This book explores the making of health care rationing decisions through the analysis of three alternative decision makers: patients paying out of pocket; officials setting limits on treatments and coverage; and physicians at the bedside. Hall develops this analysis along three dimensions: political economics, ethics, and law. The economic dimension addresses the practical feasibility of each method. The ethical dimension discusses the moral aspects of these methods, while the legal dimension traces the most recent developments in jurisprudence (...) and health law. (shrink)

The New Jersey Supreme Court has continually avoided making moral judgments about the value of life and emphasized that such decision making should be the province of the potential parents. Recently, in Acuna v. Turkish, the court elaborated on the limitations of the decision-making right of the potential parents, and its decision demonstrated that New Jersey courts were only willing to require physicians to disclose all relevant medical information, and not moral statements that (...) had not been agreed upon by the state's medical community, people, or legislature. Acuna might be read as a departure from the trend displayed by New Jersey courts in “wrongful birth” and “wrongful life” actions toward empowering potential parents to decide if they want to bring the pregnancy to term. However, the decision actually fits squarely within this trend in that the reluctance to expand the information to which potential parents are entitled from their physicians can be directly tied to the reluctance of the New Jersey Supreme Court to weigh in on the value of life in wrongful birth and wrongful life suits. (shrink)

Introduction: making the invisible visible -- The nobility of the material -- Research at war -- The guilded age of research -- The doctor as whistle-blower -- New rules for the laboratory -- Bedside ethics -- The doctor as stranger -- Life through death -- Commissioning ethics -- No one to trust -- New rules for the bedside -- Epilogue: The price of success.

This book is the most comprehensive treatment available of one of the most urgent - and yet in some respects most neglected - problems in bioethics: decision-making for incompetents. Part I develops a general theory for making treatment and care decisions for patients who are not competent to decide for themselves. It provides an in-depth analysis of competence, articulates and defends a coherent set of principles to specify suitable surrogate decisionmakers and to guide their choices, examines the (...) value of advance directives, and investigates the role that considerations of cost ought to play in decisions concerning incompetents. Part II applies this theoretical framework to the distinctive problems of three important classes of individuals, many of whom are incompetent: minors, the elderly and psychiatric patients. The authors' approach combines a probing analysis of fundamental issues in ethical theory with a sensitive awareness of the concrete realities of health care institutions and the highly personal and individual character of difficult practical problems. Its broad scope will appeal to health professionals, moral philosophers and lawyers alike. (shrink)

This article is about the information relevant to decision-making capacity in refusal of life-prolonging medical treatment cases. We examine the degree to which the phenomenology of the options available to the agent—what the relevant states of affairs will feel like for them—forms part of the capacity-relevant information in the law of England and Wales, and how this informational basis varies across adolescent and adult medical treatment cases. We identify an important doctrinal phenomenon. In the leading authorities, (...) the courts appear to count the first-personal phenomenology of the available options among the information that adolescents seeking to refuse life-prolonging treatment must understand and appreciate in order to possess capacity; adults are not held to this (higher) standard. We evaluate this differential treatment in light of philosophical work on transformative choice—decisions involving options whose sensory character, and effect on our values and preferences, are grasped only through experience itself. (shrink)

In Roper v. Simmons (2005) the United States Supreme Court announced a paradigm shift in jurisprudence. Drawing specifically on mounting scientific evidence that adolescents are qualitatively different from adults in their decision-making capacities, the Supreme Court recognized that adolescents are not adults in all but age. The Court concluded that the overwhelming weight of the psychological and neurophysiological data regarding brain maturation supports the conclusion that adolescents are qualitatively different types of agents than adult persons. The Supreme (...) Court further solidified its position regarding adolescents as less than fully mature and responsible decisionmakers in Graham v. Florida (2010) and Miller v. Alabama (2012). In each case, the Court concluded that the scientific evidence does not support the conclusion that children under 18 years of age possess adult capacities for personal agency, rationality, and mature choice. This study explores the implications of the Supreme Court decisions in Roper v. Simmons, Graham v. Florida, and Miller v. Alabama for the “mature minor” standard for medical decision making. It argues that the Supreme Court’s holdings in Roper, Graham, and Miller require no less than a radical reassessment of how healthcare institutions, courts of law, and public policy are obliged to regard minors as medical decisionmakers. The “mature minor” standard for medical decision making must be abandoned. (shrink)

The end of Roe v. Wade has significant implications for the autonomy of pregnant patients at the end of life. At least thirty states restrict the choice to withhold/withdraw life-sustaining treatments from pregnant patients without decisional capacity, invalidating prior advance directives and prohibiting others from choosing these options for the patient. Many restrictions are based on the Roe framework, applying after “viability” or similar considerations of fetal development or prospect for live birth. Scholars have also relied on the abortion framework, (...) arguing that the restrictions impose an undue burden. The end of Roe will free states from having to craft limited restrictions designed to work around prior abortion jurisprudence. Similarly, advocates will no longer be able to draw support from the abortion framework, forcing them to rely instead on cases supporting rights to autonomy/bodily integrity in medical decision-making. (shrink)

Summary Principles Timely support for patients and people close to them, and effective, sensitive communication are essential. Decisions must be based on the individual patient's circumstances and reviewed regularly. Sensitive advance discussion should always be encouraged, but not forced. Information about CPR and the chances of a successful outcome needs to be realistic. Practical matters Information about CPR policies should be displayed for patients and staff. Leaflets should be available for patients and people close to them explaining about CPR, how (...) decisions are made and their involvement in decisions. Decisions about attempting CPR must be communicated effectively to relevant health professionals. In emergencies If no advance decision has been made or is known, CPR should be attempted unless: the patient has refused CPR; the patient is clearly in the terminal phase of illness; or the burdens of the treatment outweigh the benefits. Advance decision making Competent patients should be involved in discussions about attempting CPR unless they indicate that they do not want to be. Where patients lack competence to participate, people close to them can be helpful in reflecting their views. Legal issues Patients' rights under the Human Rights Act must be taken into account in decision making. Neither patients nor relatives can demand treatment which the health care team judges to be inappropriate, but all efforts will be made to accommodate wishes and preferences. In England, Wales and Northern Ireland relatives and people close to the patient are not entitled in law to take health care decisions for the patient. In Scotland, adults may appoint a health care proxy to give consent to medical treatment. Health professionals need to be aware of the law in relation to decision making for children and young people.IntroductionWhy policies are neededCardiopulmonary resuscitation can be attempted on any person whose cardiac or respiratory functions cease. Failure of these functions is part of dying and thus …. (shrink)

This code of practice for health professionals was prepared by a multi-professional group and reflects good clinical practice in encouraging dialogue about individuals' wishes concerning their future treatment. It has a broad practical approach, considers a range of advance statements, advises of dangers and benefits of making treatment decisions in advance and combines annotated code of practice with a quick pull out guide for easy reference.

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)

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

Background In neonatal intensive care, a child's death is often preceded by a medical decision. Nurses, social workers and pastors, however, are often excluded from ethical case deliberation. If multiprofessional ethical case deliberations do take place, participants may not always know how to perform to the fullest. Setting A level-IIID neonatal intensive care unit of a paediatric teaching hospital in the Netherlands. Methods Structured multiprofessional medical ethical decision-making (MEDM) was implemented to help overcome problems experienced. (...) Important features were: all professionals who are directly involved with the patient contribute to MEDM; a five-step procedure is used: exploration, agreement on the ethical dilemma/investigation of solutions, analysis of solutions, decision-making, planning actions; meetings are chaired by an impartial ethicist. A 15-item questionnaire to survey staff perceptions on this intervention just before and 8 months after implementation was developed. Results Before and after response rates were 91/105 (87%) and 85/113 (75%). Factor analysis on the questionnaire suggested a four-factor structure: participants' role; structure of MEDM; content of ethical deliberation; and documentation of decisions/conclusions. Effect sizes were 1.67 (p<0.001), 0.69 (p<0.001) and 0.40 (p<0.01) for the first three factors respectively, but only 0.07 (p=0.65) for the fourth factor. Nurses' perceptions of improvement did not significantly exceed those of physicians. Conclusion Professionals involved in ethical case deliberation perceived that the process of decision-making had improved; they were more positive about the structure of meetings, their own role and, to some extent, the content of ethical deliberation. Documentation of decisions/conclusions requires further improvement. (shrink)

When ethical decisions have to be taken in critical, complex medical situations, they often involve decisions that set the course for or against life-sustaining treatments. Therefore the decisions have far-reaching consequences for the patients, their relatives, and often for the clinical staff. Although the rich psychology literature provides evidence that reasoning may be affected by undesired influences that may undermine the quality of the decision outcome, not much attention has been given to this phenomenon in health care or (...) ethics consultation. In this paper, we aim to contribute to the sensitization of the problem of systematic reasoning biases by showing how exemplary individual and group biases can affect the quality of decision-making on an individual and group level. We are addressing clinical ethicists as well as clinicians who guide complex decision-making processes of ethical significance. Knowledge regarding exemplary group psychological biases (e.g. conformity bias), and individual biases (e.g. stereotypes), will be taken from the disciplines of social psychology and cognitive decision science and considered in the field of ethical decision-making. Finally we discuss the influence of intuitive versus analytical (systematical) reasoning on the validity of ethical decision-making. (shrink)

OBJECTIVE: We studied and compared the attitudes of pregnant women v new mothers in an attempt to confirm changing patterns of maternal response towards medical ethical decision making in critically ill or malformed neonates. DESIGN: Data were obtained by questionnaires divided into three sections: 1. sociodemographic; 2. Theoretical principles which might be utilised in the decision-making process; 3. Hypothetical case scenarios, each followed by possible treatment options. RESULTS: Pregnant women (n = 545) consistently requested less (...) aggressive medical intervention for the hypothetical cases than did new mothers (n = 250) [Trisomy 18: 57% v 42%; p = 0.0004; Asphyxia: 75% v 63%; p = 0.0017; Down's syndrome 81% v 62%; p = 0.0001; LBW 85% v 75%; p = 0.004]. Significant differences were also observed in the responses to the theoretical principles, with pregnant women attributing less importance to preserving life at all cost, while being more concerned with physical and emotional pain and suffering, with financial cost, and with the infant's potential for future productivity. (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)

In recent articles, Daniel Gannon argues that, according to Catholic morality, morally good decision making about life-sustaining treatment is intrinsically based on in-the-moment circumstances. Measured against this moral criterion, Gannon finds physician orders for life-sustaining treatment to be morally unacceptable and proposes his own medical order form. The authors argue here that Catholic moral teaching and tradition do not reduce the role of circumstances to those in the present moment and that such a reductive criterion undermines many (...) of the sources of morality, including conscience, prudence, and moral principles such as the principle of ethically proportionate and disproportionate means. The authors also show that Gannon’s criterion and form generate conceptual and practical contradictions, that POLST is not intrinsically evil, and that when properly implemented, POLST can be morally acceptable. National Catholic Bioethics Quarterly 15.1 : 53–61. (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)

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

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)

Those involved in end-of-life decision making must take into account both legal and ethical issues. This book starts with a critical reflection of ethical principles including ideas such as moral status, the value of life, acts and omissions, harm, autonomy, dignity and paternalism. It then explores the practical difficulties of regulating end-of-life decisions, focusing on patients, healthcare professionals, the wider community and issues surrounding 'slippery slope' arguments. By evaluating the available empirical evidence, the author identifies preferred ways to (...) regulate decisions and minimise abuses at the end of life, and outlines an ethical theory which can provide practical guidance for those engaged in end-of-life decisions"--Provided by publisher. (shrink)

In discussions of medical decision making as it applies to people with disabilities, a major obstacle stands in the way: the perceptions and values of disabled people and of many nondisabled people, regarding virtually the whole range of current health and medical-ethical issues, seem frequently to conflict with one another. This divergence in part grows out of the sense, common among people with disabilities, that their interactions with “the helping professions,” medical and social service professionals, (...) are adversarial. But those differences of opinion also stem more basically from a clash of fundamental values.This paper addresses, in historical perspective, the ways in which the status of persons with disabilities as a stigmatized minority group affects medical decision making. It also examines the efforts of disability rights activists to prevent discrimination against persons with disabilities in current medical culture. Finally, it raises questions about how the rights of people with disabilities will fare as new care standards are developed and implemented. (shrink)

This article considers proposals to reform the law in response to recent high profile cases concerning the medical treatment of children, currently before Parliament in the Access to Palliative Care and Treatment of Children Bill 2019–21. It considers the proposed procedural change, to introduce a requirement for mediation before court proceedings, and argues that dispute resolution processes should be a matter of good practice rather than enshrined in law. It argues that the proposed substantive change to determination of best (...) interests would not result in different outcomes because the best interests analysis co-exist with the legal and professional duties of doctors to children in their care. It argues that if there is to be reform of the law it needs to follow from a comprehensive review of all the issues in which the minimum standards imposed by law fit together with good practice standards and not in response to individual cases. (shrink)

In discussions of medical decision making as it applies to people with disabilities, a major obstacle stands in the way: the perceptions and values of disabled people and of many nondisabled people, regarding virtually the whole range of current health and medical-ethical issues, seem frequently to conflict with one another. This divergence in part grows out of the sense, common among people with disabilities, that their interactions with “the helping professions,” medical and social service professionals, (...) are adversarial. But those differences of opinion also stem more basically from a clash of fundamental values.This paper addresses, in historical perspective, the ways in which the status of persons with disabilities as a stigmatized minority group affects medical decision making. It also examines the efforts of disability rights activists to prevent discrimination against persons with disabilities in current medical culture. Finally, it raises questions about how the rights of people with disabilities will fare as new care standards are developed and implemented. (shrink)

Philosophers have long recognized that the unique values of the individual physician effect medical-ethical decision-making. While not taking issue with this basic assumption, this article critically examines one discussion of how different philosophies (existential, utilitarian, and value realist) can influence a neurosurgeon's decision to operate upon a person having a malignant brain tumor. It also delineates and discusses a fund of ‘medical wisdom’ commonly available to any neurosurgeon and easily obtainable by both researcher and patient. (...) The article suggests that those in the humanities interested in studying the ethical decision-making process in a medical subspecialty become familiar with this fund of knowledge. It can provide a base for evaluating when and how individual medical decisions vary. In this specific instance, the medical knowledge base was used to direct attention to when and how ethical issues are identified and resolved within the staff clinical neurosurgical setting. An informal survey among resident and staff neurosurgeons supported the conclusion that philosophical analyses of medical-ethical decision-making are appreciated when case examples are carefully and accurately documented, when medical terminology is used correctly and when recognition of the practical limits placed on medical decision-making is given. CiteULike Connotea Del.icio.us What's this? (shrink)

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

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)

According to a standard account of patient decision-making capacity, patients can provide ethically valid consent or refusal only if they are able to understand and appreciate their medical c...

Approximately one in 10 children in foster care are medically complex and require intensive medical supervision, frequent hospitalization, and difficult medical decision making. Some of these children are in foster care because their parents cannot care for their medical needs; other parents are responsible for their child’s medical needs due to abuse or neglect. In either case, there can be uncertainty about the role that a child’s biological parents should play in making serious (...) medical decisions. Here we highlight some of the ethical challenges inherent in making these decisions for children in foster care, as seen through the lenses of a child welfare provider, an inpatient care physician, and a primary care pediatrician. (shrink)

Although prisons provide on-site primary care, the corrections system relies on external hospitals to provide a variety of healthcare services. Compared to the general population, incarcerated patients experience higher rates of chronic medical conditions, mental illness, substance abuse, cancer, traumatic brain injury, assault, and communicable disease. Certain specialties of clinicians are likely to encounter patients who are incarcerated, which makes it important for clinicians to understand how medical decision-making may differ when the patient is a prisoner. (...) The corrections system retains custody of inmates and is responsible for their welfare, including facilitating necessary medical care. However, this does not permit corrections personnel or a warden to automatically assume the role of the patient's medical decision-maker. Except for narrow exceptions, prisoners do not lose their rights to medical decision-making. In some instances, corrections staff or the prison warden have improperly asserted authority to act as the patient's medical decision-maker, such as when the patient lacks decision-making capacity. This violates ethical principles of bodily integrity, respect, and fairness. This paper provides an overview of medical decision-making for incarcerated patients, how surrogate decision-maker hierarchies apply to incarcerated patients without decision-making capacity, and special considerations for this subset of patients. (shrink)

In this article, we explore alternative conflict resolution strategies to assist families and clinicians in cases of intractable dissent in paediatric health care decision-making. We focus on the ethical and legal landscape using cases from the Australian jurisdiction in New South Wales, while referencing some global sentinel cases. We highlight a range of alternative means of addressing conflict, including clinical ethics support, and contrast and contextualise facilitative or interest-based mediation, concluding that legal intervention via the courts can be (...) protracted and distressing and should be a ‘last resort’. We acknowledge many might view this as the current status quo, but we go further to recommend strategies optimal for all parties to recognise early signs of conflict and prevent its harmful escalation. While more empirical research is needed, we contend that interest-based mediation may be a valuable adjunctive method of conflict resolution. If judiciously distinguished from and utilised with clinical ethical support, it can be an effective tool to address dissent and its negative sequelae in paediatric healthcare decision-making. (shrink)

In principle, all patients deserve to receive optimal medical treatment equally. However, in situations in which there is scarcity of time or resources, medical treatment must be prioritized based on a triage. The conventional guidelines of medical triage mandate that treatment should be provided based solely on medical necessity regardless of any non-medical value-oriented considerations (“worst-first”). This study empirically examined the influence of value-oriented considerations on medical triage decision–making. Participants were asked to (...) prioritize medical treatment relating to four case scenarios of an emergency situation resulting from a car collision. The cases differ by situational characteristics pertaining to the at-fault driver, which were related to culpability attribution. In three case scenarios most participants gave priority to the most severely injured individual, unless the less severely injured individual was their brother. Nevertheless, in the aftermath of a vehicle-ramming terror attack most participants prioritized the less severely injured individual (“victim-first”). Our findings indicate that when caregivers are presented with concrete highly conflictual triage situations their choices may be based on value-oriented considerations related to contextual characteristics of the emergency situation. Philosophical and practical ramifications of our findings are discussed. (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)

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

The locked-in syndrome is a state of profound paralysis with preserved awareness of self and environment who typically results from a brain stem stroke. Although patients in LIS have great difficulty communicating, their consciousness, cognition, and language usually remain intact. Medical decision-making by LIS patients is compromised, not by cognitive impairment, but by severe communication impairment. Former systems of communication that permitted LIS patients to make only “yes” or “no” responses to questions was sufficient to validate their (...) consent for simple medical decisions but not for consequential medical decisions such as whether to refuse further life-sustaining therapy. Emerging technologies including computer-tracking assistance of retained partial motor function and brain-computer interfaces promise to improve the communication ability of LIS patients and, when better developed, will allow them to fully exercise their right to actively participate in consequential medical decisions about their own medical care. Although so-called “covert cognition” patients clinically diagnosed as vegetative state that are shown to be aware by functional neuroimaging maybe metaphorically considered locked-in, it is nosologically more coherent not to categorize them formally as LIS. (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)

Background Advance healthcare decision-making presumes that a prior treatment preference expressed with sufficient mental capacity (“T1 preference”) should trump a contrary preference expressed after significant cognitive decline (“T2 preference”). This assumption is much debated in normative bioethics, but little is known about lay judgments in this domain. This study investigated participants’ judgments about which preference should be followed, and whether these judgments differed depending on a first-person (deciding for one’s future self) versus third-person (deciding for a friend or (...) stranger) perspective. -/- Methods A vignette-based survey was conducted (N = 1445 US Americans; gender-balanced sample), in a 3 (relationship: self, best friend, stranger) × 2 (T1 preference: treat, do not treat) × 2 (T2 contrary preference: ambiguous, unambiguous) design. -/- Results Participants were more likely to defer to the incapacitated T2 preference of a third-party, while being more likely to insist on following their own T1 capacitated preference. Further, participants were more likely to conclude that others with substantial cognitive decline were still their “true selves,” which correlated with increased deference to their T2 preferences. -/- Conclusions These findings add to the growing evidence that lay intuitions concerning the ethical entitlement to have decisions respected are not only a function of cognition, as would be expected under many traditional bioethical accounts, but also depend on the relationship of the decision to the decision-maker’s true self. (shrink)

This paper examines a number of questions about the degree to which the clinical practice of medicine is affected, if at all, by the legal systems in four countries: Chile, Germany, Japan and the United States. The focus on these four countries in four different regions of the world offers a unique perspective within which to examine medical treatment decisions made by patients and their proxies or surrogates, the potential role for universal written instruments such as advance directives, the (...) cross-professional tensions between clinical and legal concerns in very distinct cultures, and the degree to which legal activities can change or affect clinical realities in the context of these different political and health care systems. We have incorporated, whenever relevant, the insights of many disciplines, including the social sciences, in analyzing the existing interrelations between law and behavior in this specific context. Der Beitrag untersucht, inwieweit die klinische Praxis in vier Ländern mit unterschiedlichen Rechtssystemen und Berufskulturen durch Rechtsnormen oder das Verständnis von Recht beeinflußt wird. Es wird gefragt, welche Funktion rechtliche Interventionen bei der Veränderung von Verhaltensnormen in unterschiedlichen Gesundheitssystemen haben können. Folgende Themenbereiche werden diskutiert: Entscheidungen über die medizinische Behandlung, die von Patienten und ihren Angehörigen oder Stellvertretern getroffen werden; die mögliche Rolle umfassender schriftlicher Verfügungen wie z.B. der Patiententestamente ; die berufsübergreifenden Spannungen zwischen medizinischen und rechtlichen Belangen in sehr unterschiedlichen Kulturen; der Einfluß, den gesetzgeberische Aktivitäten im Kontext der verschiedenen politischen und Gesundheitssysteme auf die medizinische Wirklichkeit haben. Bei ihrer Analyse der in diesem Zusammenhang bestehenden Beziehungen im Verhältnis von Recht und Verhalten haben die Autoren die Erkenntnisse vieler Disziplinen unter Einschluß der Sozialwissenschaften, soweit sie als relevant erscheinen, in ihren Beitrag eingearbeitet. (shrink)

Genetic testing has led to the establishment of the concept of the “previvor”: someone who is not yet sick, but who has a genetic predisposition to disease. The previvor experience demonstrates how the practice of medicine and medical decision making is evolving to render current law and policy increasingly inapplicable to modern medical practice. The introduction of previvorship to the medical landscape raises special issues for the physician-patient relationship and the legal doctrine of informed consent. (...) It challenges some of the most basic assumptions underlying the doctrine, is representative of the doctrine’s declining utility, and is illustrative of the need to transition to a shared decision-making model. Thus, we should begin to envision a legal doctrine that supports a robust shared decision-making approach to address individual preferences and values, the increasing complexity of risk/benefit assessment, and inherent (and sometimes irreducible) uncertainty. Such an approach should emphasize a new, more expansive, and inclusive model of illness. (shrink)

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

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

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

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

Shared Decision-Making is a widely accepted model of the physician–patient relationship providing an ethical environment in which physician beneficence and patient autonomy are respected. It acknowledges the moral responsibility of physician and patient by promoting a deliberative collaboration in which their individual expertise—complementary in nature, equal in importance—is emphasized, and personal values and preferences respected. Its goal coincides with Pellegrino and Thomasma’s proximate end of medicine, that is, a technically correct and morally good healing decision for and (...) with a particular patient. We argue that by perfecting the intellectual ability to apprehend the complexity of clinical situations, and through a perfection of the application of the first principles of practical reason, prudence is able to point toward the right and good shared medical decision. A prudent shared medical decision is therefore always in keeping with the kind of person the physician and the patient have chosen to be. (shrink)