"A Shell of My Former Self": Using Figurative Language to Promote Communication About Patient Suffering.

While the relief of suffering is an important goal of medicine, suffering is often missed or ignored in clinical practice. We believe that this occurs for two reasons. First, clinicians often approach suffering by focusing on the causes of suffering rather than the experience of suffering. Second, the subjective nature of suffering makes it difficult to discuss. To address these gaps, we read 52 relevant works of literature and performed qualitative analysis to categorize figurative language into themes of psychological (i.e., non-physical) suffering. We identified 254 excerpts of figurative language characterizing psychological suffering. Among these excerpts, 13 salient themes recurred, including: brokenness, diminishment, disorientation, drowning, emptiness, imprisonment, battle, darkness, isolation, invisibility, lifelessness, punishment, and torture. The development of a shared language of suffering can foster a therapeutic patient-clinician relationship and improve clinicians' ability to recognize and address a patient's experience of suffering.

Policies for Mandatory Ethics Consultations at U.S. Academic Teaching Hospitals: A Multisite Survey Study.

OBJECTIVES: To determine the number of top-ranked U.S. academic institutions that require ethics consultation for specific adult clinical circumstances (e.g., family requests for potentially inappropriate treatment) and to detail those circumstances and the specific clinical scenarios for which consultations are mandated. DESIGN: Cross-sectional survey study, conducted online or over the phone between July 2016 and October 2017. SETTING: We identified the top 50 research medical schools through the 2016 U.S. News and World Report rankings. The primary teaching hospital for each medical school was included. SUBJECTS: The chair/director of each hospital's adult clinical ethics committee, or a suitable alternate representative familiar with ethics consultation services, was identified for study recruitment. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: A representative from the adult ethics consultation service at each of the 50 target hospitals was identified. Thirty-six of 50 sites (72%) consented to participate in the study, and 18 (50%) reported having at least one current mandatory consultation policy. Of the 17 sites that completed the survey and listed their triggers for mandatory ethics consultations, 20 trigger scenarios were provided, with three sites listing two distinct clinical situations. The majority of these triggers addressed family requests for potentially inappropriate treatment (9/20, 45%) or medical decision-making for unrepresented patients lacking decision-making capacity (7/20, 35%). Other triggers included organ donation after circulatory death, initiation of extracorporeal membrane oxygenation, denial of valve replacement in patients with subacute bacterial endocarditis, and posthumous donation of sperm. Twelve (67%) of the 18 sites with mandatory policies reported that their protocol(s) was formally documented in writing. CONCLUSIONS: Among top-ranked academic medical centers, the existence and content of official policies regarding situations that mandate ethics consultations are variable. This finding suggests that, despite recent critical care consensus guidelines recommending institutional review as standard practice in particular scenarios, formal adoption of such policies has yet to become widespread and uniform.

Signature Informed Consent for Long-Term Opioid Therapy in Patients With Cancer: Perspectives of Patients and Providers.

CONTEXT: Signature informed consent (SIC) is a part of a Veterans Health Administration ethics initiative for patient education and shared decision making with long-term opioid therapy (LTOT). Historically, patients with cancer-related pain receiving LTOT are exempt from this process. OBJECTIVES: Our objective is to understand patients' and providers' perspectives on using SIC for LTOT in patients with cancer-related pain. METHODS: Semistructured interviews with 20 opioid prescribers and 20 patients who were prescribed opioids at two large academically affiliated Veterans Health Administration Medical Centers. We used a combination of deductive and inductive approaches in content analysis to produce emergent themes. RESULTS: Potential advantages of SIC are that it can clarify and help patients comprehend LTOT risks and benefits, provide clear upfront boundaries and expectations, and involve the patient in shared decision making. Potential disadvantages of SIC include time delay to treatment, discouragement from recommended opioid use, and impaired trust in the patient-provider relationship. Providers and patients have misconceptions about the definition of SIC. Providers and patients question if SIC for LTOT is really informed consent. Providers and patients advocate for strategies to improve comprehension of SIC content. Providers had divergent perspectives on exemptions from SIC. Oncologists want SIC for LTOT to be tailored for patients with cancer. CONCLUSION: Provider and patient interviews highlight various aspects about the advantages and disadvantages of requiring SIC for LTOT in cancer-related pain. Tailoring SIC for LTOT to be specific to cancer-related concerns and to have an appropriate literacy level are important considerations.

What We Mean When We Talk About Suffering-and Why Eric Cassell Should Not Have the Last Word.

This paper analyzes the phenomenon of suffering and its relationship to medical practice by focusing on the paradigmatic work of Eric Cassell. First, it explains Cassell's influential model of suffering. Second, it surveys various critiques of Cassell. Next it outlines the authors' concerns with Cassell's model: it is aggressive, obscure, and fails to capture important features of the suffering experience. Finally, the authors propose a conceptual framework to help clarify the distinctive nature of subjective patient suffering. This framework contains two necessary conditions: (1) a loss of a person's sense of self, and (2) a negative affective experience. The authors suggest how this framework can be used in the medical encounter to promote clinician-patient communication and the relief of suffering.

Training to Increase Rater Reliability When Assessing the Quality of Ethics Consultation Records with the Ethics Consultation Quality Assessment Tool (ECQAT).

The Ethics Consultation Quality Assessment Tool (ECQAT) establishes standards by which the quality of ethics consultation records (ECRs) can be assessed. These standards relate to the ethics question, consultation-specific information, ethical analysis, and recommendations and/or conclusions, and result in a score associated with one of four levels of ethics consultation quality. For the ECQAT to be useful in assessing and improving the quality of healthcare ethics consultations, individuals who rate the quality of ECRs need to be able to reliably use the tool. We developed a short course to train ethics consultants in using the ECQAT, and evaluated whether the participants (1) achieved an acceptable level of calibration in matching expert-established quality scores for a set of ethics consultations, and (2) were satisfied with the course. We recruited 28 ethics consultants to participate in a virtual, six-session course. At each session participants and faculty reviewed, rated, and discussed one to two ECRs. The participants' calibration in matching expert-established quality scores improved with repeated exposure at all levels of ethics consultation quality. Participants were generally more accurate when assessing consultation quality at the dichotomous level of "acceptable" (scores of three or four) versus "unacceptable" (scores of one or two) than they were with more a specific score. Participants had higher rates of accuracy with the extreme ratings of "strong" (level four) or "poor" (level one). Although participants were highly satisfied with the course, only a minority of participants achieved the prespecified acceptable level of calibration (that is, 80 percent or greater accuracy between their score and expert-established scores). These results suggest that ECQAT training may require more sessions or need modification in the protocol to achieve higher reliability in scoring. Such trainings are an important next step in ensuring that the ECQAT is a tool that can be used to promote improvement in ethics consultation quality.

Ethics Consultation Quality Assessment Tool: A Novel Method for Assessing the Quality of Ethics Case Consultations Based on Written Records.

Although ethics consultation is offered as a clinical service in most hospitals in the United States, few valid and practical tools are available to evaluate, ensure, and improve ethics consultation quality. The quality of ethics consultation is important because poor quality ethics consultation can result in ethically inappropriate outcomes for patients, other stakeholders, or the health care system. To promote accountability for the quality of ethics consultation, we developed the Ethics Consultation Quality Assessment Tool (ECQAT). ECQAT enables raters to assess the quality of ethics consultations based on the written record. Through rigorous development and preliminary testing, we identified key elements of a quality ethics consultation (ethics question, consultation-specific information, ethical analysis, and conclusions and/or recommendations), established scoring criteria, developed training guidelines, and designed a holistic assessment process. This article describes the development of the ECQAT, the resulting product, and recommended future testing and potential uses for the tool.

A Pilot Evaluation of Portfolios for Quality Attestation of Clinical Ethics Consultants.

Although clinical ethics consultation is a high-stakes endeavor with an increasing prominence in health care systems, progress in developing standards for quality is challenging. In this article, we describe the results of a pilot project utilizing portfolios as an evaluation tool. We found that this approach is feasible and resulted in a reasonably wide distribution of scores among the 23 submitted portfolios that we evaluated. We discuss limitations and implications of these results, and suggest that this is a significant step on the pathway to an eventual certification process for clinical ethics consultants.

How Do Healthcare Employees Rate the Ethics of Their Organization? An Analysis Based on VA IntegratedEthics@ Staff Survey Data.

Healthcare organizations with an ethical culture experience higher levels of employee productivity, less staff turnover, better levels of patient safety, resource and cost savings, and higher levels of patient satisfaction. Employees' perceptions of the ethics of their organization are considered a good indicator of the ethics culture. How employees rate the ethics of their organization is not well understood. Previous research has identified a number of attributes that are salient to employees' perceptions in this area. However, little is known about how employees synthesize their perceptions of these attributes to rate the ethics of their organization. Without this knowledge, managers have little specific information to act on to improve practices that would in turn improve employees' perceptions of their organization's ethics. For this study, we used data from Department of Veterans Affairs' (VA) 2014 IntegratedEthics@ Staff Survey administered to Veterans Health Administration (VHA) staff. We used multivariate regression analyses to investigate how VHA employees weigh their perceptions of eight attributes of an ethical organization to inform an overall rating of the ethics of their organization. We found that employee perceptions of fairness, clarity of expectations, accountability, and leadership's prioritization of ethics had the strongest associations with the overall rating. In addition, employees disproportionately weighed their positive perceptions in determining their overall rating. Therefore, a strategy to improve employees' perceptions of these attributes could potentially have the greatest marginal return on investment with respect to improving employees' perceptions of the ethics of an organization.

Increased prevalence of autoimmunity in patients with white spot syndromes and their family members.

OBJECTIVE: To determine whether there is an increased prevalence of systemic autoimmune diseases in both patients with white spot syndromes (WSS) and their family members. METHODS: Patients with WSS at participating institutions were asked to complete a questionnaire reporting their own medical histories as well as any autoimmune diseases among their first- and second-degree relatives. RESULTS: As of January 1, 2008, 114 questionnaires had been collected, providing medical histories of 114 patients with WSS and 1098 family members. The number of patients with WSS with self-reported systemic autoimmune diseases was 26 (23%). Of 1098 relatives, 106 (10%) had at least 1 autoimmune disease. Systemic autoimmunity was more prevalent in female relatives (13%) as compared with male relatives (6%). In addition, the prevalence of autoimmunity was significantly higher among first-degree relatives (13%) than second-degree relatives (8%). Patients who themselves had systemic autoimmune diseases showed a greater prevalence of systemic autoimmunity among their families as compared with the families of patients without systemic autoimmune diseases. CONCLUSIONS: Our data indicate that there is an increased prevalence of systemic autoimmunity in both patients with WSS and their first- and second-degree relatives. This suggests that WSS occur in families with inherited immune dysregulation that predisposes to autoimmunity.

Ethical challenges within Veterans Administration healthcare facilities: perspectives of managers, clinicians, patients, and ethics committee chairpersons.

To promote ethical practices, healthcare managers must understand the ethical challenges encountered by key stakeholders. To characterize ethical challenges in Veterans Administration (VA) facilities from the perspectives of managers, clinicians, patients, and ethics consultants. We conducted focus groups with patients (n = 32) and managers (n = 38); semi-structured interviews with managers (n = 31), clinicians (n = 55), and ethics committee chairpersons (n = 21). Data were analyzed using content analysis. Managers reported that the greatest ethical challenge was fairly distributing resources across programs and services, whereas clinicians identified the effect of resource constraints on patient care. Ethics committee chairpersons identified end-of-life care as the greatest ethical challenge, whereas patients identified obtaining fair, respectful, and caring treatment. Perspectives on ethical challenges varied depending on the respondent's role. Understanding these differences can help managers take practical steps to address these challenges. Further, ethics committees seemingly, are not addressing the range of ethical challenges within their institutions.

Priority setting and the ethics of resource allocation within VA healthcare facilities: results of a survey.

BACKGROUND: Setting priorities and the subsequent allocation of resources is a major ethical issue facing healthcare facilities, including the Veterans Health Administration (VHA), the largest integrated healthcare delivery network in the United States. Yet despite the importance of priority setting and its impact on those who receive and those who provide care, we know relatively little about how clinicians and managers view allocation processes within their facilities. PURPOSE: The purpose of this secondary analysis of survey data was to characterize staff members' perceptions regarding the fairness of healthcare ethics practices related to resource allocation in Veterans Administration (VA) facilities. The specific aim of the study was to compare the responses of clinicians, clinician managers, and non-clinician managers with respect to these survey items. METHODS: We utilized a paper and web-based survey and a cross-sectional design of VHA clinicians and managers. Our sample consisted of a purposive stratified sample of 109 managers and a stratified random sample of 269 clinicians employed 20 or more hours per week in one of four VA medical centers. The four medical centers were participating as field sites selected to test the logistics of administering and reporting results of the Integrated Ethics Staff Survey, an assessment tool aimed at characterizing a broad range of ethical practices within a healthcare organization. RESULTS: In general, clinicians were more critical than clinician managers or non-clinician managers of the institutions' allocation processes and of the impact of resource decisions on patient care. Clinicians commonly reported that they did not (a) understand their facility's decision-making processes, (b) receive explanations from management regarding the reasons behind important allocation decisions, or (b) perceive that they were influential in allocation decisions. In addition, clinicians and managers both perceived that education related to the ethics of resource allocation was insufficient and that their facilities could increase their effectiveness in identifying and resolving ethical problems related to resource allocation. CONCLUSION: How well a healthcare facility ensures fairness in the way it allocates its resources across programs and services depends on multiple factors, including awareness by decision makers that setting priorities and allocating resources is a moral enterprise (moral awareness), the availability of a consistent process that includes important stakeholder groups (procedural justice), and concurrence by stakeholders that decisions represent outcomes that fairly balance competing interests and have a positive net effect on the quality of care (distributive justice). In this study, clinicians and managers alike identified the need for improvement in healthcare ethics practices related to resource allocation.

Sharing chemical information without sharing chemical structure.

Studies to assess the risks of revealing chemical structures by sharing various chemical descriptor data are presented. Descriptors examined include "Lipinski-like" properties, 2D-BCUT descriptors, and a high-dimensional "fingerprint-like" descriptor (MACCs-vector). We demonstrate that unless sufficient precautions are taken, de novo design software such as EA-Inventor is able to derive a unique chemical structure or a set of closely related analogs from some commonly used descriptors. Based on the results of our studies, a set of guidelines or recommendations for safely sharing chemical information without revealing chemical structure is presented. A procedure for assessing the risk of revealing chemical structure when exchanging chemical descriptor information was also developed. The procedure is generic and can be applied to any chemical descriptor or combination of descriptors and to any set of structures to enable a decision about whether the exchange of information can be done without revealing the chemical structures.

Family member involvement in hastened death.

When patients pursue a hastened death, how is the labor of family care-giving affected? The authors examined this question in a qualitative study of 35 families. Four cases reveal the main themes: "taking care" included mutual protection between patients and family members; "midwifing the death" without professional support left families unprepared for adverse events; "tying up loose ends" included dealing with family members' fear of legal consequences; and "moving ahead" involved a greater risk of complicated grief when families encountered complications during the dying process. These results highlight the positive and negative consequences of family members' participation in a hastened death.