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)

As the United States population ages, there is a growing group of aging, elderly, individuals who may consider "preemptive suicide"(Prado, 1998). Healthy aging patients who preemptively attempt to end their life by suicide and who have clearly expressed a desire not to have life -sustaining treatment present a clinical and public policy challenge. We describe the clinical, ethical, and medical-legal decision making issues that were raised in such a case that presented to an academic emergency department. We also (...) review and evaluate a decision making process that emergency physicians confront when faced with such a challenging and unusual situation. (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)

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)

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

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)

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)

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)

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)

Complementary and alternative medicine is used by many in hopes of achieving important health-related goals. Survey data indicate that 42 percent of the U.S. population uses CAM, accounting for 629 million “office” visits a year and expenditures of 27 billion dollars. This high prevalence of use calls for a careful evaluation of CAM so as to ensure the well-being of those using its modalities. Such an evaluation would obviously include assessments of the safety and efficacy of particular approaches, the (...) training and integrity of practitioners, and the appropriateness of modalities for different conditions or uses. Given the lack of published data concerning many of these aspects of CAM, the likely unfamiliarity of its practitioners to the approaches available to clinicians practicing modern scientific medcine, and the need to respect the unique preferences of persons seeking assistance with achieving health-related goals, it is also important to assess the potential roles of informed consent for the use of CAM. Examining such roles is the central task of this paper. (shrink)

Complementary and alternative medicine is used by many in hopes of achieving important health-related goals. Survey data indicate that 42 percent of the U.S. population uses CAM, accounting for 629 million “office” visits a year and expenditures of 27 billion dollars. This high prevalence of use calls for a careful evaluation of CAM so as to ensure the well-being of those using its modalities. Such an evaluation would obviously include assessments of the safety and efficacy of particular approaches, the (...) training and integrity of practitioners, and the appropriateness of modalities for different conditions or uses. Given the lack of published data concerning many of these aspects of CAM, the likely unfamiliarity of its practitioners to the approaches available to clinicians practicing modern scientific medcine, and the need to respect the unique preferences of persons seeking assistance with achieving health-related goals, it is also important to assess the potential roles of informed consent for the use of CAM. Examining such roles is the central task of this paper. (shrink)

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

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)

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)

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)

Decision-making depends on bringing evidence together with values: decision theory for example employs probabilities and utilities; health economic decisions employ measures such as quality of life. The hypothesis guiding this chapter is that bringing evidence together with values in clinical decision-making requires an exercise of phronesis. Our aim however is not to justify our guiding hypothesis. It is rather to outline an account of phronesis that is in principle fit for the purposes of clinical (...) class='Hi'>decision-making if our guiding hypothesis is correct. The chapter has three sections. Section 1 describes the growing gap between evidence and values in clinical decision-making: the missing link, we suggest, required to bridge this gap, is an appropriate account of phronesis. Section 2 provides an initial characterisation of the required account of phronesis via Michael Polanyi’s twin stipulation on the nature of tacit knowledge. Section 3 then fills out the required account using John McDowell’s characterisation of phronesis as a situation specific but at the same time conceptually structured form of practical discernment. A McDowellian account of phronesis, we argue, in satisfying Polanyi’s twin stipulation, provides an in-principle bridge between evidence and values. We conclude with a note on some of the further requirements if the gap is to be bridged not only in principle but in practice too. (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)

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

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)

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)

Decision-making capacity is the gatekeeping element for a patient’s right to self-determination with regard to medical decisions. A DMC evaluation is not only conducted on descriptive grounds but is an inherently normative task including ethical reasoning. Therefore, it is dependent to a considerable extent on the values held by the clinicians involved in the DMC evaluation. Dealing with the question of how to reasonably support clinicians in arriving at a DMC judgment, a new tool is presented that fundamentally (...) differs from existing ones: the U-Doc. By putting greater emphasis on the judgmental process rather than on the measurement of mental abilities, the clinician as a decision-maker is brought into focus, rendering the tool more of an evaluation guide than a test instrument. In a qualitative study, the perceived benefits of and difficulties with the tool have been explored. The findings show on the one hand that the evaluation aid provides basic orientation, supports a holistic perspective on the patient, sensitizes for ethical considerations and personal biases, and helps to think through the decision, to argue, and to justify one’s judgment. On the other hand, the room for interpretation due to absent operationalisations, related ambiguities, and the confrontation with one’s own subjectivity may be experienced as unsettling. (shrink)

It has recently been proposed to incorporate the use of a “Patient Preference Predictor” (PPP) into the process of making treatment decisions for incapacitated patients. A PPP would predict which treatment option a given incapacitated patient would most likely prefer, based on the individual’s characteristics and information on what treatment preferences are correlated with these characteristics. Including a PPP in the shared decision-making process between clinicians and surrogates has the potential to better realize important ethical goals for (...) making treatment decisions for incapacitated patients. However, developing and implementing a PPP poses significant practical challenges. The present paper discusses these practical challenges and considers ways to address them. (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)

Aristotle’s ethical system was guided by his vision of human flourishing (also, but potentially misleadingly, translated as happiness). For Aristotle, human flourishing was a rich holistic concept about a life lived well until its ending. Both living a long life and dying well were integral to the Aristotelian ideal of human flourishing. Using Aristotle’s concept of human flourishing to inform the goals of medicine has the potential to provide guidance to clinical decision-makers regarding the provision of burdensome treatments, (...) such as intensive care treatment, where pursuing a chance of survival must be balanced against the risk of exposing patients to a negative dying experience. By conceptually uniting potentially competing goals of medicine, such as prolonging life and the promotion of peaceful deaths, Aristotle’s understanding of human flourishing creates an argument for the integration of palliative care considerations into intensive care decision-making and for advanced care planning with healthy patients. (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)

Medicine is incorporating genetic services into all avenues of health‐care, ranging from the rarest to the most common diseases. Cognitive theories of decision‐making still dominate professionals’ understanding of patient decision‐making about how to use genetic information and whether to have testing. I discovered a conceptual model of decision‐making while carrying out a phenomenological‐hermeneutic descriptive study of a convenience sample of 12 couples who were interviewed while deciding whether to undergo prenatal genetic testing.Thirty‐two interviews (...) were conducted with 12 men and 12 women separately. Interviews were transcribed verbatim and all data were analyzed using three levels of coding that were sorted into 30 categories and then abstracted into three emergent meta‐themes that described men's and women's attempts to make sense and find meaning in how to best use prenatal genetic technology. Their descriptions of how they thought about, communicated, and coped with their decision were so detailed it was possible to discern nine different types of thinking they engaged in while deciding to accept or decline testing.They believed that decision‐making is a process of working through your own personal style of thinking. This might include only one or any combination of the following types of thinking: analytical, ethical, moral, reflective, practical, hypothetical, judgmental, scary, and second sight, as described in detail by these 12 couples. (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)

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)

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.

BackgroundFor children with life-limiting conditions who are unable to participate in decision-making, decisions are made for them by their parents and paediatricians. Shared decision-making is widely recommended in paediatric clinical care, with parents preferring a collaborative approach in the care of their child. Despite the increasing emphasis to adopt this approach, little is known about the roles and responsibilities taken by parents and paediatricians in this process. In this study, we describe how paediatricians approach decision- (...) class='Hi'>making for a child with a life-limiting condition who is unable to participate in decision-making for his/herself.MethodsThis qualitative phenomenological study involved 25 purposively sampled paediatricians. Verbatim transcripts from individual semi-structured interviews, conducted between mid-2019 and mid-2020, underwent thematic analysis. Interviews were based around a case vignette matched to the clinical experience of each paediatrician.ResultsTwo key themes were identified in the exploration of paediatricians' approach to decision-making for children with life-limiting conditions: there is a spectrum of paediatricians’ roles and responsibilities in decision-making, and the specific influences on paediatricians’ choice of approach for end-of-life decisions. In relation to, analysis showed four distinct approaches: non-directed, joint, interpretative, and directed. In relation to, the common factors were: harm to the child, possible psychological harm to parents, parental preferences in decision-making, and resource allocation.ConclusionsDespite self-reporting shared decision-making practices, what paediatricians often described were physician-led decision-making approaches. Adopting these approaches was predominantly justified by paediatricians’ considerations of harm to the child and parents. Further research is needed to elucidate the issues identified in this study, particularly the communication within and parental responses to physician-led approaches. We also need to further study how parental needs are identified in family-led decision-making approaches. These nuances and complexities are needed for future practice guidance and training around paediatric decision-making.Trial registration: Not applicable. (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)

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)

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

This book clarifies the meaning of the most important and pervasive concepts and tools in bioethical argumentation and assesses the methodological suitability of the main methods for clinical decision-making and argumentation. The first part of the book is devoted to the most developed or promising approaches regarding bioethical argumentation, namely those based on principles, values and human rights. The authors then continue to deal with the contributions and shortcomings of these approaches and suggest further developments by means of (...) substantive and procedural elements and concepts from practical philosophy, normative systems theory, theory of action, human rights and legal argumentation. Furthermore, new models of biomedical and health care decision-making, which overcome the aforementioned criticism and stress the relevance of the argumentative responsibility, are included. (shrink)

Albert Jonsen and Stephen Toulmin have argued that the best way to resolve complex “moral” issues in clinical settings is to focus on the details of specific cases. This approach to medical decision-making, labeled ‘casuistry’, has met with much criticism in recent years. In response to this criticism, Carson Strong has attempted to salvage much of Jonsen’s and Toulmin’s version of casuistry. He concludes that much of their analysis, including Jonsen’s further elaboration about the casuistic methodology, is on (...) the mark. In this essay, the details of Jonsen’s and Toulmin’s version of casuistry and the major criticisms against their approach to clinical decision-making are explicated. Furthermore, it is argued that Strong’s salvage efforts fail to deflect these criticisms. The upshot of this analysis, which includes a few additional criticisms, is that Jonsen’s and Toulmin’s version of casuistry is not an appropriate framework from which to resolve complex “moral” issues in clinical settings. (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)

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)

Making decisions is an important component of everyday living, and issues surrounding autonomy and self-determination are crucial for persons with intellectual disabilities. Article 12 (Equal Recognition before the Law) of the UN Convention on the Rights of Persons with Disabilities addresses this issue of decision-making for persons with disabilities: the recognition of legal capacity. Legal capacity means recognizing the right to make decisions for oneself. Article 12 is also moving in the direction of supported decision-making, (...) as an alternative to substituted decision-making. The objective of this paper is to show conceptually the connection between supported decisionmaking and the preservation of personal autonomy for persons with intellectual disabilities. This paper discusses supported decision-making based on Bach and Kerzner's model: (a) legally independent status, (b) supported decision- making status, and (c) facilitated decision-making status. Arguments will be made based on John Stuart Mill's concept of autonomy and arguments against it using Sarah Conly's argument for paternalism. (shrink)

Making decisions is an important component of everyday living, and issues surrounding autonomy and self-determination are crucial for persons with intellectual disabilities. Adults with intellectual disabilities are characterized by the limitations in their intellectual functioning and in their adaptive behavior, which compromises three skill types, and this starts before the age of 18. Though persons with intellectual disabilities are characterized by having these limitations, they are thought to face significant decisionmaking challenges due to their disability. Moving away from this (...) generalization, Article 12 of the United Nations Convention on the Rights of Persons with Disabilities addresses this issue of decision-making for persons with disabilities, recognizing the right to legal capacity. (shrink)

During the last thirty years different methods have been proposed in order to manage and resolve ethical quandaries, specially in the clinical setting. Some of these methodologies are based on the principles of Decision-making theory. Others looked to other philosophical traditions, like Principlism, Hermeneutics, Narrativism, Casuistry, Pragmatism, etc. This paper defends the view that deliberation is the cornerstone of any adequate methodology. This is due to the fact that moral decisions must take into account not only principles and (...) ideas, but also emotions, values and beliefs. Deliberation is the process in which everyone concerned by the decision is considered a valid moral agent, obliged to give reasons for their own points of view, and to listen to the reasons of others. The goal of this process is not the reaching of a consensus but the enrichment of one's own point of view with that of the others, increasing in this way the maturity of one's own decision, in order to make it more wise or prudent. In many cases the members of a group of deliberation will differ in the final solution of the case, but the confrontation of their reasons will modify the perception of the problem of everyone. This is the profit of the process. Our moral decisions cannot be completely rational, due to the fact that they are influenced by feelings, values, beliefs, etc., but they must be reasonable, that is, wise and prudent. Deliberation is the main procedure to reach this goal. It obliges us to take others into account, respecting their different beliefs and values and prompting them to give reasons for their own points of view. This method has been traditional in Western clinical medicine all over its history, and it should be also the main procedure for clinical ethics. (shrink)

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