficulties currently facing medical expert systems. (shrink)

In caring for pediatric patients, a multifaceted approach in decision-making is utilized. The role of the medical team in complementary and alternative medicine is controversial. In cases of conventional treatment refusal by parents in pursuit of complementary and alternative medicine, there must be balanced decision-making, autonomy, and the best interest of the child. This report highlights two illustrative cases of patients with brain tumor, whereby parents refused postoperative conventional therapy involving chemoradiotherapy, in pursuit of (...) complementary and alternative medicine alone. Parental decision-making in complementary and alternative medicine, in lieu of medical recommendations, poses an ethical and legal dilemma that may impede care of the pediatric patient and compromise outcome of oncological care. (shrink)

Zur patientenorientierten Behandlung bei nichteinwilligungsfähigen Patienten werden aktuell der Einbezug oder auch die Entscheidung durch ein Ethikkonsil oder klinisches Ethikkomitee (KEK) gefordert. Damit die Entscheidung des Entscheidungsträgers durch das KEK unterstützt werden kann, müssen Zuständigkeiten, Besetzung und Arbeitsweise des Gremiums klar umschrieben sein.

The issue of the allocation of resources in health care is here to stay. The goal of this study was to explore the views of physicians on several topics that have arisen in the debate on the allocation of scarce resources and to compare these with the views of policy makers. We asked physicians and policy makers to participate in an interview about their practices and opinions concerning factors playing a role in decision making for patients in different (...) age groups. Both physicians and policy makers recognised allocation decisions as part of their reality. One of the strong general opinions of both physicians and policy makers was the rejection of age discrimination. Making allocation decisions as such seemed to be regarded as a foreign entity to the practice of medicine. In spite of the reluctance to make allocation decisions, physicians sometimes do. This would seem to be only acceptable if it is justified in terms of the best interests of the patient from whom treatment is withheld. (shrink)

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 article will be concerned with the phenomenon of vitality, which emerged as one of the main findings in a larger grounded theory study about life and death decisions in hospitals' neonatal units. Definite signs showing the new-born infant's energy and vigour contributed to the clinician's judgements about life expectancy and the continuation or termination of medical treatment. In this paper we will discuss the normative importance of vitality as a diagnostic cue and will argue that vitality, as a sign (...) perceived by doctors and nurses, has moral significance and represents a legitimate contribution to clinical decision-making in difficult cases where the child's life is at stake. We will argue that these clinical intuitions can be justified on a moral basis but only with certain qualifications that accounts for a certain objectivity and intersubjective reliability in the therapeutic judgements. (shrink)

BackgroundSystems medicine is the name for an assemblage of scientific strategies and practices that include bioinformatics approaches to human biology ; “big data” statistical analysis; and medical informatics tools. Whereas personalized and precision medicine involve similar analytical methods applied to genomic and medical record data, systems medicine draws on these as well as other sources of data. Given this distinction, the clinical translation of systems medicine poses a number of important ethical and epistemological challenges for researchers (...) working to generate systems medicine knowledge and clinicians working to apply it.DiscussionThis article focuses on three key challenges: First, we will discuss the conflicts in decision-making that can arise when healthcare providers committed to principles of experimental medicine or evidence-based medicine encounter individualized recommendations derived from computer algorithms. We will explore in particular whether controlled experiments, such as comparative effectiveness trials, should mediate the translation of systems medicine, or if instead individualized findings generated through “big data” approaches can be applied directly in clinical decision-making. Second, we will examine the case of the Riyadh Intensive Care Program Mortality Prediction Algorithm, pejoratively referred to as the “death computer,” to demonstrate the ethical challenges that can arise when big-data-driven scoring systems are applied in clinical contexts. We argue that the uncritical use of predictive clinical algorithms, including those envisioned for systems medicine, challenge basic understandings of the doctor-patient relationship. Third, we will build on the recent discourse on secondary findings in genomics and imaging to draw attention to the important implications of secondary findings derived from the joint analysis of data from diverse sources, including data recorded by patients in an attempt to realize their “quantified self.”SummaryThis paper examines possible ethical challenges that are likely to be raised as systems medicine to be translated into clinical medicine. These include the epistemological challenges for clinical decision-making, the use of scoring systems optimized by big data techniques and the risk that incidental and secondary findings will significantly increase. While some ethical implications remain still hypothetical we should use the opportunity to prospectively identify challenges to avoid making foreseeable mistakes when systems medicine inevitably arrives in routine care. (shrink)

First responders to chemical, biological, radiological, or nuclear (CBRN) events face decisions having significant human consequences. Some operational decisions are supported by standard operating procedures, yet these may not suffice for ethical decisions. Responders will be forced to weigh their options, factoring-in contextual peculiarities; they will require guidance on how they can approach novel (indeed unique) ethical problems: they need strategies for “on the spot” ethical decision making. The primary aim of this paper is to examine how first (...) responders should approach on the spot ethical decision-making amid the stress and uncertainty of a CBRN event. Drawing on the long-term professional CBRN experience of one of the authors, this paper sets out a series of practical ethical dilemmas potentially arising in the context of a large-scale chemical incident. We propose a broadly consequentialist approach to on the spot ethical decision-making, but one which incorporates ethical values and rights as “side-constraints”. (shrink)

Teacher emotion has become an important issue in English language teaching as it is a crucial construct in understanding teachers' responses to institutional policies. The study explored teachers' emotion labor and its impact on teachers' pedagogical decision-making in English for Specific Purposes teaching in a university of Traditional Chinese Medicine in China. Drawing on a poststructural perspective, the study examined data from two rounds of semi-structured interviews, policy documents and teaching artifacts. The analysis of data revealed that (...) the major emotion labor facing the participants revolved around students' disengagement in class. Teachers experienced mixed feelings of anticipation, disappointment, anger, and empathy toward students and distanced themselves from institutional feeling rules enforcing objective assessment of students' performance and punishing students for lack of engagement in class. The study found that teacher emotion labor served as the site for their pedagogical modifications. ESP teachers' beliefs in the importance of attending to students' needs become a powerful discourse in supporting teachers to strategically subvert institutional feeling rules and critically reflect on the dysfunctions of curriculum, orienting teachers' agentic actions in modifying pedagogical practices. We thus underscore this empowering discourse as the bridge to connect teachers' policy negotiation and their actual classroom practices. We also highlight teachers' pedagogical decision-making as a process of the interactions of teacher emotion, teachers' reflexive practices, and power relations. The study ended by suggesting more longitudinal research where teachers' beliefs as previously appropriated discourses could be examined comprehensively as they were both the construct of emotion labor and the potential subverting power in supporting teachers' pedagogical decision-making in policy negotiation. (shrink)

The principle of autonomy presupposes Patient Decision Making Competence (PDMC). For a few decades a considerable amount of empirical research has been done into PDMC. In this contribution that research is explored. After a short exposition on four qualities involved in PDMC, different approaches to assess PDMC are distinguished, namely a negative and a positive one. In the negative approach the focus is on identifying psychopathologic conditions that impair sound decision making; the positive one attempts to (...) assess whether a patient actually has the required abilities and qualities. Characteristic of the latter approach is the use of (or development of) test-like instruments for PDMC assessment. Some of these tests are discussed and commented on. Although they may be useful in investigating aspects of PDMC, none of the described approaches and tests offers a reliable and valid method for PDMC assessment. In response to a potential misuse of tests, the concept of a supportive situation is briefly introduced in order to draw attention to the risk of prematurely deeming patients incompetent on the basis of low test scores, whereas their insufficient performance may be (partly) attributable to alack of situational support. Also, the need for and possibility of an emotionalist concept of PDMC are suggested, as an alternative to the more common rationalist one. In this regard,the legitimacy of competence being conceived as a presumption or fiction of law, deserves further investigation. (shrink)

Background Non-invasive prenatal testing (NIPT), which can screen for aneuploidies such as trisomy 21, is being implemented in several public healthcare systems across Europe. Comprehensive communication and information have been highlighted in the literature as important elements in supporting women’s reproductive decision-making and addressing relevant ethical concerns such as routinisation. Countries such as England and France are adopting broadly similar implementation models, offering NIPT for pregnancies with high aneuploidy probability. However, we do not have a deeper understanding of (...) how professionals’ counselling values and practices may differ between these contexts. Methods In this paper, we explore how professionals in England and France support patient decision-making in the provision of NIPT and critically compare professional practices and values. We draw on data from semi-structured interviews with healthcare professionals. Results Both English and French professionals emphasised values relating to patient choice and consent. However, understandings and application of these values into the practice of NIPT provision differed. English interviewees placed a stronger emphasis on interpreting and describing the process of counselling patients and clinical care through a “principle” lens. Their focus was on non-directiveness, standardisation, and the healthcare professional as “decision-facilitator” for patients. French interviewees described their approach through a “procedural” lens. Their focus was on formal consent, information, and the healthcare professional as “information-giver”. Both English and French professionals indicated that insufficient resources were a key barrier in effectively translating their values into practice. Conclusion Our findings illustrate that supporting patient choice in the provision of NIPT may be held as an important value in common on a surface level, but can be understood and translated into practice in different ways. Our findings can guide further research and beneficially inform practice and policy around NIPT provision. (shrink)

Critical care of neonatesThe recently published report of the Nuffield Council on Bioethics, Critical care decisions in fetal and neonatal medicine, is a valuable contribution to the discussion of decision making in the critical care of neonates. Drawing upon medical evidence, the working party highlights the many practical difficulties arising in neonatal care and by setting out clearly the nature of the ethical and other issues arising in this area of medicine, and their relationship with neonatal (...) development, the resulting report has the potential to lead both to improved practice and to better informed communication between doctors and families when they face difficult decisions about how best to treat very premature babies. Based on medical evidence, the working party sets out guidelines on decision-making about the resuscitation of babies born before the gestational age of 25 weeks and 6 days, dividing this period into four chronological periods: before 21 weeks and 6 days when resuscitation should normally only take place within the context of a research project; between 22 weeks and 23 weeks when resuscitation should not normally be carried out unless the parents request it; at 23 or 24 weeks when parental views should take precedence; and, after 24 weeks when resuscitation should be the norm unless not in the child’s best interests.There are several practical ethical difficulties with this aspect of the advice. To what extent, for example, does the paediatric assessment of the child, intended to play a role in decision-making about the appropriateness of resuscitation, itself depend on the initiation of resuscitation? To what extent is it reasonable and humane to expect parents to take full responsibility for making decisions about resuscitation between 23 and 24 weeks? On what grounds is it acceptable to attempt to resuscitate a baby <21 weeks and 6 …. (shrink)

The evidence-based practice and evidence-based medicine movements have promoted standardization through guideline development methodologies based on systematic reviews and meta-analyses of best available research. EBM has challenged clinicians to question their reliance on practical reasoning and clinical judgement. In this paper, we argue that the protagonists of EBM position their mission as reducing uncertainty through the use of standardized methods for knowledge evaluation and use. With this drive towards uniformity, standardization and control comes a suspicion towards intuition, creativity and (...) uncertainty as integral parts of medical practice. We question the appropriateness of attempts to standardize professional practice through a discussion of the importance of uncertainty. Greenhalgh’s taxonomy of uncertainty is used to inform an analysis of the clinical reasoning occurring in a potentially life threatening emergency situation with a young patient. The case analysis is further developed by the use of the Canadian philosopher Bernard Lonergan’s theory about understanding and objective knowing. According to Lonergan it is not by getting rid of or even by reducing uncertainty, but by attending systematically to it and by relating to it in a self-conscious way, that objective knowledge can be obtained. The paper concludes that uncertainty is not a regrettable and unavoidable aspect of decision making but a productive component of clinical reasoning. (shrink)

BackgroundCommentators believe that the ethical decision-making climate is instrumental in enhancing interprofessional collaboration in intensive care units. Our aim was twofold: to determine the perception of the ethical climate, levels of moral distress, and intention to leave one's job among nurses and physicians, and between the different ICU types and determine the association between the ethical climate, moral distress, and intention to leave.MethodsWe performed a cross-sectional questionnaire study between May 2021 and August 2021 involving 206 nurses and physicians (...) in a large urban academic hospital. We used the validated Ethical Decision-Making Climate Questionnaire and the Measure of Moral Distress for Healthcare Professionals tools and asked respondents their intention to leave their jobs. We also made comparisons between the different ICU types. We used Pearson's correlation coefficient to identify statistically significant associations between the Ethical Climate, Moral Distress, and Intention to Leave.ResultsNurses perceived the ethical climate for decision-making as less favorable than physicians. They also had significantly greater levels of moral distress and higher intention to leave their job rates than physicians. Regarding the ICU types, the Neonatal/pediatric unit had a significantly higher overall ethical climate score than the Medical and Surgical units and also demonstrated lower moral distress scores and lower “intention to leave” scores compared with both the Medical and Surgical units. The ethical climate and moral distress scores were negatively correlated ; moral distress and "intention to leave" was positively correlated ; and ethical climate and “intention to leave” were negatively correlated.ConclusionsSignificant differences exist in the perception of the ethical climate, levels of moral distress, and intention to leave between nurses and physicians and between the different ICU types. Inspecting the individual factors of the ethical climate and moral distress tools can help hospital leadership target organizational factors that improve interprofessional collaboration, lessening moral distress, decreasing turnover, and improved patient care. (shrink)

"A CRC title, part of the Taylor & Francis imprint, a member of the Taylor & Francis Group, the academic division of T&F Informa plc.".

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)

Whereas evidence-based medicine (EBM) encourages the translation of medical research into decision-making through clinical practice guidelines (CPGs), patient-centred care (PCC) aims to integrate patient values through shared decision-making. In order to successfully integrate EBM and PCC, I propose a method of orienting physician decision-making to overcome the different obligations set out by a formally-rational EBM and substantively-rational ethics of care. I engage with Weber’s concepts “the ethic of responsibility” andverstehenas a new model of (...) clinical reasoning that reformulates the relationship between medical knowledge and social values, while demonstrating the relevance of the classical sociological cannon to contemporary medical humanities. (shrink)

" Journal of the American Medical Association "Walton has made a successful attempt to write about medical concerns without ever leaving the layperson to ...

Over the past decades, great strides have been made to professionalize and increase access to transgender medicine. As the evidence base grows and conceptualizations regarding gender dysphoria/gender incongruence evolve, so too do ideas regarding what constitutes good treatment and decision-making in transgender healthcare. Against this background, differing care models arose, including the ‘Standards of Care’ and the so-called ‘Informed Consent Model’. In these care models, ethical notions and principles such as ‘decision-making’ and ‘autonomy’ are often (...) referred to, but left unsubstantiated. This not only transpires into the consultation room where stakeholders are confronted with many different ethical challenges in decision-making, but also hampers a more explicit discussion of what good decision-making in transgender medicine should be comprised of. The aim of this paper is to make explicit the conceptual and normative assumptions regarding decision-making and client autonomy underpinning the ‘Standards of Care’ and ‘Informed Consent Model’ currently used in transgender care. Furthermore, we illustrate how this elucidation aids in better understanding stakeholders’ ethical challenges related to decision-making. Our ethical analysis lays bare how distinct normative ambiguities in both care models influence decision-making in practice and how foregrounding one normative model for decision-making is no moral panacea. We suggest that the first steps towards good decision-making in gender-affirming medical care are the acknowledgement of its inherent normative and moral dimensions and a shared, dialogical approach towards the decision-making process. (shrink)

One of the main challenges in medicine is to guarantee an appropriate drug supply according to the real needs of patients. Closed-loop strategies have been widely used to develop automatic solutions based on feedback variables. However, when the variable of interest cannot be directly measured or there is a lack of knowledge behind the process, it turns into a difficult issue to solve. In this research, a novel algorithm to approach this problem is presented. The main objective of this (...) study is to provide a new general algorithm capable of determining the influence of a certain clinical variable in the decision making process for drug supply and then defining an automatic system able to guide the process considering this information. Thus, this new technique will provide a way to validate a given physiological signal as a feedback variable for drug titration. In addition, the result of the algorithm in terms of fuzzy rules and membership functions will define a fuzzy-based decision system for the drug delivery process. The method proposed is based on a Fuzzy Inference System whose structure is obtained through a decision tree algorithm. A four-step methodology is then developed: data collection, preprocessing, Fuzzy Inference System generation, and the validation of results. To test this methodology, the analgesia control scenario was analysed. Specifically, the viability of the Analgesia Nociception Index as a guiding variable for the analgesic process during surgical interventions was studied. Real data was obtained from fifteen patients undergoing cholecystectomy surgery. (shrink)

Informed decision-making (IDM) is considered an important ethical and legal requirement for population-based screening. Governments offering such screening have a duty to enable invitees to make informed decisions regarding participation. Various views exist on how to define and measure IDM in different screening programmes. In this paper we first address the question which components should be part of IDM in the context of cancer screening. Departing from two diverging interpretations of the value of autonomy—as a right and as (...) an ideal—we describe how this value is operationalized in the practice of informed consent in medicine and translate this to IDM in population-based cancer screening. Next, we specify components of IDM, which is voluntariness and the requirements of disclosure and understanding. We argue that whereas disclosure should contain all information considered relevant in order to enable authentic IDM, understanding of basic information is sufficient for a valid IDM. In the second part of the paper we apply the capability approach in order to argue for the responsibility of the government to warrant equal and real opportunities for invitees for IDM. We argue that additional conditions beyond mere provision of information are needed in order to do so. (shrink)

Qualitative evidence concerning the relationship between QoL and a wide range of disabilities suggests that subjective judgments regarding other people’s QoL are wrong more often than not and that such judgments by medical practitioners in particular can be biased. Guided by their desire to do good and avoid harm, surgeons often rely on "the eyeball test" to decide whether a patient will or will not benefit from surgery. But the eyeball test can easily harbor a range of implicit judgments and (...) biases against patients with disabilities, including erroneous assumptions about QoL. We critique the use of the "eyeball" test and offer suggestions to reduce bias and ensure that patients’ values are more consistently prioritized in surgical decision-making. (shrink)

Public health decisions made by the state involve considerable disagreements on the course of actions, uncertainties, and compromises that arise from moral tensions between the demands of civil liberties and the goals of public health. With such complex decisions, it can be extremely difficult to arrive at and justify the best option. In this article, we propose an ethical decision-making framework based on the philosophy of Ubuntu and argue that in sub-Saharan African settings, this approach provides attractive alternative (...) conventions of moral decision-making and a useful language for understanding moral reasoning and ethics. Through its emphasis on humanity, compassion, and social responsibility, Ubuntu (“I am because we are”) has the potential to facilitate solutions to and avert conflicts between individual rights and public health. The use of Ubuntu shifts the moral reasoning and ethics of decision-making from a field of philosophy shaped by the global north, to the everyday values, decision-making, and consequent practices of people in much of Africa. Using examples of Ebola, pandemic influenza, and tuberculosis, we illustrate how Ubuntu can be applied to tackle conflicting ethical problems in public health and medicine. (shrink)

In this paper we explore the relation between health-care needs and patients’ desires within shared decision-making in a context of priority setting in health care. We begin by outlining some general characteristics of the concept of health-care need as well as the notions of SDM and desire. Secondly we will discuss how to distinguish between needs and desires for health care. Thirdly we present three cases which all aim to bring out and discuss a number of queries which (...) seem to arise due to the double focus on a patient’s need and what that patient desires. These queries regard the following themes: the objectivity and moral force of needs, the prediction about what kind of patients which will appear on a micro level, implications for ranking in priority setting, difficulties regarding assessing and comparing benefits, and implications for evidence-based medicine. (shrink)

Examples of patients with anorexia nervosa, depression or borderline personality disorder who have decision-making capacity as currently operationalized, but refuse treatment, are discussed. It appears counterintuitive to respect their treatment refusal because their wish seems to be fuelled by their illness and the consequences of their refusal of treatment are severe. Some proposed solutions have focused on broadening the criteria for decision-making capacity, either in general or for specific patient groups, but these adjustments might discriminate against (...) particular groups of patients and render the process less transparent. Other solutions focus on preferences expressed when patients are not ill, but this information is often not available. The reason for such difficulties with assessing decision-making capacity is that the underlying psychological processes of normal decision-making are not well known and one cannot differentiate between unwise decisions caused by an illness or other factors. The proposed alternative, set out in this paper, is to allow compulsory treatment of patients with decision-making capacity in cases of an emergency, if the refusal is potentially life threatening, but only for a time-limited period. The argument is also made for investigating hindsight agreement, in particular after compulsory measures. -/- . (shrink)

Advances in psychopharmacology raise the prospects of enhancing neurocognitive functions of humans by improving attention, memory, or mood. While general ethical reflections on psychopharmacological enhancement have been increasingly published in the last years, ethical criteria characterizing physicians’ role in neurocognitive enhancement and guiding their decision-making still remain highly unclear. Here it will be argued that also in the medical domain the use of cognition-enhancing drugs is not intrinsically unethical and that, in fact, physicians should assume an important role (...) in gating their usage. For finding normative orientation, concepts of disease, normality or medicine will not be helpful since—due to their cryptonormative nature—they rather hamper than allow targeted discussion and decision-making. As an alternative, the common and widely accepted bioethical criteria of beneficence, non-maleficence, autonomy and distributive justice allow a clinically applicable, highly differentiated context- and case-sensitive approach. By embedding decision-making in a participative physician–patient relationship extrinsic objections against neurocognitive enhancement (e.g. invalid perceptions about efficacy, benefit or risk; questionable voluntariness; restrained decision-making capacity) can be curtailed. (shrink)

Medical practitioners owe much of the significant progress made in the diagnosis and treatment of disease to industrial research. Hence, co-operation between providers of medical services, most notably medical practitioners, and the pharmaceutical industry is in the best interest of patients. Yet, empirical evidence shows how well-directed influence exerted by the pharmaceutical industry impacts physicians’ decision-making. Profit-motivated inducement by the pharmaceutical industry may expose patients to considerable risks. Against what many think to be based on overwhelming evidence, Joao (...) Calinas-Correia takes the view that the criticism levelled at the pharmaceutical industry as well as the call for transparency in the relationships between physicians and the industry are exaggerated. In his polemic he praises “Big Pharma” as a success and espouses the view that the undesired consequences of its activities are allegedly inherent in the underlying market environment shaped by politics. Moreover, he believes that the proposals made to control and eliminate such undesired effects will lead to mediocrity. Astonishingly, his polemic reaches out to contest the appropriateness of setting rules at all—even if being set by a democratic process. Calinas-Correia’s assertions are based on the wrong premises. They fail to recognize that today individual civil rights and liberties often enough do not have to be defended against encroachments by governmental authorities. Rather, it is incumbent on the state to create rules designed to defend the individual against infringements by overly powerful non-governmental institutions, in our case the medical-industrial complex. Given the power exercised by physicians and the special nature of their role in public health, clear-cut rules have to be enacted and implemented with respect to their relationship to Big Pharma. (shrink)

BackgroundIn gender-affirming medical care (GAMC), ethical challenges in decision-making are ubiquitous. These challenges are becoming more pressing due to exponentially increasing referrals, politico-legal contestation, and divergent normative views regarding decisional roles and models. Little is known, however, about what ethical challenges related to decision-making healthcare professionals (HCPs) themselves face in their daily work in GAMC and how these relate to, for example, the subjective nature of Gender Incongruence (GI), the multidisciplinary character of GAMC and the role (...) HCPs play in assessing GI and eligibility for interventions. Given the relevance and urgency of these questions, we conducted a qualitative study among HCPs providing GAMC to transgender adults in the Netherlands.MethodsIn this qualitative research, we conducted 11 semi-structured interviews between May 2020 and February 2021 with HCPs (six mental health professionals, two HCPs in endocrinology, two in plastic surgery, and one in nursing) working in two distinct GAMC settings. We purposively sampled for professional background and years of experience in GAMC. We analyzed our interview data using thematic analysis. As some respondents were more inclined to speak about what should or ought to be done to arrive at good or right decision-making, we identified both ethical challenges and norms. Furthermore, in our analysis, we differentiated between respondents’ explicit and implicit ethical challenges and norms and ascertained the specific context in which these challenges emerged.ResultsRespondents’ ethical challenges and norms centered on (1) dividing and defining decisional roles and bounds, (2) negotiating decision-making in a (multidisciplinary) team, and (3) navigating various decision-making temporalities. These themes arose in the context of uncertainties regarding (1) GAMC’s guidelines, evidence, and outcomes, as well as (2) the boundaries and assessment of GI.ConclusionsThis interview study provides detailed empirical insight into both the explicit and implicit ethical challenges that HCPs experience and their ethical norms regarding decision-making. It also describes how uncertainties and (implicit) normativities concerning GAMC and GI pre-structure the moral environment in which these challenges and norms manifest. We provide normative reflections and recommendations on handling these ethical challenges in a way that is sensitive to the context in which they arise. (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)

Although people who endorse conspiracy theories related to medicine often have negative attitudes toward particular health care measures and may even shun the healthcare system in general, conspiracy theories have received rather meager attention in bioethics literature. Consequently, and given that conspiracy theorizing appears rather prevalent, it has been maintained that there is significant need for bioethics debate over how to deal with conspiracy theories. While the proposals have typically focused on the effects that unwarranted conspiracy theories have in (...) the public health context, Nathan Stout's recent argument concentrates on the impacts that such theories have at the individual level of clinical decision‐making. In this article, I maintain that duly acknowledging the impacts of conspiracy theories that raise Stout's concern does not require bioethics debate over the proper response to the influence of conspiracy theories in healthcare. Having evaluated two possible objections, I conclude by briefly clarifying the purported import of the response to Stout. (shrink)

There are marked differences between countries with regard to reimbursement decision-making, yet few studies have tried to understand this process and its consequences by a detailed analysis of the local context and decision-making structure. This article describes reimbursement decision-making and subsequent prescribing patterns of new pharmaceuticals by means of a case study on glitazones in treatment of type 2 diabetes mellitus patients in Denmark. The study shows that institutional arrangements, providing the context in which (...) evidence is used, are highly important for understanding the reimbursement decision-making process. In particular the Danish Medicines Agency (DMA) has shaped the decision to reimburse glitazones on the basis of physician-mediated requests of individual patients. Relatively few patients have been prescribed glitazones since their introduction in 2000, suggesting that individual reimbursement may be an effective instrument in controlling overall expenditure of selected pharmaceuticals, although in the case of glitazones this has likely been achieved at the expense of equality in access to the products. The discussion focuses on the generalizability of the findings to both other pharmaceuticals in the individual reimbursement scheme in Denmark, and to other countries that are trying to balance the need to control overall pharmaceutical care expenditure with the need to secure equality in access to new drugs with therapeutic added value. (shrink)