Value-laden Decisions Research Articles

Would Neonatal Healthcare Professionals Disclose Personal Opinions When Counseling Parents About Value-laden Decisions?

To explore the attitudes of neonatal healthcare professionals towards disclosing personal opinions when counseling parents about value-laden decisions using scripted video animations, with a view to comparing these later with the attitudes of parents of preterm infants. An exploratory study was conducted during the 5th Annual Meeting of the Joint European Neonatal Societies in Rome. Data were collected via a web-based survey during a live session. Two scripted video animations were presented and discussed, one with and one without disclosure of the physician's personal opinion. Sixty-nine healthcare professionals from 19 countries were enrolled. Forty-seven (68.1%) respondents stated that disclosing personal opinions would "unduly influence" the parents' decision-making process. Thirty-seven (53.6%) participants would not have given their personal opinion in the case presented, and 45 (65.2%) participants stated that disclosure of the physician's personal opinion would result in parents being less prepared for decision-making. Discussions were dominated by underlying values and culture rather than the process of sharing opinions. The study provides new insights into the opinions of healthcare professionals on the disclosure of personal opinions when making difficult treatment decisions, but further research may require a more nuanced approach in different scenarios. Further research with a larger sample and different scenarios is needed to explore in more depth healthcare professionals' and parents' attitudes of autonomous decision-making.

‘Managing values’ in health economics modelling: Philosophical and practical considerations

Stakeholder involvement has been proposed as a key strategy for appropriately managing value-laden decisions or ‘value judgments’ in health economics modelling. Philosophers of science, however, conceive of stakeholder involvement in research in conflicting ways, and also propose alternative strategies for ‘managing values’ in science. Furthermore, all proposed strategies for managing values in science raise philosophical questions and practical challenges that are difficult to resolve. As a result, health economists who seek to appropriately inform value judgments in modelling must currently go without straightforward guidance. There is a need to further explore how health economists should manage value judgments in modelling, taking into account philosophical debates and contextual constraints. This paper discusses core proposals for managing values in science and identifies philosophical questions and practical challenges these proposals leave unresolved. It further considers how this could potentially inform processes to manage value judgments in health economics modelling, using examples from an ongoing modelling project called LEAP (Lifetime Exposures and Asthma Outcomes Projection). We conclude that all strategies to ‘manage values’ in health economics modelling have strengths and weaknesses, but are generally compatible with one another, suggesting that health economists may use a combination of strategies. Further research is needed to explore the effects of strategies to ‘manage values’ in health economics modelling.

Reproductive deliberation: Supporting autonomous decision making in prenatal genetic counseling.

As both the scope and popularity of non-invasive prenatal testing (NIPT) have expanded, debate has emerged about the extent to which this test enhances or undermines reproductive autonomy. Genetic counseling is crucial to support autonomy in the context of making complex and value-laden decisions about reproductive care following high-chance results from NIPT. Two models of post-test prenatal genetic counseling have been proposed; the first of these, non-directive counseling, is the predominant model, while shared decision making is an alternative model deriving from patient care for chronic conditions. In this paper, we argue that neither of these approaches is adequate for counseling after NIPT to support reproductive autonomy. Instead, then, we propose an alternative approach that we call reproductive deliberation. This approach to prenatal genetic counseling simultaneously recognizes the relationality of the counseling encounter and supports the decision making capacity and decisional responsibility of the pregnant person.

Pediatric Ethics Consults for Caregivers: Anybody Home?

Pediatric Ethics Consults for Caregivers: Anybody Home?

Communicating CRISPR: Challenges and opportunities in engaging the public.

CRISPR technologies are advancing at a dizzying pace, and emerging cultural, sociopolitical, ethical, and legal implications continue to pose new challenges for public engagement. Recent calls for public engagement and dialogue on CRISPR applications stress the importance of nuanced thinking and responsible communication. In this chapter, we review public opinion research and find that a comprehensive and clear picture of global views on CRISPR is missing but is necessary to build the foundation for effective public engagement programs. We recommend community-based-participatory research as an inclusive and effective framework for shared knowledge production and decision-making practices for scientific experts and science communicators to engage in genuine and meaningful dialogue with community members in making informed consideration for important value-laden decisions. In response to the politicization of science, this chapter offers strategic communication techniques that can help those facilitating public engagement of CRISPR-based technologies keep cognitive biases, such as identity protective cognition, motivated reasoning, and confirmation bias, at bay.

Decompressive Craniectomy After Traumatic Brain Injury: Incorporating Patient Preferences into Decision-Making

Decompressive craniectomy (DC) is highly effective in relieving intracranial hypertension; however, patient selection, intracranial pressure threshold, timing, and long-term functional outcomes are all subject to controversy. Recently, recommendations were made to update the Brain Trauma Foundation guidelines in regards to the use of DC based on the DECRA (Decompressive Craniectomy in Patients with Severe Traumatic Brain Injury) and RESCUEicp (Trial of Decompressive Craniectomy for Traumatic Intracranial Hypertension) clinical trials. Neither the updated recommendations, nor the aforementioned trials, provide a method in incorporating individualized patient or surrogate decision-maker preferences into decision making. In this manuscript, we aimed to redress the gap of not incorporating patient preferences in such value-laden decision making as in the case of DC for refractory post-traumatic intracranial hypertension. We proposed a decision aid based on principles of Decision Theory, and specifically of Expected Utility Theory. We showed that 1) early secondary DC as studied in DECRA, and based on the 1-year outcome data, is associated with decreased expected utility for all possible preference rankings of outcomes; and 2) recommending a late secondary DC versus tier-3 medical therapy, as studied in RESCUEicp, should be informed by individualized patient preference rankings of outcomes as elicited via shared decision-making. The 1-year outcomes from DECRA and RESCUEicp have served as the basis for updated guidelines. However, unaided interpretation of trial data may not be adequate for individualized decision-making; we suggest that the latter can be significantly supported by decision aids such as the one described here and based on expected utility theory.

Openness to change and conservation in value-laden decisions

Orientation: Values influence decision-making in organisations; however, it is not yet clear how values of openness to change and conservation determine decision quality when managers are faced by competing values.Research purpose: The research examines the relationships between managerial values of openness to change and conservation and cognitive decision quality.Motivation for research: We argue that values influence cognitive decision-making quality.Research approach/design and method: The quantitative research design made use of the portrait value questionnaire–based values of openness to change and conservation in relation to a measure of decision-making quality based on two value clashing decision scenarios.Main findings: The results revealed that the managers’ cognitive decision-making quality was lower for those who valued tradition within the conservation value block, with some indication that self-directed thought related to better cognitive processing of decision alternatives.Contribution/value-add: The research demonstrates how the operationalised integrative complexity measure may be used as a novel decision-making quality metric. In addition, it introduces new value-sensitive decision-making scenarios. It also demonstrates that decision quality considerations in the value-driven decision-making dialogue are as important as ethical considerations. A values and quality decision-making framework gives managers an approach to higher quality decisions.Practical/managerial implications: As values are stable rules of behaviour, the results support the development of decision-making quality and values awareness for managers.

Exploration vs. Data Refinement via Multiple Mobile Sensors.

We examine the deployment of multiple mobile sensors to explore an unknown region to map regions containing concentration of a physical quantity such as heat, electron density, and so on. The exploration trades off between two desiderata: to continue taking data in a region known to contain the quantity of interest with the intent of refining the measurements vs. taking data in unobserved areas to attempt to discover new regions where the quantity may exist. Making reasonable and practical decisions to simultaneously fulfill both goals of exploration and data refinement seem to be hard and contradictory. For this purpose, we propose a general framework that makes value-laden decisions for the trajectory of mobile sensors. The framework employs a Gaussian process regression model to predict the distribution of the physical quantity of interest at unseen locations. Then, the decision-making on the trajectories of sensors is performed using an epistemic utility controller. An example is provided to illustrate the merit and applicability of the proposed framework.

Parental Moral Distress and Moral Schism in the Neonatal ICU.

Ethical dilemmas in critical care may cause healthcare practitioners to experience moral distress: incoherence between what one believes to be best and what occurs. Given that paediatric decision-making typically involves parents, we propose that parents can also experience moral distress when faced with making value-laden decisions in the neonatal intensive care unit. We propose a new concept-that parents may experience "moral schism"-a genuine uncertainty regarding a value-based decision that is accompanied by emotional distress. Schism, unlike moral distress, is not caused by barriers to making and executing a decision that is deemed to be best by the decision-makers but rather an encounter of significant internal struggle. We explore factors that appear to contribute to both moral distress and "moral schism" for parents: the degree of available support, a sense of coherence of the situation, and a sense of responsibility. We propose that moral schism is an underappreciated concept that needs to be explicated and may be more prevalent than moral distress when exploring decision-making experiences for parents. We also suggest actions of healthcare providers that may help minimize parental "moral schism" and moral distress.

The Sources of Uncertainty in Disorders of Consciousness

This article considers recent developments in neurotechnology and their potential to either mitigate or exacerbate the uncertainty of diagnosis and prognosis of DoCs, as well as the potential impact of replacing the diagnosis of vegetative state with unresponsive wakefulness syndrome. The main reasons for abolishing the term “vegetative state” are (1) the unacceptably high misclassification rate of patients with covert awareness, (2) the undesirable prescriptive connotations of the term, and (3) the unwarranted prognostic connotations. While improving prognosis and diagnosis may help surrogates as they face decisions concerning treatment, more accurate diagnosis and prognosis will not by themselves provide decisive answers. Significant diagnostic and prognostic uncertainties are likely to persist and may in fact be ineliminable. We argue that this uncertainty has to be acknowledged, communicated, and factored together with patient values, desires, and preferences in ethically complex, value-laden decisions about the treatment of brain-injured patients.

Physician Bias in Prophylactic Cranial Irradiation Decision Making—An Opportunity for a Patient Decision Aid

IntroductionGuidelines have recommended prophylactic cranial irradiation (PCI) for patients with limited-stage small-cell lung cancer with at least a partial response after thoracic chemoradiation. However, the survival advantage has been small and was observed in an era before magnetic resonance imaging and surveillance. Neurotoxicity also remains a concern, especially in older adults. Thus, patients have a complex value-laden decision to make. We sought to better understand the role physicians play in patient decision making and introduce a patient decision aid (PDA) to potentially facilitate these discussions. Materials and MethodsAn e-mail survey was sent to International Association for the Study of Lung Cancer members querying their personal perspectives and professional recommendations regarding PCI for limited-stage small-cell lung cancer. ResultsWe received 295 responses. Most were from the United States (35%) and Europe (35%) and were radiation (45%) or medical (43%) oncologists. Of those responding, 88% and 50% reported they would recommend PCI to a 50- and 70-year-old patient, respectively. Also, 79% reported that they would wish to receive PCI if faced with this decision. The physicians who would have chosen PCI if faced with the decision were 27.6 and 12.9 times more likely to recommend PCI to a 50- and 70-year-old patient, respectively, than were physicians who would not undergo PCI themselves. Most of the respondents had positive responses to the proposed PDA. ConclusionPhysician bias appears to play a role in PCI counseling, and most physicians reported that the provided PDA was better than their present method for discussing PCI and would help patients make such value-laden choices.

Evaluating a decision analytic approach to climate change adaptation of cultural resources along the Atlantic Coast of the United States

Climate change poses some of the most significant risks for the preservation of coastal cultural resources or cultural heritage. As a result, more research is needed to facilitate the design and implementation of feasible and transparent adaptation strategies for cultural resources under changing climate conditions. In this paper, we begin to explore the challenges and opportunities that face cultural resource managers as they begin to grapple with climate change adaptation planning in dynamic coastal environments. Specifically, we provide an overview of a value-focused, decision-analytic approach that was applied in a pilot test of climate adaptation planning for buildings within designated historic districts on the barrier islands of Cape Lookout National Seashore, North Carolina. We provide descriptions of the challenges that are uniquely facing cultural resource managers and initial evidence of the utility of this type of approach for informing judgments by presenting pre- and post-workshop survey data. Although additional research is critical to offer planning and policy guidance, we found that structured deliberations about cultural resource adaptation planning not only influenced participants’ opinions but also provided a necessary space to better understand the complexities of climate and budget uncertainties. Our evaluation is a first step at documenting the difficult and value-laden decisions that must be addressed by cultural resource managers as fiscal constraints and impending climate impacts threaten the traditional approach of preservation in perpetuity.

Acute and subacute idiopathic interstitial pneumonias.

Idiopathic interstitial pneumonias (IIPs) may have an acute or subacute presentation, or acute exacerbation may occur in a previously subclinical or unrecognized chronic IIP. Acute or subacute IIPs include acute interstitial pneumonia (AIP), cryptogenic organizing pneumonia (COP), nonspecific interstitial pneumonia (NSIP), acute exacerbation of idiopathic pulmonary fibrosis (AE-IPF) and AE-NSIP. Interstitial lung diseases (ILDs) including connective tissue disease (CTD) associated ILD, hypersensitivity pneumonitis, acute eosinophilic pneumonia, drug-induced lung disease and diffuse alveolar haemorrhage need to be differentiated from acute and subacute IIPs. Despite the severe lack of randomized controlled trials for the treatment of acute and subacute IIPs, the mainstream treatment remains corticosteroid therapy. Other potential therapies reported in the literature include corticosteroids and immunosuppression, antibiotics, anticoagulants, neutrophil elastase inhibitor, autoantibody-targeted treatment, antifibrotics and hemoperfusion therapy. With regard to mechanical ventilation, patients in recent studies with acute and subacute IIPs have shown better survival than those in previous studies. Therefore, a careful value-laden decision about the indications for endotracheal intubation should be made for each patient. Noninvasive ventilation may be beneficial to reduce ventilator associated pneumonia.

Doctor, What Would You Do? An ANSWER for Patients Requesting Advice About Value-Laden Decisions.

This article presents a previously published framework, summarized in the mnemonic ANSWER (A, Active listening; N, Needs assessment; S, Self-awareness/reflection; W, Whose perspective?; E, Elicit values; R, Respond) for how to respond to the question, "Doctor, what would you do?" when considering medical decisions that are preference-sensitive, meaning there is limited or debatable evidence to guide clinical recommendations, or are value-laden, such that the "right" decision may differ based on the context or values of a given individual. Using the mnemonic and practical examples, we attempt to make the framework for an ethically appropriate approach to these conversations more accessible for clinicians. Rather than a decision rule, this mnemonic represents a set of points to consider when physicians are considering an ethically acceptable response that fosters trust and rapport. We apply this approach to a case of periviable counseling, among the more emotionally challenging and value-laden antenatal decisions faced by providers and patients.

Straight Thinking and Ethics in Nursing.

A desired outcome for members of healthcare disciplines is to have straight thinking regarding human health and quality of life issues. Difficult situations, embedded with a demand for quick, value-laden healthcare decisions, abound in an ever-changing, complex healthcare arena. The author begins a discussion about potential implications for future disciplinary nurse practice as nurse leaders contemplate what it means to have a straight thinking ethos as providers of vital human health services. Reflections and recommendations for future dialogue with interdisciplinary professionals on the topic of nursing ethics is offered.

The praxis of mathematics teaching: developing mathematical identities

Mathematics teaching as praxis recognises that teachers are required to continually make morally dense and value-laden decisions about their work. However, mathematics teachers’ practice is constrained by the practice architectures of their field. Therefore, to facilitate effective mathematics pedagogy, it is not enough to attend only to the teachers’ practices without also working to reform the practice architectures within which they work. In this paper, data from interviews and observations with effective mathematics teachers are used to identify and explore aspects of classroom practice where students’ broader mathematical identities are engaged. A praxis lens is employed to examine these aspects and discuss the moral and ethical dimensions of the teacher’s decisions and actions, highlighting the implications for the development of students’ mathematical identities. Finally, the data are examined to identify practice architectures that enhance or constrain the teacher’s capacity for praxis and the student’s opportunities to develop robust mathematical identities.

HIV/AIDS and admission to intensive care units: A comparison of India, Brazil and South Africa

In resource-constrained settings and in the context of HIV-infected patients requiring intensive care, value-laden decisions by critical care specialists are often made in the absence of explicit policies and guidelines. These are often based on individual practitioners’ knowledge and experience, which may be subject to bias. We reviewed published information on legislation and practices related to intensive care unit (ICU) admission in India, Brazil and South Africa, to assess access to critical care services in the context of HIV. Each of these countries has legal instruments in place to provide their citizens with health services, but they differ in their provision of ICU care for HIV-infected persons. In Brazil, some ICUs have no admission criteria, and this decision vests solely on the ‘availability, and the knowledge and the experience’ of the most experienced ICU specialist at the institution. India has few regulatory mechanisms to ensure ICU care for critically ill patients including HIV-infected persons. SA has made concerted efforts towards non-discriminatory criteria for ICU admissions and, despite the shortage of ICU beds, HIV-infected patients have relatively greater access to this level of care than in other developing countries in Africa, such as Botswana. Policymakers and clinicians should devise explicit policy frameworks to govern ICU admissions in the context of HIV status. S Afr J HIV Med 2013;14(1):15-16. DOI:10.7196/SAJHIVMED.887

HIV/AIDS and admission to intensive care units: A comparison of India, Brazil and South Africa

In resource-constrained settings and in the context of HIV-infected patients requiring intensive care, value-laden decisions by critical care specialists are often made in the absence of explicit policies and guidelines. These are often based on individual practitioners’ knowledge and experience, which may be subject to bias. We reviewed published information on legislation and practices related to intensive care unit (ICU) admission in India, Brazil and South Africa, to assess access to critical care services in the context of HIV. Each of these countries has legal instruments in place to provide their citizens with health services, but they differ in their provision of ICU care for HIV-infected persons. In Brazil, some ICUs have no admission criteria, and this decision vests solely on the ‘availability, and the knowledge and the experience’ of the most experienced ICU specialist at the institution. India has few regulatory mechanisms to ensure ICU care for critically ill patients including HIV-infected persons. SA has made concerted efforts towards non-discriminatory criteria for ICU admissions and, despite the shortage of ICU beds, HIV-infected patients have relatively greater access to this level of care than in other developing countries in Africa, such as Botswana. Policymakers and clinicians should devise explicit policy frameworks to govern ICU admissions in the context of HIV status.
 
 S Afr J HIV Med 2013;14(1):15-16. DOI:10.7196/SAJHIVMED.887

In defence of the value free ideal

The ideal of value free science states that the justification of scientific findings should not be based on non-epistemic (e.g. moral or political) values. It has been criticized on the grounds that scientists have to employ moral judgements in managing inductive risks. The paper seeks to defuse this methodological critique. Allegedly value-laden decisions can be systematically avoided, it argues, by making uncertainties explicit and articulating findings carefully. Such careful uncertainty articulation, understood as a methodological strategy, is exemplified by the current practice of the Intergovernmental Panel on Climate Change (IPCC).

The effects of place meanings and social capital on desired forest management outcomes: A stated preference experiment

Planners and managers responsible for public-trust resources are often faced with making difficult value-laden decisions requiring trade offs between alternative, and often competing, outcomes. To make more informed decisions within volatile socio-political climates, resource managers and planners need an understanding of the benefits local community members would like the resource to produce, and an understanding of the social and psychological factors that influence those preferences. In this research, we focused on two increasingly important factors – social capital and place-based social–psychological attachments – that influence public preferences for management outcomes. We conducted a stated preference field experiment on residents living in three forest related communities within Southern Appalachia in the Southeastern United States. The experiment elucidated responses to hypothetical management plans designed to produce distinctly different outcomes. The results reveal ecologically focused management plans were the most preferred, much more so than plans designed to produce aesthetic, recreational, or economic outcomes. The data also reveal both individuals’ stocks of social capital as well as their place-based social–psychological attachments influence evaluation of competing management outcomes. Our methodological approach and empirical findings advance both the analytical approaches used to study multiple use public resources and existing knowledge regarding how social and psychological factors influence individuals’ decision-making processes.