Deciding with Others: Interdependent Decision-Making.

Over the course of human life, health care decision-making is often interdependent. In this article, we use "interdependence" to refer to patients' engagement of nonclinicians-for example, family members or trusted friends-to reach health care decisions. Interdependence, we suggest, is common for patients in all stages of life, from early childhood to late adulthood. This view contrasts with the common bioethical assumption that medical decisions are either wholly independent or dependent and that independence or dependence is tightly coupled with a person's decision-making capacity. In this article, we array various approaches to decision-making along a continuum of interdependence. An appreciation of this continuum can empower patients and elucidate ethical challenges that arise when people transition between different kinds of interdependence across the life span.

A Review of the MINDSPACE Framework for Nudging Health Promotion During Early Stages of the COVID-19 Pandemic.

The coronavirus disease (COVID-19) pandemic has highlighted the link between individual behavior and public health, along with the importance of evidence-based efforts to promote prosocial individual behavior. Insights from behavioral science can inform the design of effective behavior change techniques, or nudges, to influence individual behavior. The MINDSPACE framework organizes 9 behavioral science principles that can be used to guide policy design: Messenger, Incentives, Norms, Defaults, Salience, Priming, Affect, Commitments, and Ego. Using MINDSPACE as an organizing framework, this article provides a review of the literature on nudges to influence prosocial behaviors relevant during a pandemic: handwashing, avoidance of social gatherings, self-isolation and social distancing, and sharing public health messages. Additionally, empirical evidence on the use of nudges during the first several months of the COVID-19 pandemic in 2020 is summarized. Recommendations regarding the use of nudges to achieve public health policy goals during pandemics are provided. Organizational leaders, policymakers, and practitioners can use nudges to promote public health when mandates are not politically feasible or enforceable.

Conceptualizations of consciousness and continuation of care among family members and health professionals caring for patients in a minimally conscious state.

BACKGROUND: The American Academy of Neurology recently emphasized the importance of communicating with patients' families to better reflect patient values in clinical care. However, little is known about how decisions about continuing rehabilitative care made by family caregivers and healthcare providers working with minimally conscious patients are informed by conceptualizations of consciousness and moral status. METHODS: We explored these issues in interviews with 18 family caregivers and 20 healthcare professionals caring for minimally conscious patients. Data were analyzed using thematic content analysis. RESULTS: Results suggest that family members and healthcare professionals share similar views of what consciousness is ("being there") and what it is indicated by ("a look in the eyes," and/or an "ability to do"/agency). They also share a belief that the presence (or "level") of consciousness does not determine whether rehabilitative care should be discontinued. Rather, it should be determined by considerations of suffering and well-being. Providers were more likely to view suffering as rationale for discontinuation of care, while family members viewed suffering as an indicator of and motivator for potential recovery. CONCLUSION: Findings can help optimize family-provider communications about minimally conscious patients by acknowledging shared assumptions and interpretations of consciousness, as well as key areas where perspectives diverge.Implications for rehabilitationFamily and professional caregivers' interpretations of consciousness and suffering are implicated in decisions about continuing rehabilitation for minimally conscious patients.Family members and healthcare providers both rely to some extent on non-observable evidence to evaluate consciousness, which may be an adaptive and philanthropic response to clinical uncertainty.Acknowledging shared assumptions and interpretations of consciousness, as well as diverging perspectives, can help to optimize family-provider communications.

How Clinician-Family Interactions Potentially Impact Clinicians' Conceptualization and Discussions Regarding Prognostic Uncertainties.

OBJECTIVES: Little is known about how clinicians perceive prognostic uncertainty. Our study objective was to identify factors that influence how prognostic uncertainty is viewed by physicians, as it relates to their communications with families. DESIGN: Thirty semi-structured interviews with qualitative content analysis (9 surgeons, 16 intensivists, 3 nurse practitioners, and 2 "other" clinicians). We analyzed interviews using qualitative description with constant comparative techniques. SETTING: Open medical, surgical, neurosurgical, and cardiovascular intensive care units (ICUs) in a 900-bed academic, tertiary Houston hospital. INTERVENTIONS: None. MAIN RESULTS: We identified 2 main factors that influence how clinicians perceive prognostic uncertainty and their perceptions about whether and why they communicate prognostic uncertainties to families: (1) Communicating Uncertainty to "Soften the Blow"; and (2) Communicating Uncertainty in Response to Clinicians' Interpretations of Surrogate Decision Makers' Perceptions of Prognostic Uncertainty. We also identified several subthemes. CONCLUSIONS: Clinician-family interactions influence how clinicians perceive prognostic uncertainty in their communications with patients or families. We discuss ethical and clinical implications of our findings.

Reconciling the opposing effects of neurobiological evidence on criminal sentencing judgments.

Legal theorists have characterized physical evidence of brain dysfunction as a double-edged sword, wherein the very quality that reduces the defendant's responsibility for his transgression could simultaneously increase motivations to punish him by virtue of his apparently increased dangerousness. However, empirical evidence of this pattern has been elusive, perhaps owing to a heavy reliance on singular measures that fail to distinguish between plural, often competing internal motivations for punishment. The present study employed a test of the theorized double-edge pattern using a novel approach designed to separate such motivations. We asked a large sample of participants (N = 330) to render criminal sentencing judgments under varying conditions of the defendant's mental health status (Healthy, Neurobiological Disorder, Psychological Disorder) and the disorder's treatability (Treatable, Untreatable). As predicted, neurobiological evidence simultaneously elicited shorter prison sentences (i.e., mitigating) and longer terms of involuntary hospitalization (i.e., aggravating) than equivalent psychological evidence. However, these effects were not well explained by motivations to restore treatable defendants to health or to protect society from dangerous persons but instead by deontological motivations pertaining to the defendant's level of deservingness and possible obligation to provide medical care. This is the first study of its kind to quantitatively demonstrate the paradoxical effect of neuroscientific trial evidence and raises implications for how such evidence is presented and evaluated.

Mapping the Informed Consent Process for Left Ventricular Assist Devices.

Ethical, practical, and medical challenges affect decisions about left ventricular assist device (LVAD) implantation. The informed consent document (IC-Doc) is integral to the decision-making process and structures informed consent conversations. The objective of this study was to analyze IC-Docs to identify the information patients and their families receive about LVAD implantation to create a model IC-Doc. We requested IC-Doc for LVAD implantation from LVAD programs in the United States. We analyzed them in three areas: medical and technical content, patient knowledge gaps, and syntax. Nineteen IC-Docs representing all United Network of Organ Sharing regions were included. Seventeen (89.5%) mentioned the indications for LVAD implantation (bridge to transplant or destination therapy), and six indicated which category applied to the patient. Palliative care was mentioned as an alternative in nine (47.4%); no IC-Doc discussed nonsurgical palliative care. Eight forms (42.1%) specifically mentioned turning off the LVAD. Eighteen forms mention general bleeding, and four referred to long-term gastrointestinal bleeding. Two IC-Docs addressed driveline infections. One form was written at an 8th grade reading level. There is wide variation in LVAD IC-Docs and omission of some benefits and risks. We have written an IC-Doc that meets criteria for disclosure, fills many knowledge gaps, and has an acceptable readability score.

Patients' Perspectives on Transplantation While Undergoing Left Ventricular Assist Device Support.

Left-ventricular assist device (LVAD) therapy is a growing mechanical circulatory support therapy used to treat patients with advanced heart failure. There is a general assumption among clinicians that patients would prefer to accept a heart to any other treatment were they eligible. However, little research has been done to clarify the nuances of patient treatment preferences for LVAD therapy versus transplantation. The objective of this study was to investigate this treatment preference assumption from patients' perspectives. In a single-site study, 15 LVAD patients, 15 LVAD candidates, 15 LVAD decliners, and 15 LVAD caregivers (n = 60) participated in structured, in-depth interviews to assess decisional processes and treatment preferences for advanced heart failure. The interview guides were consistent with the Ottawa framework on decision-making processes. All participants were identified by the LVAD coordination team and recruited consecutively between February and November 2014. The patient and candidate groups included both LVAD designations: destination therapy (n = 22), bridge-to-transplant (n = 4), as well as four participants who deferred designation pending worsening clinical status. The interviews were analyzed using qualitative description with constant comparisons, aided by ATLAS.ti. Although LVAD eligible patients generally show a preference for heart transplantation as the ideal treatment for heart failure, some patients begin to show ambivalence as they experience LVAD therapy and begin to prefer LVAD as a long-term, destination treatment. Some themes that emerged from the interviews concerning transplantation centered on the consequences of multiple major surgeries (i.e., LVAD placement followed by heart transplantation, n = 18), fears surrounding lifestyle changes of accepting a heart transplant (n = 14) and life satisfaction with an LVAD as a "new normal" (n = 18). Findings suggest that experience with an LVAD can sometimes cause ambivalence about transplant with some patients preferring LVAD as destination even when transplant is an option. We provide clinical and programmatic implications of this, concluding with practical recommendations for how to fully address patients' goals of treatment as their health and situation changes over time.

Perceptions of US and Australian Medical Students and Instructors About Clinical Professional Attire: LAPEL Study.

CONTEXT: White coats have long been the professional uniform of physicians. However, when physicians opt to remove the white coat, their clothing underneath is brought to the forefront and can influence how they are perceived by their patients. OBJECTIVE: To explore the perceptions of medical students and their instructors about appropriate clinical professional attire. METHODS: An anonymous, voluntary 55-question survey was electronically distributed to medical students and their instructors at 2 US and 2 Australian medical schools. The survey incorporated 30 images of sample attire, 9 demographic questions, and 16 questions regarding culture and context of clothing and accessories. RESULTS: In total, 411 students and 73 instructors participated in this study. The data revealed that white coats and neckties are nearly absent in Australian clinical attire. Overall, students were significantly more supportive of full facial coverage due to religious or cultural values compared with instructors (P<.001), and US medical students were significantly more supportive than Australian students (P<.001). All cohorts preferred dress code policies that directed students to avoid but not prohibit the use of perfume or cologne. Nose rings were controversial with significantly more support for use from medical students than instructors (pooled cohorts, P=.002). Medical students in both the United States and Australia indicated that they were most influenced by observing the attire of physicians at work (155 [38%]), compared with courses in medical ethics (19 [5%]), school policy (16 [4%]), or hospital policy (9 [2%]). CONCLUSION: Although regional dress code practices are different in the United States compared with Australia, medical students were overall most influenced by their instructors' attire in clinical settings.

Communication about maternal-fetal surgery for myelomeningocele and congenital diaphragmatic hernia: preliminary findings with implications for informed consent and shared decision-making.

OBJECTIVE: To examine the style and content of consultations for maternal-fetal surgery and draw conclusions about best practices for informed consent and shared decision-making. STUDY DESIGN: Qualitative study of 15 h-long consultations with women diagnosed with fetal myelomeningocele (MMC, n=11) or congenital diaphragmatic hernia (CDH, n=4) who were potential candidates for maternal-fetal surgery at a large children's hospital in the Southwestern US. RESULTS: Major findings were that physicians tended to discuss the risks of fetal prognosis qualitatively more often than quantitatively (70% compared to 30%) and when mortality was a risk the "positive" (percentage survival) frame was always given rather than the morality frame. On average, families only talked 15% of the time and 45% of all their questions were about diagnostic or surgical procedure clarification. CONCLUSION: Efforts should be made to minimize qualitative presentation of risk, which can be vague and confusing to patients. Both survival and mortality frames should be used to avoid biased decision-making. Communication and decision support tools that facilitate more shared decision-making between families and physicians are needed.

Barriers and Facilitators to Initiating and Completing Time-Limited Trials in Critical Care.

OBJECTIVES: A time-limited trial is an agreement between clinicians and patients or surrogate decision makers to use medical therapies over a defined period of time to see if the patient improves or deteriorates according to agreed-upon clinical milestones. Although time-limited trials are broadly advocated, there is little empirical evidence of the benefits and risks of time-limited trials, when they are initiated, when and why they succeed or fail, and what facilitates completion of them. Our study objectives were to 1) identify the purposes for which clinicians use time-limited trials and 2) identify barriers and facilitators to initiating and completing time-limited trials. DESIGN: Semistructured interviews: We analyzed interviews using qualitative description with constant comparative techniques. SETTING: Nine hundred-bed, academic, tertiary hospital in Houston, Texas. Interviewees were from open medical, surgical, neurosurgical, and cardiovascular ICUs. SUBJECTS: Thirty healthcare professionals were interviewed (nine surgeons, 16 intensivists, three nurse practitioners, and two "other" clinicians). INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Interviewees reported initiating time-limited trials for three different purposes: to prepare surrogates and clinicians for discussion and possible shifts toward comfort-care only therapies, build consensus, and refine prognostic information. The main barriers to initiating time-limited trials involve clinicians' or surrogate decision makers' disagreement on setting a time limit. Barriers to completing time-limited trials include 1) requesting more time; 2) communication breakdowns because of rotating call schedules; and 3) changes in clinical course. Finally, facilitators to completing time-limited trials include 1) having defined goals about what could be achieved during an ICU stay, either framed in narrow, numeric terms or broad goals focusing on achievable activities of daily living; 2) applying time-limited trials in certain types of cases; and 3) taking ownership to ensure completion of the trial. CONCLUSIONS: An understanding of barriers and facilitators to initiating and completing time-limited trials is an essential first step toward appropriate utilization of time-limited trials in the ICUs, as well as developing educational or communication interventions with clinicians to facilitate time-limited trial use. We provide practical suggestions on patient populations in whom time-limited trials may be successful, the setting, and clinicians likely to benefit from educational interventions, allowing clinicians to have a fuller sense of when and how to use time-limited trials.

FRAMING EFFECTS ON PHYSICIANS' JUDGMENT AND DECISION MAKING.

This study aimed to assess physicians' susceptibility to framing effects in clinical judgment and decision making. A survey was administered online to 159 general internists in the United States. Participants were randomized into two groups, in which clinical scenarios varied in their framings: frequency vs percentage, with cost information vs without, female patient vs male patient, and mortality vs survival. Results showed that physicians' recommendations for patients in hypothetical scenarios were significantly different when the predicted probability of the outcomes was presented in frequency versus percentage form and when it was presented in mortality rate vs survival rate of the same magnitude. Physicians' recommendations were not different for other framing effects.

Content Analysis of Social Media Related to Left Ventricular Assist Devices.

BACKGROUND: Social media have the potential to offer important benefits for patient education, support, and shared decision making. Despite the proliferation of social media use during the past decade, little is known about the scope and quality of available information, or the purposes that social media sites serve for patient decisional and support needs. METHODS AND RESULTS: We conducted a mixed method study, including content analysis of social media and principal components analysis analysis of data sites discussing left ventricular assist device treatment for heart failure. This study explored aspects of interactivity, user-friendliness, appeal, medium, purpose, audience, and accuracy of information. Higher levels of interactivity (eg, posting comments) seem to enhance the appeal and usability of available information but also introduce greater potential for inaccuracy and inconsistency. The current lack of oversight into the content and quality of available information constitute a challenge for the reliable use of social media as forums for information-seeking and social network-based support. CONCLUSIONS: We conclude that social media outlets constitute a promising source of informational and psychosocial support for patients, caregivers, and candidates, and if used in conjunction with patient-provider dialog, can contribute to informed decision making by facilitating reflection and discussion of personal concerns, values, and informational needs.

Reasons Why Eligible Candidates Decline Left Ventricular Assist Device Placement.

BACKGROUND: A greater understanding of how beliefs and perceptions inform LVAD placement refusals can help ensure that standards for informed decision making are met. We report on the factors that influence refusal and what accounts for changes in decliners' decision-making process when, and if, that occurs. METHOD AND RESULTS: We identified candidates (8 bridge to transplant; 6 destination therapy, 7 without designation) who declined LVAD placement (n = 21), 11 of whom were identified prospectively from February 2014 to March 2015, and 10 of whom were identified retrospectively with the use of our program database. Of these 21 decliners, 11 candidates persistently declined LVAD placement, with a median time of 175 days elapsing between time of LVAD offer and March 4, 2015. Ten candidates declined for an average of 224 days before agreeing to LVAD placement. From March 2014 to March 2015, we conducted structured interviews with LVAD decliners. Interviews were audio recorded, transcribed verbatim, and analyzed quantitatively with the use of Atlas.ti. The findings reflect that refusal can evolve over time. Decliners report that their initial refusals were made reflexively, but the 10 decliners who ultimately opted for LVAD placement changed their decisions as symptoms worsened. Decliners have concerns about the impacts of LVAD treatment on mobility, and they distrust LVAD technology. Some decliners believe LVAD placement would affect their ability to receive a transplant. Finally, decliners believe that they are not sick enough for LVAD placement when they are stabilized with medical management. CONCLUSIONS: Decliners' perspectives are integral for improving informed consent and refusal processes. Our analysis revealed decliners' decision-making processes and factors influencing their decisions. We provide several clinically based practical recommendations based on our findings.

Assessment of patients' and caregivers' informational and decisional needs for left ventricular assist device placement: Implications for informed consent and shared decision-making.

BACKGROUND: Several organizations have underscored the crucial need for patient-centered decision tools to enhance shared decision-making in advanced heart failure. The purpose of this study was to investigate the decision-making process and informational and decisional needs of patients and their caregivers regarding left ventricular assist device (LVAD) placement. METHODS: In-depth, structured interviews with LVAD patients, candidates and caregivers (spouse, family members) (n = 45) were conducted. We also administered a Decisional Regret Scale. RESULTS: Participants reported LVAD decision-making to be quick and reflexive (n = 30), and deferred heavily to clinicians (n = 22). They did not perceive themselves as having a real choice (n = 28). The 2 most prevalent informational domains that participants identified were lifestyle issues (23 items), followed by technical (drive-line, battery) issues (14 items). Participants easily and clearly identified their values: life extension; family; and mobility. Participants reported the need to meet other patients and caregivers before device placement (n = 31), and to have an involved caregiver (n = 28) to synthesize information. Some participants demonstrated a lack of clarity regarding transplant probability: 9 of 15 patients described themselves as on a transplant trajectory, yet 7 of these were destination therapy patients. Finally, we found that decisional regret scores were low (1.307). CONCLUSIONS: Informed consent and shared-decision making should: (a) help patients offered highly invasive technologies for life-threatening disease get past the initial "anything to avoid thinking about death" reaction and make a more informed decision; (b) clarify transplant status; and (c) focus on lifestyle and technical issues, as patients have the most informational needs in these domains.

How behavioral economics can help to avoid 'The last mile problem' in whole genome sequencing.

Failure to consider lessons from behavioral economics in the case of whole genome sequencing may cause us to run into the 'last mile problem' - the failure to integrate newly developed technology, on which billions of dollars have been invested, into society in a way that improves human behavior and decision-making.

Ventricular assist devices: a review of psychosocial risk factors and their impact on outcomes.

BACKGROUND: Psychosocial contraindications for ventricular assist devices (VADs) remain particularly nebulous and are driven by institution-specific practices. Our multi-institutional, multidisciplinary workgroup conducted a review with the goal of addressing the following research question: How are preoperative psychosocial domains predictive of or associated with postoperative VAD-related outcomes? Answers to this question could contribute to the development of treatment-specific (contra) indications for patients under consideration for mechanical devices. METHODS AND RESULTS: We identified 5 studies that examined psychosocial factors and their relationship to postoperative VAD-related outcomes. Our results suggest that 3 psychosocial variables are possibly associated with VAD-related outcomes: depression, functional status, and self-care. Of the few studies that exist, the generalizability of findings is constrained by a lack of methodologic rigor, inconsistent terminology, and a lack of conceptual clarity. CONCLUSIONS: This review should serve as a call for research. Efforts to minimize psychosocial risk before device placement can only be successful insofar as VAD programs can clearly identify who is at risk for suboptimal outcomes.