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.

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.

"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.

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.

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.

Ethics consultation in United States hospitals: a national survey.

CONTEXT: Although ethics consultation is commonplace in United States (U.S.) hospitals, descriptive data about this health service are lacking. OBJECTIVE: To describe the prevalence, practitioners, and processes of ethics consultation in U.S. hospitals. DESIGN: A 56-item phone or questionnaire survey of the "best informant" within each hospital. PARTICIPANTS: Random sample of 600 U.S. general hospitals, stratified by bed size. RESULTS: The response rate was 87.4%. Ethics consultation services (ECSs) were found in 81% of all general hospitals in the U.S., and in 100% of hospitals with more than 400 beds. The median number of consults performed by ECSs in the year prior to survey was 3. Most individuals performing ethics consultation were physicians (34%), nurses (31%), social workers (11%), or chaplains (10%). Only 41% had formal supervised training in ethics consultation. Consultation practices varied widely both within and between ECSs. For example, 65% of ECSs always made recommendations, whereas 6% never did. These findings highlight a need to clarify standards for ethics consultation practices.

Improvements in advance care planning in the Veterans Affairs System: results of a multifaceted intervention.

BACKGROUND: Advance care planning (ACP) aims to guide health care in the event of decisional incapacity. Interventions to promote ACP have had limited effectiveness. We conducted an educational and motivational intervention in Department of Veterans Affairs outpatient clinics to increase ACP use and proxy and health care provider understanding of patients' preferences and values. METHODS: We recruited 23 providers and up to 14 of each of their patients; the patients were randomized to the control or intervention group. Eligibility criteria included a preexisting relationship with the provider, age 55 years or older, chronic health condition(s), and no recorded advance directive. The intervention group (n = 119) received an ACP workbook, motivational counseling by social workers, and cues to providers to discuss ACP. The control group (n = 129) received an advance directive booklet. RESULTS: The intervention patients reported more ACP discussions with their providers (64% vs 38%; P<.001). Living wills were filed in the medical record twice as often in the intervention group (48% vs 23%; P<.001). Provider-patient dyads in the intervention group had higher agreement scores than the control group for treatment preferences, values, and personal beliefs (58% vs 48%, 57% vs 46%, and 61% vs 47%, respectively; P<.01 for all comparisons). The agreement scores for the proxy-patient dyads did not differ between groups for treatment preferences and values, but were higher in the intervention than the control group for personal beliefs (67% vs 56%). CONCLUSION: This intervention demonstrates mixed results and highlights the ongoing challenges of helping health care providers and potential proxy decision makers represent patient preferences and values.

How do surrogate decision makers describe hospice? Does it matter?

We interviewed 71 surrogate decision makers of older, chronically ill veterans to explore their knowledge of hospice and their role in helping loved ones access hospice services. We asked them to describe hospice and any previous hospice experiences. Of the group, 24 percent with hospice experience and 14 percent without hospice experience correctly described three key aspects of hospice: who hospice cares for, where the care is provided, and the goal of the care. Additionally, we found evidence that surrogates who correctly described the three key aspects of hospice were inclined to pursue hospice care for loved ones in the future, and surrogates who provided less complete descriptions of hospice might not access it. Since surrogates often help dying patients access care, incomplete knowledge of hospice may be an important barrier to hospice services. We advocate that clinicians discuss the three key aspects of hospice during routine advance care planning sessions with patients and their future surrogate decision makers.

Integrating clinical and organizational ethics. A systems perspective can provide an antidote to the "silo" problem in clinical ethics consultations.

Traditionally, ethics consultations are conducted one case at a time. This typical approach addresses immediate needs pertinent to the case, but seldom looks toward preventing recurrences. The underlying problem is that clinical ethics and organizational ethics are still often regarded as separate areas with separate concerns. When it comes to ethics in health care, nothing helps clarify ideas like a case study. The autopsy case mentioned in this article demonstrates that clinical cases coming before an ethics committee are impeded in and influenced by a larger organizational context. The authors say that a "systems-oriented" perspective toward ethics consultation would help committee members view cases through the widest possible lens. This would enable committees to look at the larger system and thereby propose strategies for anticipated repeat problems.

Motivations for physician-assisted suicide.

OBJECTIVE: To obtain detailed narrative accounts of patients' motivations for pursuing physician-assisted suicide (PAS). DESIGN: Longitudinal case studies. PARTICIPANTS: Sixty individuals discussed 35 cases. Participants were recruited through advocacy organizations that counsel individuals interested in PAS, as well as hospices and grief counselors. SETTING: Participants' homes. MEASUREMENTS AND RESULTS: We conducted a content analysis of 159 semistructured interviews with patients and their family members, and family members of deceased patients, to characterize the issues associated with pursuit of PAS. Most patients deliberated about PAS over considerable lengths of time with repeated assessments of the benefits and burdens of their current experience. Most patients were motivated to engage in PAS due to illness-related experiences (e.g., fatigue, functional losses), a loss of their sense of self, and fears about the future. None of the patients were acutely depressed when planning PAS. CONCLUSIONS: Patients in this study engaged in PAS after a deliberative and thoughtful process. These motivating issues point to the importance of a broad approach in responding to a patient's request for PAS. The factors that motivate PAS can serve as an outline of issues to explore with patients about the far-reaching effects of illness, including the quality of the dying experience. The factors also identify challenges for quality palliative care: assessing patients holistically, conducting repeated assessments of patients' concerns over time, and tailoring care accordingly.

Changing trends in the microbiologic aspects of postcataract endophthalmitis.

OBJECTIVE: To analyze the microbiologic spectrum and in vitro susceptibility profiles over the last 11 years of organisms isolated from the vitreous of patients with endophthalmitis following cataract surgery. METHODS: Records of 497 consecutive patients treated at 1 institution for clinically suspected endophthalmitis following cataract surgery from July 1989 through June 2000 were reviewed. Results of microbiologic culture and in vitro antibiotic susceptibility testing from the periods 1989 to 1994 and 1995 to 2000 were compared. RESULTS: Between the 2 periods, there was a significant increase in the incidence of gram-positive bacteria (92%-97% of bacterial isolates). There was a significant increase in resistance among all bacterial isolates to ciprofloxacin (23%-37%; P = .02). There was increased resistance among coagulase-negative staphylococci to both ciprofloxacin (20%-38%) and cefazolin (19%-40%). Resistance to bacitracin, trimethoprim-sulfamethoxazole, and vancomycin remained unchanged. Vancomycin retained in vitro efficacy against more than 99% of gram-positive bacteria. Ceftazidime was effective against 100% of gram-negative bacteria tested. CONCLUSIONS: The spectrum of pathogens causing postcataract endophthalmitis is changing, and resistance to antibiotics used for its prophylaxis has grown. These findings may affect the empirical treatment of postcataract endophthalmitis, as well as the use and choice of antibiotics in patients undergoing cataract surgery.

Why now? Timing and circumstances of hastened deaths.

We interviewed 35 families to understand the timing and circumstances of hastened deaths. We estimated life expectancy for the 26 patients who hastened their deaths and used content analysis to identify patterns in their decisions. On average, patients had lived with their illness for 2.5 years and had actively planned their deaths for 3 months. Those with less than a week to live (n = 10) were 'dying and done,' having experienced a final functional loss that signaled the end. Those with <1 month (n = 8) were 'dying, but not fast enough.' Those with 1-6 months (n = 5) saw a 'looming crisis' on their horizon that would prohibit following through with their plans. The 3 patients with >6 months were 'not recognized by others as dying, but suffering just the same.' Clinicians should regularly assess where patients perceive they are in the dying process and ask about their comfort with the pace of dying to identify opportunities for intervention.

Good and bad dying from the perspective of terminally ill men.

BACKGROUND: Understanding the range of patients' views about good and bad deaths may be useful to clinicians caring for terminally ill patients. Our current understanding of good and bad deaths, however, comes primarily from input from families and clinicians. This study aimed to learn how terminally ill men conceptualize good and bad deaths. METHODS: We conducted semistructured interviews with 26 men identified as having terminal heart disease or cancer. Participants described good and bad deaths in a section of open-ended questions. Participants also answered closed-ended questions about specific end-of-life scenarios. The open-ended questions were tape recorded, transcribed, and analyzed using grounded theory methods. The closed-ended questions were analyzed using descriptive statistics. RESULTS: We found heterogeneity in responses to questions about good deaths, bad deaths, and preferred dying experiences. Participants voiced multiple reasons for why dying in one's sleep led to a good death and why prolonged dying or suffering led to a bad death. Participants did not hold uniform views about the presence of others at the very end of life or preferred location of dying. CONCLUSIONS: In discussing the end of life with terminally ill patients, clinicians may want to identify not only their patients' views of good and bad deaths but also how the identified attributes contribute to a good or bad death. The discussion can then focus on what might interfere with patients' attainment of their preferred dying experience and what may be available to help them achieve a death that is most consistent with their wishes.