The timely feature article by van der Pijl et al 1 highlights not only the widespread frequency with which unconsented episiotomies and other procedures during labour are reported by women but also that there is hardly any discussion in the literature on the ethics of consent for procedures in labour. Those national and international bodies with responsibility for midwifery and obstetric practice need not only to recognise but also act to remedy this unacceptable situation. The studies quoted used the recollection (...) of women in reporting consent or lack of it and, although this is an entirely appropriate measure, it gives no insight into what, if any, informed decision-making the care providers carried out. Such information would be useful to determine how better practice might be achieved. A study into the practice of episiotomies by Dutch midwives and obstetricians is referred to and is not reassuring.2 They frequently expressed surprise that consent should be necessary and women were minimally involved in the decision for performing episiotomy. This and other examples quoted of lack of valid consent have a corrosive effect on the fundamental but fragile trust and necessary trustworthiness of the relationship between the person being cared for …. (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)

The decision of the High Court in Bell v Tavistock has excited considerable discussion about lawful consent for puberty-blocking drug treatment for children with gender dysphoria. The present paper draws attention to a wider question that surfaces through this case: is informed decision-making an adequate practical tool for seeking and obtaining patients’ consent for medical treatment? Informed decision-making engages the premises of the rational choice theory: that people will have well-crystallised health goals; and, (...) if they are provided with sufficient information about medical treatments, then they will be able to choose the treatment that satisfies their goals. Whilst appealing, the informed decision-making paradigm is assailed by various fallacies, which apply not only to children but also to adults. In Bell v Tavistock, the High Court seems to have recognised such fallacies, and it rejected informed decision-making as an adequate tool for consent from children with gender dysphoria. Similar considerations apply to adults in various situations. Thus, Bell v Tavistock can be seen as an attempt to refine the views on the consent that were expressed by the Supreme Court in Montgomery. It can be inferred that the Supreme Court did recognise the limitations of informed decision-making, but it did not develop this point. Further work is required to formulate an adequate model of decision-making, and Bell v Tavistock serves as a useful reminder to rethink informed decision-making as the device for consent. (shrink)

Out of 288 Hong Kong cancer patients, 92.3% include themselves in decision-making, 71% prefer joint decision-making: with family, with doctor, with doctor plus family, with family minus doctor, and with doctor minus family. <5% want decision-making by “doctor-alone” and <1% desire decision-making by “family-alone”. Harmony, communication and responsibility are reasons for family participation. Most patients prefer “specialist” for information, followed by “family”, “friends”, and “GP”. Trust in doctors and prospects for controlling/curing disease (...) are important factors in decision-making. Patients want to participate and be listened to rather than make decisions. Doctors should not disclose information to family without patients’ permission, nor withhold information from patient [End Page 109] on family’s request. Only 25% of patients have discussed post-competent treatment with others and 7% have heard of Advance Directive ; 24% refuse to discuss it. After AD has been explained to them, 66% remain reluctant to sign one, preferring to leave oral instructions or appoint family as proxy decision-makers. The family’s decision-making role increases when patients become incompetent. The top reason for signing AD is to receive preferred post-competent treatments, and for not signing it, difficulty with making a prospective decision. The implications of these findings will be discussed. (shrink)

Since its advent, predictive DNA testing has been perceived as a technology that may have considerable impact on the quality of people’s life. The decision whether or not to use this technology is up to the individual client. However, to enable well considered decision making both the negative as well as the positive freedom of the individual should be supported. In this paper, we argue that current professional and public discourse on predictive DNA-testing is lacking when it (...) comes to supporting positive freedom, because it is usually framed in terms of risk and risk management. We show how this ‘risk discourse’ steers thinking on the good life in a particular way. We go on to argue that empirical research into the actual deliberation and decision making processes of individuals and families may be used to enrich the environment of personal deliberation in three ways: (1) it points at a richer set of values that deliberators can take into account, (2) it acknowledges the shared nature of genes, and (3) it shows how one might frame decisions in a non-binary way. We argue that the public sharing and discussing of stories about personal deliberations offers valuable input for others who face similar choices: it fosters their positive freedom to shape their view of the good life in relation to DNA-diagnostics. We conclude by offering some suggestions as to how to realize such public sharing of personal stories. (shrink)

Shifting laws and regulations increasingly displace the centrality of women's health concerns in the provision of abortion services. This is exemplified by the growing presence of deceptive Crisis Pregnancy Centers alongside new informed consent laws designed to dissuade women from seeking abortions. Litigation on informed consent is further complicated in the clinical context due to the increased mobilization of facts – such as the gestational age or sonogram of the fetus – delivered with the intent to dissuade women (...) from accessing abortion. In other words, factual information utilized for ideological purpose. To preserve a woman's autonomy and decision-making capacity, there must be a concerted effort on the part of legislators and courts to place a woman's health at the center of abortion law and policy. (shrink)

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

Since its advent, predictive DNA testing has been perceived as a technology that may have considerable impact on the quality of people’s life. The decision whether or not to use this technology is up to the individual client. However, to enable well considered decision making both the negative as well as the positive freedom of the individual should be supported. In this paper, we argue that current professional and public discourse on predictive DNA-testing is lacking when it (...) comes to supporting positive freedom, because it is usually framed in terms of risk and risk management. We show how this ‘risk discourse’ steers thinking on the good life in a particular way. We go on to argue that empirical research into the actual deliberation and decision making processes of individuals and families may be used to enrich the environment of personal deliberation in three ways: (1) it points at a richer set of values that deliberators can take into account, (2) it acknowledges the shared nature of genes, and (3) it shows how one might frame decisions in a non-binary way. We argue that the public sharing and discussing of stories about personal deliberations offers valuable input for others who face similar choices: it fosters their positive freedom to shape their view of the good life in relation to DNA-diagnostics. We conclude by offering some suggestions as to how to realize such public sharing of personal stories. (shrink)

Applied a theory of information integration to decision making with probabilistic events. 10 undergraduates judged the subjective worth of duplex bets that included independent gain and lose components. The worth of each component was assumed to be the product of a subjective weight that reflected the probability of winning or losing, and the subjective worth of the money to be won or lost. The total worth of the bet was the sum of the worths of the 2 components. (...) Thus, each judgment required multiplying and adding operations. The multiplying model worked quite well in 4 experimental conditions. The adding model showed more serious discrepancies, though these were small in magnitude. The theory of functional measurement was applied to scale the subjective values of the probability and money stimuli. Subjective and objective values were nonlinearly related both for probability and for money. (shrink)

Information Technology is a new tool in education that continually changes and offers new opportunities for teaching and learning. In general, the effects of IT are complex and depend upon people’s decisions about development and use. This study investigates the ethical issues in education in terms of Information Systems students’ attitudes at Saudi universities towards digital piracy. The differences in the ethical decision-making process, ethical awareness, and intention to perform questionable acts is examined. The authors tested for differences (...) in attitudes toward eighteen different questionable actions by using three different factors. The measures of awareness capture the extent to which respondents felt that a particular action was unethical according to each of several ethical criteria. This work explored information technology ethics in several ways. The work analyzed whether information technology use is viewed by individuals as an ethical topic and demographic differences were explored. Significant differences were found in many cases between demographic groups based on ethical issues. These findings can be used to target and address ethical issues and enforcement in information systems curriculum. (shrink)

Advance care planning (ACP) is a process that seeks to elicit patients’ goals, values, and preferences for future medical care. While most commonly employed in adult patients, pediatric ACP is becoming a standard of practice for adolescent and young adult patients with potentially life-limiting illnesses. The majority of research has focused on patients and their families; little attention has been paid to the perspectives of healthcare providers (HCPs) regarding their perspectives on the process and its potential benefits and limitations. Focus (...) groups were conducted with 15 physicians as part of a larger study of adolescent and young adult ACP in hematopoietic stem cell transplant (HSCT) patients. This study identified two categories important to the utility of ACP in pediatric HSCT patients; (1) the temporal context of ACP and decision making and (2) the limitations of pediatric ACP, with subcategories identified as (a) embodied and witnessed knowing, (b) the impact of clinical cascades—when the treatment of one organ system creates complications in another system that needs to be treated—and a creation of a “new normal” following complications of illness and its treatment in the pediatric intensive care unit (PICU), (c) the balancing of adolescents’ autonomy with their capacity to make informed medical decisions, and (d) the epistemological frames that differ between HCP and patients and their families. These findings support ACP in adolescent and young adult HSCT patients, with a number of implications for practice as this process becomes more common. (shrink)

Market crises amplify fear, disrupting rational decision-making of stock investment. This study examines the relationship between investors’ information priorities—such as intuition, company performance, technical analysis, and other factors—and their fear responses (freeze, flight, and hiding) during market crashes. Using the Bayesian Mindsponge Framework (BMF) to analyze data from 1,526 investors in China and Vietnam, the findings reveal complex dynamics. We found positive associations between investors’ prioritization of social influence and intuition for investment decision-making with being freeze (...) (i.e., not knowing what to do with the owned stock), between prioritization of professionals’ evaluation and intuition with fleeing (i.e. giving up stock investment permanently), and between prioritization of professionals’ evaluation and social influence with hiding (i.e., stopping investing in stock for a while). In contrast, prioritization of companies’ performance metrics (e.g., net profit, debt, etc.) was negatively associated with being freeze, fleeing, and hiding. Meanwhile, prioritization of professionals’ evaluation, technical analysis, and liquidity was negatively associated with being freeze, fleeing, and hiding, respectively. The study highlights the importance of disseminating transparent, accurate information through government and media channels, along with implementing financial education programs, to promote rational investment decisions and reduce fear-driven behaviors. (shrink)

In our current era, a new rapidly spreading pandemic disease called coronavirus disease, caused by a virus identified as a novel coronavirus, is becoming a crucial threat for the whole world. Currently, the number of patients infected by the virus is expanding exponentially, but there is no commercially available COVID-19 medication for this pandemic. However, numerous antiviral drugs are utilized for the treatment of the COVID-19 disease. Identification of the appropriate antivirus medicine to treat the infection of COVID-19 is still (...) a complicated and uncertain decision. This study’s key objective is to develop a novel approach called _q_-rung orthopair probabilistic hesitant fuzzy rough set, which incorporates the _q_-rung orthopair fuzzy set, probabilistic hesitant fuzzy set, and rough set structures. New _q_-ROPHFR aggregation operators have been established: the _q_-ROPHFR Einstein weighted averaging operator and the _q_-ROPHFR Einstein weighted geometric operator. In this study, we explored some basic features of the developed operators. Afterward, to demonstrate the viability and feasibility of the established decision-making approach in real-world applications, a case study related to selecting drugs for COVID-19 pandemic is addressed. Furthermore, a comprehensive comparison with the _q_-rung orthopair probabilistic hesitant fuzzy rough TOPSIS technique is also presented to illustrate the benefits of the new framework. The obtained results confirm the reliability and effectiveness of the proposed approach for finding uncertainty in real-world decision-making. (shrink)

With the pressing shortage of human organs and recent breakthroughs in gene editing, xenotransplantation—using animal organs, tissues or cells for human transplants—offers new hope for patients on wait lists. The use of genome editing technologies to produce xenotransplants from pigs with reduced immunogenicity has recently brought renewed attention to the field while also raising a host of ethical dilemmas. These concerns include animal welfare, the risks of zoonotic diseases, the moral implications of crossing species boundaries and the potential inequities in (...) access to such treatments. In their article ‘Who shall go first? A multicriteria approach to patient selection for first clinical trials of cardiac xenotransplantation’,1 Kögel and colleagues propose an ethical framework for selecting patients in cardiac xenotransplantation trials. They argue that while significant advances have been made with xenotransplants in brain-dead humans, limited knowledge can be gained from procedures performed outside clinical trials. According to them, knowledge production should be prioritised, and terminally ill patients who are unlikely to survive would not contribute meaningfully to scientific understanding or benefit from the procedure. At the core of xenotransplantation ethics …. (shrink)

A framework is presented to better characterize the role of individual differences in information processing style and their interplay with contextual factors in determining decision making quality. In Experiment 1, we show that individual differences in information processing style are flexible and can be modified by situational factors. Specifically, a situational manipulation that induced an analytical mode of thought improved decision quality. In Experiment 2, we show that this improvement in decision quality is highly contingent on (...) the compatibility between the dominant thinking mode and the nature of the task. That is, encouraging an intuitive mode of thought led to better performance on an intuitive task but hampered performance on an analytical task. The reverse pattern was obtained when an analytical mode of thought was encouraged. We discuss the implications of these results for the assessment of decision making competence, and suggest practical directions to help individuals better adjust their information processing style to the situation at hand and make optimal decisions. (shrink)

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

Progress in neuroscience will allow us to reveal the neuronal correlates of psychological processes involved in ethically relevant notions such as informed consent. Informed consent involves decision making, the psychological and neural processes of which have been investigated extensively in neuroscience. The neuroscience of decision making may be able to contribute to an ethics of informed consent by providing empirical and thus descriptive criteria. Since, however, descriptive criteria must be distinguished from normative criteria, (...) the neuroscience of decision making cannot replace the ethics of informed consent. Instead, the neuroscience of decision making could complement the current ethics, resulting in what can be called neuroethics of informed consent. It is concluded that current progress in the neurosciences could complement and change the way in which we approach ethical problems in neuropsychiatry. (shrink)

Objectives: To elicit the perceptions and preferences of patients with rheumatoid arthritis regarding information and participation in treatment decision-making. To analyse the patients’ narratives on the background of the ethical discourse on various approaches to treatment decision-making. Design: In-depth interviews with themes identified using principles of grounded theory. Participants: 22 patients with long-standing rheumatoid arthritis. Main outcome measures: Qualitative data on patients’ perceptions and preferences regarding information and participation in decision-making about treatment. Results: (...) class='Hi'>Decision-making about treatment has been described by the patients as a process consisting of different stages with shifting loci of control and responsibility. Patients initially received one treatment recommendation and were not aware of alternative treatment options. Those participants in this study who wanted information about negative effects of a treatment cited “interest in one’s own health” and the potential “use of information” as reasons for their preference. The physicians’ expert knowledge and clinical experience regarding the effects of medication were cited as arguments by patients for a treatment recommendation. Conclusions: The patients’ accounts of decision-making about treatment differ from models of physician–patient relationship that have been put forward in ethical discourse. These differences may be relevant with respect to the starting point of an ethical analysis of treatment decision-making. Patients’ accounts with respect to a lack of information on treatment alternatives point to ethically relevant challenges regarding treatment decision-making in clinical practice. (shrink)

There is wide consensus among bioethicists about the importance of autonomy when determining whether or not a patient has the right to refuse life-saving treatment (LST). In this context, autonomy has typically been understood in terms of the patient’s ability to make an informed decision. According to the traditional view, decision-making capacity (DMC) is seen as both necessary and sufficient for the right to refuse LST. Recently, this view has been challenged by those who think that (...) considerations of authenticity and putative counterexamples should lead us to revise the traditional account. In this paper, we respond to these revisionist arguments, and we defend the traditional view according to which we have autonomy-based reasons to respect a patient’s decision to refuse LST if and only if she has DMC. (shrink)

Algorithmic decision-making based on profiling may significantly affect people’s destinies. As a rule, however, explanations for such decisions are lacking. What are the chances for a “right to explanation” to be realized soon? After an exploration of the regulatory efforts that are currently pushing for such a right it is concluded that, at the moment, the GDPR stands out as the main force to be reckoned with. In cases of profiling, data subjects are granted the right to receive (...) meaningful information about the functionality of the system in use; for fully automated profiling decisions even an explanation has to be given. However, the trade secrets and intellectual property rights (IPRs) involved must be respected as well. These conflicting rights must be balanced against each other; what will be the outcome? Looking back to 1995, when a similar kind of balancing had been decreed in Europe concerning the right of access (DPD), Wachter et al. (2017) find that according to judicial opinion only generalities of the algorithm had to be disclosed, not specific details. This hardly augurs well for a future right of access let alone to explanation. Thereupon the landscape of IPRs for machine learning (ML) is analysed. Spurred by new USPTO guidelines that clarify when inventions are eligible to be patented, the number of patent applications in the US related to ML in general, and to “predictive analytics” in particular, has soared since 2010—and Europe has followed. I conjecture that in such a climate of intensified protection of intellectual property, companies may legitimately claim that the more their application combines several ML assets that, in addition, are useful in multiple sectors, the more value is at stake when confronted with a call for explanation by data subjects. Consequently, the right to explanation may be severely crippled. (shrink)

Algorithm Decision Making (ADM) systems designed to augment or automate human decision-making have the potential to produce better decisions while also freeing up human time and attention for other pursuits. For this potential to be realised, however, algorithmic decisions must be sufficiently aligned with human goals and interests. We take a Principal-Agent (P-A) approach to the questions of ADM alignment and trust. In a broad sense, ADM is beneficial if and only if human principals can trust (...) algorithmic agents to act faithfully on their behalf. This mirrors the challenge of facilitating P-A relationships among humans, but the peculiar nature of human-machine interaction also raises unique issues. The problem of asymmetric information is omnipresent but takes a different form in the context of ADM. Although the decision-making machinery of an algorithmic agent can in principle be laid bare for all to see, the sheer complexity of ADM systems based on deep learning models prevents straightforward monitoring. We draw on literature from economics and political science to argue that the problem of trust in ADM systems should be addressed at the level of institutions. Although the dyadic relationship between human principals and algorithmic agents is our ultimate concern, cooperation at this level must rest against an institutional environment which allows humans to effectively evaluate and choose among algorithmic alternatives. (shrink)

Objectives: to assess physicians’ and patients’ views in Saudi Arabia towards involving the patient versus the family in the process of diagnosis disclosure and decision-making, and to compare them with views from the USA and Japan.Design: A self-completion questionnaire was translated to Arabic and validated.Participants: Physicians from different specialties and ranks and patients in a hospital or attending outpatient clinics from 6 different regions in KSA.Results: In the case of a patient with incurable cancer, 67% of doctors and (...) 51% of patients indicated that they would inform the patient in preference to the family of the diagnosis . Assuming the family already knew, 56% of doctors and 49% of patients would tell the patient even if family objected . However, in the case of HIV infection, 59% of physicians and 81% of patients would inform the family about HIV status without the patient’s consent . With regards to withholding ventilatory support, about 50% of doctors and over 60% of patients supported the use of mechanical ventilation in a patient with advanced cancer, regardless of the wishes of the patient or the family. Finally, the majority of doctors and patients were against assisted suicide.Conclusions: Although there was more recognition for a patient’s autonomy amongst physicians, most patients preferred a family centred model of care. Views towards information disclosure were midway between those of the USA and Japan. Distinctively, however, decisions regarding life prolonging therapy and assisted suicide were not influenced to a great extent by wishes of the patient or family, but more likely by religious beliefs. (shrink)

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

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)

Medical tourism—the practice where patients travel internationally to privately access medical care—may limit patients’ regular physicians’ abilities to contribute to the informed decision-making process. We address this issue by examining ways in which Canadian family doctors’ typical involvement in patients’ informed decision-making is challenged when their patients engage in medical tourism.

An empirical investigation was conducted to determine whether management information systems (MIS) majors, on average, exhibit ethical decision-making processes that differ from students in other functional business areas. The research also examined whether the existence of a computer-based information system in an ethical dilemma influences ethical desision-making processes. Although student subjects were used, the research instrument has been highly correlated with educational levels attained by adult subjects in similar studies. Thus, we feel that our results have a (...) high likelihood of generalization to the MIS professional community. The results indicate that MIS majors exhibit more socially-oriented ethical decision-making processes than non-MIS majors measured by the Defining Issues Test. The results also indicate that the existence of a computer-based information system in an ethical dilemma may influence ethical decision-making processes. The study makes no statement regarding MIS majors making more (or less) ethical decisions. The business ethics literature is reviewed, details of the study are presented, implications for management are considered, and directions for future research are suggested. (shrink)

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

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

Obtaining a valid informed consent from an elderly person, especially when frail or with possible dementia, will initially involve the practical problem of assessing the ability to communicate. Only then can the assessment of decisionmaking capacities and the obtaining of informed consent for participation in research be progressed. Normal ageing does not impair communication or decision-making, but pathological status does, this may, or may not, be associated with the ageing process. Perceptual impairment may, in particular, interfere (...) with the communication. Once the subject appreciates and understands that he/she has the right to make a choice then it is important to ensure that he/she fully understands the decision he/she is being asked to make and can communicate and explain in his/her own words why a particular decision was made. In this paper suggestions, based upon existing guidelines or texts, will be made as to how to improve communication with the elderly and the capabilities that the subject must demonstrate to show his capacity to make a decision will be discussed. (shrink)

Decision making capacity (DMC) is a fundamental concept grounding the principle of respect for autonomy and the practice of obtaining informed consent. DMC must be determined and documented every time a patient undergoes a hospital procedure and for routine care when there is reason to believe decision making ability is compromised. In this paper we explore a path toward ethically informed development and implementation of a hospital policy related to DMC assessment. We begin with (...) a review of the context of DMC assessment before discussing some considerations relevant to policy creation by healthcare ethics committees. The discussion concludes in a presentation of a typology of capacity assessment policies, which draws upon a sampling of currently used hospital policies to illustrate relevant ethical considerations. (shrink)

This article deals with making decisions about starting terminal care. The results are part of a larger survey on nurses’ conceptions of terminal care in community health centres in Finland. The importance, frequency and timing of decision making as well as communication and the number of investigations and procedures carried out are examined. The relationship between decision making and the size of a health centre’s catchment population is also discussed. The results make it possible to (...) compare the current situation in Finland with the national law on patients’ rights. The sample consisted of 328 nurses who worked on the wards of 32 community health centres. The data were collected by means of a structured questionnaire and processed with the Statistical Package for Social Sciences software. The nurses agreed that explicit decision making and documentation about starting terminal care were necessary, but it was highlighted that the practice had many shortcomings. Decisions were often made too late and the patients were not always aware of their situation; family members and the nursing staff were mostly better informed. It was noted that many investigations and other procedures were carried out on terminally ill patients, often at the request of family members. Decision making was found to have some relationship to the size of a health centre’s catchment area. (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)

BackgroundHealth decisions occur in a context with omnipresent social influences. Information concerning what other patients decide may present certain interventions as more desirable than others.ObjectivesTo explore how physicians refer to what other people decide in conversations about the relevancy of cardio-pulmonary resuscitation or do-not-attempt-resuscitation orders.MethodsWe recorded forty-three physician–patient admission interviews taking place in a hospital in French-speaking Switzerland, during which CPR is discussed. Data was analysed with conversation analysis.ResultsReference to what other people decide in regards to CPR is used five (...) times, through reported speech. The reference is generic, and employed as a resource to deal with trouble encountered with the patient’s preference, either because it is absent or potentially incompatible with the medical recommendation. In our data, it is a way for physicians to present decisional paths and to steer towards the relevancy of DNAR orders. By calling out to a sense of membership, it builds towards the patient embracing norms that are associated with a desirable or relevant social group.ConclusionsIntroducing DNAR decisions in terms of what other people opt for is a way for physicians to bring up the eventuality of allowing natural death in a less overt way. Formulating treatment choices in terms of what other people do has implications in terms of supporting autonomous and informed decision making, since it nudges patients towards conformity with what is presented as the most preferable choice on the basis of social norms. (shrink)

Decision-making capacity is a vital concept in law, ethics, and clinical practice. Two legal cases where capacity literally had life and death significance are NHS Trust v Ms T [2004] and Kings College Hospital v C [2015]. These cases share another feature: unusual beliefs. This essay will critically assess the concept of capacity, particularly in relation to the unusual beliefs in these cases. Firstly, the interface between capacity and unusual beliefs will be examined. This will show that the (...) “using and weighing of information” is the pivotal element in assessment. Next, this essay will explore the relationship between capacity assessment and a decision’s “rationality.” Then, in light of these findings, the essay will appraise the judgments in NHS v T and Kings v C, and consider these judgments’ implications. More broadly, this essay asks: Does capacity assessment examine only the decision-making process, or is it also influenced by a decision’s rationality? If influenced by rationality, capacity assessment has the potential to become “a search and disable policy aimed at those who are differently orientated in the human life-world”. In contentious cases like these, this potential deserves attention. (shrink)

In this article, I present an argument that suggests neuroscience should inform judgments of decision-making capacity. First, I review key behavioral and neurocognitive data to demonstrate that neuroscientific tests might be predictive of decision-making capacity, and that these tests might inform clinical judgments of capacity. Second, I argue that, consistent with the principles of autonomy and justice, such data should inform judgements of decision-making capacity. While the neuroscience of decision-making capacity still requires (...) time to mature, there is strong reason to believe that neuroscience might assist clinicians in adjudicating difficult cases in the future. This article focuses on the assessment of capacity in brain injury patients who have profound communication impairments, however, the overarching aim of the article is to highlight the potential use of neuroscience to improve our understanding of the relationship between cognition and decision-making capacity. (shrink)

The best interests principle is commonly utilized in acute care settings to assist with decision making about life-saving and life-sustaining treatment. This ethical principle demands that the decision maker refers to some conception of quality of life that is relevant to the individual patient. The aim of this article is to describe the factors that are required to be incorporated into an account of quality of life that will provide a morally justifiable basis for making a (...) judgement about the future quality of life, and therefore the best interests, of critically ill patients who are mentally incompetent. This account consists of three major components - pain and suffering, body functioning, and autonomy - and is applicable in situations where very limited information is available to guide decision making. This framework helps to make decisions about the provision of life-saving treatment that are as consistent as possible in all patient situations. (shrink)

Background: Hospices are based on a holistic approach which places the physical, psychological, social and spiritual welfare of their patients at the forefront of their work. Furthermore, they draw up their own mission statements which they are at pains to follow and seek to conduct their work in accordance with codes of ethics and standards of care. Research question and design: Our study researched what form the processes and degrees of latitude in decision-making take in practice when questions (...) of an ethical and ethically relevant nature arise. We used a qualitative approach. Data collection and evaluation was based on the methods of grounded theory. Ethical considerations: The study was reported to the relevant Ethics Commission who had raised no objections following the submission of the study protocol. The study at the hospices was approved by the directors of the hospices and the nursing teams. The rights of the participants were protected by obtaining informed consent. Results: Medication in the prefinal phase and questions affecting the provision of solids and liquids in the end-of-life phase have an ethical dimension. In the context of these two fields, decisions are taken collectively. A nurse’s individual (and ethically relevant) leeway in decision-making processes is restricted to the nurse’s own style of administering care. The nurse’s decision-making often depends to a far greater degree on her ability to adapt her concept of ideal care to fit the practical realities of her work than to any conceptual framework. Discussion: An adaptive process is necessary for the nurse because she is required to incorporate the four pillars of hospice care – namely, physical, psychological, social and spiritual care – into the practice of her daily work. Conclusion: Ethically relevant decisions are often characterised by nurses adjusting their aspiration levels to the practical conditions with which they are confronted. (shrink)

Opponents of reproductive choice are attempting to limit reproductive decisions based on certain underlying reasons. This commentary explores the rationales for these limitations and the objections to them. It concludes that reasoned-based limitations are unsupportable and unenforceable.

People are worried that advances in genetics will lead to a revival of eugenics. Such worries are often associated with eugenic practices carried out early in the 20th century---the forcible sterilization of feebleminded persons in the United States and the Nazi program of Racial Hygiene. A "new eugenics" involving prenatal genetic testing and the selective abortion of fetuses diagnosed with severe genetic disorders might, nonetheless, be acceptable. In chapter one I examine the history of eugenics and discuss what might make (...) a new eugenics more tolerable. ;Chapters two and three discuss reproductive decision making by individuals . Chapter 2 investigates the morality of abortion. I conclude that the moral status of the fetus is ultimately uncertain. In exceptional circumstances, such as the case where a fetus would develop into a severely disabled infant, there are good reasons for thinking that abortion is morally permissible. It is plausible, for example, that the value of a fetal life is a function of its future quality of life. ;In chapter three I discuss what quality of life consists in. I develop a pluralistic perspective according to which quality of life is a function of multiple independent components. When deciding to bring a child into existence parents should consider the quality of life expected for the child and also take into account the likely impact on their own lives, the lives of other family members, and society as a whole. ;Chapter four asks whether or not governmental restrictions should be placed on the kinds of genetic interventions which will be permitted. A worry is that interventions aimed at enhancement would only be available to the financially fortunate and thus promote unjust social inequalities. Another worry is that the development and use of such interventions would drain medical resources away from more fruitful purposes and thus have a negative impact on aggregate utility. The social aim to promote liberty, on the other hand, speaks against the imposition of restrictions. Faced with conflicting social values, we need to think more about how to make trade-offs between liberty, equality, and aggregate utility. (shrink)

Can findings from psychology and cognitive neuroscience about the neural mechanisms involved in decision-making can tell us anything useful about the commonly-understood mental phenomenon of making voluntary choices? Two philosophical objections are considered. First, that the neural data is subpersonal, and so cannot enter into illuminating explanations of personal level phenomena like voluntary action. Secondly, that mental properties are multiply realized in the brain in such a way as to make them insusceptible to neuroscientific study. The paper (...) argues that both objections would be weakened by the discovery of empirical generalisations connecting subpersonal properties with the personal level. It gives three case studies that furnish evidence to that effect. It argues that the existence of such interrelations are consistent with a plausible construal of the personal-subpersonal distinction. Furthermore, there is no reason to suppose that the notion subpersonal representation relied on in cognitive neuroscience illicitly imports personal-level phenomena like consciousness or normativity, or is otherwise explanatorily problematic. (shrink)

Evidence accumulation has been the core component in recent development of perceptual and value-based decision-making theories. Most studies have focused on the evaluation of evidence between alternative options. What remains largely unknown is the process that prepares evidence: how may the decision-maker sample different sources of information sequentially, if they can only sample one source at a time? Here we propose a normative framework in prescribing how different sources of information should be sampled proactively to facilitate the (...) decision process: beliefs for different noisy sources are updated in a Bayesian manner and participants can proactively allocate resource for sampling (i.e. saccades) among different sources to maximize the information gain in such process. We show that our framework can account for human participants’ actual choice and saccade behaviors in a two-alternative value-based decision-making task. Moreover, our framework makes novel predictions about the empirical eye movement patterns. (shrink)

Background: Information sharing is one of the most important means of public health nurses collaborating with other healthcare professionals and community members. There are complicated ethical issues in the process. Research objectives: To describe the ethical dilemmas associated with client information sharing that Japanese public health nurses experience in daily practice and to clarify their decision-making process to resolve these dilemmas. Research design: Data were collected using a three-phase consensus method consisting of semi-structured interviews, self-administered questionnaires and a (...) group interview. Participants and research context: We surveyed administrative public health nurses in Shizuoka Prefecture, Japan. The semi-structured interviews were carried out with 12 administrative public health nurses, and the self-administered questionnaires were sent to all 899 administrative public health nurses. The group interview was carried out with eight administrative public health nurses. Ethical considerations: Ethical approval was granted by the ethics committee of the School of Health Sciences, Nagoya University, Japan (8-158, 9-130). Findings: Information-sharing ethical dilemmas occurred most often when clients’ decisions did not coincide with the nurses’ own professional assessments, particularly when they faced clinical issues that were inherently ambiguous. In their decision-making processes, nurses prioritised ‘protection of health and life’. Discussion: These findings suggest that, above all, they sought to address urgent risks to clients’ lives while upholding the principle of client autonomy as much as possible. In such cases, the nurses made decisions regarding whether to share information about the client depending on the individual situation. Conclusion: Public health nurses should protect the client’s health while taking into consideration their relationship with the client. (shrink)

Background: Independent decision-making is one of the basic rights of patients. However, in clinical practice, most older cancer patients’ treatment decisions are made by family members. Objective: This study attempted to analyze the treatment decision-making process and formation mechanism for older cancer patients within the special cultural context of Chinese medical practice. Method: A qualitative study was conducted. With the sample saturation principle, data collected by in-depth interviews with 17 family members and 12 patients were subjected (...) to thematic analysis. Ethical considerations: The study was approved by the ethics committees of Sun Yat-sen University. All participants provided verbal informed consent after being told their rights of confidentiality, anonymity, and voluntary participation. They had the right to refuse to answer questions and could withdraw at any time. Results: Three themes emerged: (1) complex process; (2) transformation of family decision-making power; and (3) individual compromise. Family members inevitably had different opinions during the long process of treatment decision-making for older cancer patients. The direction of this process could be regarded as an extension of the family power relationship. The patient usually compromised the decision to survive, which was made by family members. Conclusion: This study describes the treatment decision-making process of older cancer patients in the context of Chinese culture. The reasons underlying this process are related to the views on life and death and family values. An individual is a part of the family, which is often seen as the minimal interpersonal unit in Chinese society. It is significant that while emphasizing patient autonomy in the decision-making process, health professionals should also pay attention to the important roles of culture and family. (shrink)

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

The paper proposes a new technique for dealing with multi-attribute decision making problems through an extended TOPSIS method under neutrosophic cubic environment. Neutrosophic cubic set is the generalized form of cubic set and is the hybridization of a neutrosophic set with an interval neutrosophic set. In this study, we have defined some operation rules for neutrosophic cubic sets and proposed the Euclidean distance between neutrosophic cubic sets. In the decision making situation, the rating of alternatives with (...) respect to some predefined attributes are presented in terms of neutrosophic cubic information where weights of the attributes are completely unknown. In the selection process, neutrosophic cubic positive and negative ideal solutions have been defined. An extended TOPSIS method is then proposed for ranking the alternatives and finally choosing the best one. Lastly, an illustrative example is solved to demonstrate the decision making procedure and effectiveness of the developed approach. (shrink)