Patient decision aids enable patients to be better informed about the potential benefits and harms of their healthcare options. Certification of patient decision aids at the national level in the United States is a critical step towards responsible governance—primarily as a quality measure that increases patients’ safety, as mandated in the U.S. Patient Protection and Affordable Care Act (PPACA). Certification would provide a verification process to identify conflicts of interest that may otherwise bias the scientific evidence (...) presented in decision aids. Certification also benefits clinicians who may otherwise face malpractice claims based on harm to patients caused by possible reliance on patient decision aids that are inaccurate, incomplete, or presented in a manner that biases the patient’s decision. Existing work by the International Patient Decision Aid Standards Collaboration could guide the establishment of a certification process within the U.S. This article argues for national certification of patient decision aids and discusses how that may be achieved. (shrink)

The objective of this study is to evaluate if use of a patient decision aid, when choosing between a repeat cesarean or a trial of labor after a cesarean, reduces medical liability exposure. The authors conclude that use of a PDA conferred liability protection when potential jurors were presented with a hypothetical malpractice claim against an obstetrician following a TOLAC.

The legal doctrine of informed consent has overwhelmingly failed to assure that the medical treatment patients get is the treatment patients want. This Article describes and defends an ongoing shift toward shared decision making processes incorporating the use of certified patient decision aids.

Syltern and colleagues argue that we should give parents more time to make difficult decisions about life-sustaining treatment at the margins of viability (Syltern et al. 2022). This thesis is appe...

Patients should not always receive hard data about the risks and benefits of a medical intervention. That information should always be available to patients who expressly ask for it, but it should be part of standard disclosure only sometimes, and only for some patients. And even then, we need to think about how to offer it.

This chapter addresses the problem of ranking available drugs in guideline development to support clinicians in their work. Based on a pragmatic approach to the notion of evidence and a hierarchical view on different kinds of evidence this chapter introduces a decision aid, HiDAD, which draws on the multi criteria decision making literature. This decision aid implements the wide-spread intuition that there are different kinds of evidence with varying degrees of importance by relying on a strict ordinal (...) ordering of kinds of evidence. In order to construct a ranking every pair of drugs is first compared separately on all kinds of evidence. Next, these quantitative comparisons are then aggregated into an overall comparison between drugs based on all the available evidence in a way which avoids that evidence of less importance is trumped by evidence of the higher levels. Finally, these overall comparisons are used to determine the final ranking of drugs which then informs the process of guideline writing. Properties, modifications and applicability of the decision aid HiDAD are discussed and assessed. (shrink)

PurposeAdvance directives have been criticized for failing to help physicians make decisions consistent with patients’ wishes. This pilot study sought to determine if an interactive, computer-based decision aid that generates an advance directive can help physicians accurately translate patients’ wishes into treatment decisions.MethodsWe recruited 19 patient-participants who had each previously created an advance directive using a computer-based decision aid, and 14 physicians who had no prior knowledge of the patient-participants. For each advance directive, three physicians were randomly assigned (...) to review the advance directive and make five to six treatment decisions for each of six (potentially) end-of-life clinical scenarios.From the three individual physicians’ responses, a “consensus physician response” was generated for each treatment decision (total decisions = 32). This consensus response was shared with the patient whose advance directive had been reviewed, and she/he was then asked to indicate how well the physician translated his/her wishes into clinical decisions.ResultsPatient-participants agreed with the consensus physician responses 84 percent (508/608) of the time, including 82 percent agreement on whether to provide mechanical ventilation, and 75 percent on decisions about cardiopulmonary resuscitation (CPR).Across the six vignettes, patient-participants’ rating of how well physicians translated their advance directive into medical decisions was 8.4 (range = 6.5-10, where 1 = extremely poorly, and 10 = extremely well). Physicians’ overall rating of their confidence at accurately translating patients’ wishes into clinical decisions was 7.8 (range = 6.1-9.3, 1 = not at all confident, 10 = extremely confident).ConclusionFor simulated cases, a computer-based decision aid for advance care planning can help physicians more confidently make end-of-life decisions that patients will endorse. (shrink)

This contribution discusses the development of the Data Ethics Decision Aid (DEDA), a framework for reviewing government data projects that considers their social impact, the embedded values and the government’s responsibilities in times of data-driven public management. Drawing from distinct qualitative research approaches, the DEDA framework was developed in an iterative process (2016–2018) and has since then been applied by various Dutch municipalities, the Association of Dutch Municipalities, and the Ministry of General Affairs (NL). We present the DEDA framework (...) as an effective process to moderate case-deliberation and advance the development of responsible data practices. In addition, by thoroughly documenting the deliberation process, the DEDA framework establishes accountability. First, this paper sheds light on the necessity for data ethical case deliberation. Second, it describes the prototypes, the final design of the framework, and its evaluation. After a comparison with other frameworks, and a discussion of the findings, the paper concludes by arguing that the DEDA framework is a useful process for ethical evaluation of data projects for public management and an effective tool for creating awareness of ethical issues in data practices. (shrink)

This “Legal Briefing” column covers recent legal developments involving patient decision aids. This topic has been the subject of recent articles in JCE. It is included in the 2010 Patient Protection and Affordable Care Act. And it has received significant attention in the biomedical literature, including a new book, a thematic issue of Health Affairs, and a recent article in the New England Journal of Medicine. Moreover, physicians and health systems across the United States are increasingly integrating (...) class='Hi'>decision aids into their clinical practice. Both federal and state laws play a significant role in promoting this expanded use. On the other hand, concerns about liability could stymie development and implementation. We categorize legal developments concerning patient decision aids into the following five sections:1. Development of decision aids2. Effectiveness of decision aids3. Federal regulation of decision aids4. State regulation of decision aids5. Legal concerns regarding decision aids. (shrink)

Recently, technology has impacted upon sports umpiring and refereeing. One effect is that the means to make sound judgments has becoe ?distributed? to new groups of people such as TV viewers and commentators. The result is that justice on the sports field is often seen not to be done and the readiness to question umpires' decisions that once pertained only to the players and, in some sports, to the crowd, has spread to anyone who has a television. What is more, (...) the questioning can now be done on good grounds. This change is explained and a way of thinking about it is put forward. The aim is to develop a theory of the relationship between human match officials and technology. Toward this end I offer a new terminology for the kinds of justice that are involved in match officiating. I argue that the introduction of new technology should be done in such a way as to maintain the justice of decisions and that justice is not the same as accuracy. Justice is best served with a restrained use of new technology. (shrink)

Gaining informed consent among marginalized groups that include decisionally incapacitated individuals and those outside of the researcher's own geo-social and ethnic background still challenges many researchers. We suggest that there is a need for consideration of a different approach to research ethics in international settings. Based on extensive field work in West Africa on medical knowledge transfers and patient–healer relationships, this paper will discuss the challenges posed in obtaining informed individual consent in international settings. It is argued that while being (...) on the whole convincing, the top-down approach of the proposed solutions, which clearly dominates the participative approach, fails in building sustainable capacity, decision-making competency, and empowerment in the communities in which the research is conducted. Using appropriate decision aids can help resolve these issues. (shrink)

Recently, technology has impacted upon sports umpiring and refereeing. One effect is that the means to make sound judgments has becoe ‘distributed’ to new groups of people such as TV viewers and commentators. The result is that justice on the sports field is often seen not to be done and the readiness to question umpires' decisions that once pertained only to the players and, in some sports, to the crowd, has spread to anyone who has a television. What is more, (...) the questioning can now be done on good grounds. This change is explained and a way of thinking about it is put forward. The aim is to develop a theory of the relationship between human match officials and technology. Toward this end I offer a new terminology for the kinds of justice that are involved in match officiating. I argue that the introduction of new technology should be done in such a way as to maintain the justice of decisions and that justice is not the same as accuracy. Justice is best served with a restrained use of new technology. (shrink)

Background Recent publications reveal shortcomings in evidence review and summarization methods for patient decision aids. In the large-scale "Share to Care (S2C)" Shared Decision Making (SDM) project at the University Hospital Kiel, Germany, one of 4 SDM interventions was to develop up to 80 decision aids for patients. Best available evidence on the treatments' impact on patient-relevant outcomes was systematically appraised to feed this information into the decision aids. Aims of this paper were (...) to (1) describe how PtDAs are developed and how S2C evidence reviews for each PtDA are conducted, (2) appraise the quality of the best available evidence identified and (3) identify challenges associated with identified evidence. Methods The quality of the identified evidence was assessed based on GRADE quality criteria and categorized into high-, moderate-, low-, very low-quality evidence. Evidence appraisal was conducted across all outcomes assessed in an evidence review and for specific groups of outcomes, namely mortality, morbidity, quality of life, and treatment harms. Challenges in evidence interpretation and summarization resulting from the characteristics of decision aids and the type and quality of evidence are identified and discussed. Conclusions Evidence reviews in this project were carefully conducted and summarized. However, the evidence identified for our decision aids was indeed a "scattered landscape" and often poor quality. Facing a high prevalence of low-quality, non-directly comparative evidence for treatment alternatives doesn't mean it is not necessary to choose an evidence-based approach to inform patients. While there is an urgent need for high quality comparative trials, best available evidence nevertheless has to be appraised and transparently communicated to patients. (shrink)

When individuals cannot make up their mind, they sometimes use a random decision-making aid such as a coin to make a decision. This aid may also elicit affective reactions: A person flipping a coin may (dis)like the outcome, and thus decide according to this feeling. We refer to this process as catalysing decisions and to the aid as catalyst. We investigate whether using a catalyst may not only elicit affect but also result in more affect-based decision making. (...) We used different online studies that examine affect-driven decisions by investigating scope insensitivity (indirect behavioural measure) and self-reported weight given to feelings versus reasons in hypothetical donation decisions. Study 1a showed that a catalyst (a lottery wheel) lead to more scope insensitive (i.e. affect-driven) donations. Study 1b included several changes and did not replicate these results. Study 2 (preregistered) examined scope insensitivity but did not replicate previous results; Study 3 (preregistered) looked at the weight given to feelings versus reason. Although catalyst (compared to control) participants descriptively reported relying more on feelings, this difference did not reach significance. In contrast to lay beliefs, results do not indicate support for the hypothesis that using a catalyst results in more affect-based hypothetical donation decisions. (shrink)

Asylum legal aid lawyers are under continuous public scrutiny. On the one hand, these lawyers are portrayed as being solely motivated by profit. On the other hand, they are depicted as leftist activists frustrating the legal system. When assisting their asylum seeking clients under the state's legal aid scheme, lawyers need to balance the client's interest, the public interest in the administration of justice and their own interest in profit or survival. The current book examines this balancing act and explores (...) the role of the institutional context. It does so by studying the decision making of asylum legal aid lawyers in the Netherlands and England in respect of two ethical issues: 'time vs. money' and 'hopeless cases'. This empirical research into lawyers' professional ethics in practice will appeal to scholars engaged in lawyers' ethics, policy makers and those involved in the regulation of the legal profession. Dissertation. [Subject: Politics, Human Rights Law, International Law]. (shrink)

Volume 19, Issue 10, October 2019, Page 61-63.

Seventeen television journalistsfrom Indianapolis and Terre Haute, Indiana encountered a computer simulation of newsgathering, based on Potter's Box. The situation involved showing identijable faces in a story about AIDS testing. Additional information was the most accessed resource. Organizational codes of ethics were accessed the least. Journalism organization members sought more advice from all resources than others. More experienced respondents accessed more advicefrom professional peers. Females were less interested in peer advice than their male counterparts.

Visual aids can improve comprehension of risks associated with medical treatments, screenings, and lifestyles. Do visual aids also help decision makers accurately assess their risk comprehension? That is, do visual aids help them become well calibrated? To address these questions, we investigated the benefits of visual aids displaying numerical information and measured accuracy of self-assessment of diagnostic inferences (i.e., metacognitive judgment calibration) controlling for individual differences in numeracy. Participants included 108 patients who made diagnostic inferences (...) about three medical tests on the basis of information about the sensitivity and false-positive rate of the tests and disease prevalence. Half of the patients received the information in numbers without a visual aid, while the other half received numbers along with a grid representing the numerical information. In the numerical condition, many patients --especially those with low numeracy-- misinterpreted the predictive value of the tests and profoundly overestimated the accuracy of their inferences. Metacognitive judgment calibration mediated the relationship between numeracy and accuracy of diagnostic inferences. In contrast, in the visual aid condition, patients at all levels of numeracy showed high-levels of inferential accuracy and metacognitive judgment calibration. Results indicate that accurate metacognitive assessment may explain the beneficial effects of visual aids and numeracy --a result that accords with theory suggesting that metacognition is an essential part of risk literacy. We conclude that well-designed risk communications can inform patients about health-relevant numerical information while helping them assess the quality of their own risk comprehension. (shrink)

Recent evaluation of the practice of euthanasia and related medical decisions at the end of life in the Netherlands has shown a slight decrease in the frequency of physician-assisted death since the enactment of the Euthanasia Law in 2002. This paper focuses on the absence of euthanasia cases concerning patients with dementia and a written advance euthanasia directive, despite the fact that the only real innovation of the Euthanasia Law consisted precisely in allowing physicians to act upon such directives. The (...) author discusses two principal reasons for this absence. One relates to the uncertainty about whether patients with advanced dementia truly experience the suffering they formerly feared. There is reason to assume that they don’t, as a consequence of psychological adaptation and progressive unawareness (anosognosia). The second, more fundamental reason touches upon the ethical relevance of shared understanding and reciprocity. The author argues that, next to autonomy and mercifulness, “reciprocity” is a condition sine qua non for euthanasia. The absence thereof in advanced dementia renders euthanasia morally inconceivable, even if there are signs of suffering and notwithstanding the presence of an advance euthanasia directive. This does not mean, however, that advance euthanasia directives of patients with dementia are worthless. They might very well have a role in the earlier stages of certain subtypes of the disease. To illustrate this point the author presents a case in which the advance directive helped to create a window of opportunity for reciprocity and shared decision-making. (shrink)

Where assistance in suicide is readily available to those dying of AIDS, as in the west coast gay communities of the United States and in the Netherlands, we must examine the different roles of physicians and friends (including lovers, spouses, family members, religious advisors, members of support groups, and intimate others) in helping a person with AIDS decide about and carry out suicide. This paper makes a central assumption: that where assistance in suicide is available, it is the (...) moral obligation of others to protect and enhance as much as possible the rationality of that choice. Four components are identified in a rational choice about suicide in AIDS – whether it is a choice for or against suicide. Phrased as questions a person with AIDS might ask him- or herself, they are: (1) "Is suicide an option I want to consider?" (2) "Shall I hold out for the chance of a cure?" (3) "How shall I time my suicide?" (4) "What weight shall I give to the welfare and interests of others?" Although physicians often make assertions relevant to (1), they are appropriately involved only in (3); and although friends or intimate partners often provide the patient with anecdotal information relevant to (3), they should be involved primarily in (1). In short, both physicians and friends often intervene in the wrong parts of choices made by a person with AIDS about suicide. Keywords: AIDS, assisted suicide, euthanasia, rationality, role of friends and physicians, timing CiteULike Connotea Del.icio.us What's this? (shrink)

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

The principle of individual medical confidentiality is one of the moral principles that Africa inherited unquestioningly from the West as part of Western medicine. The HIV/AIDS pandemic in Southern Africa has reduced the relevance of the principle of individual medical confidentiality. Individual medical confidentiality has especially presented challenges for practitioners among the Bantu communities that are well known for their social inter-connectedness and the way they value their extended family relations. Individual confidentiality has raised several unforeseen problems for persons (...) living with HIV/AIDS, ranging from stigma and isolation to feelings of dejection as it drives them away from their families as a way of trying to keep information about their conditions confidential. The involvement of family members in treatment decisions is in line with the philosophy of Ubuntu and serves to respect patients’ and families’ autonomy while at the same time benefiting the individual patient. (shrink)

Since around 2010, a workers’ history of science has emerged as a distinct set of research questions and professional practices. More than a consolidation of prior concepts, the workers’ history of science attends to resource distribution both in sites of science in the past and in present-day historians’ sites of training and labor—the university, the library, the research organization, the professional meeting, and more. To understand the timing and trajectory of the workers’ history of science, it is helpful to look (...) at the history of “mutual aid.” This example clarifies, first, how the workers’ history of science is enlivening the historiography of science: by bringing to the past a form of analysis that was actively politically suppressed in the workplaces of history in the United States after World War II. It also shows how the workers’ history of science can, in alliance with other movements, gradually transform the political economy of the profession—through small but consequential decisions about how to organize our shared professional worlds. (shrink)

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

Annual and cumulative incidences of HIV + and AIDS in patients reported by the AIDS Surveillance Committee of the Ministry of Health and Welfare are cited to illustrate some characteristics in Japan: nearly 59% of either HIV + or AIDS patients were infected through injection of blood products or by blood transfusion. A number of plaintiffs have sued the Japanese government and pharmaceutical companies since 1989, but no judicial decisions have yet been made. The incidence of HIV (...) decreases for each of the following routes of infection: the second highest route of transmission being heterosexual, followed by bisexual and unconfirmed or unknown cases, and less frequently homosexual, drug use and lastly via vertical transmission. The most serious bioethical problems with HIV + and AIDs patients in Japan is the social segregation of these patients. There are many emotional fears among the general public and medical personnel about AIDS because of their inadequate scientific knowledge of this disease. The Japan Hospital Association is doing The Stop AIDS Campaign and made several surveys. Japan has become increasingly aware of the importance of AIDS education and a great deal of effort is being made to enhance bioethical considerations. (shrink)