Exploring expanded interdisciplinary roles in goals of care conversations in a national goals of care initiative: A qualitative approach.

BACKGROUND: The United States Veterans Health Administration National Center for Ethics in Health Care implemented the Life-Sustaining Treatment Decisions Initiative throughout the Veterans Health Administration health care system in 2017. This policy encourages goals of care conversations, referring to conversations about patient's treatment and end-of-life wishes for life-sustaining treatments, among Veterans with serious illnesses. A key component of the initiative is expanding interdisciplinary provider roles in having goals of care conversations. AIM: Use organizational role theory to explore medical center experiences with expanding interdisciplinary roles in the implementation of a goals of care initiative. DESIGN: A qualitative thematic analysis of semi-structured interviews. SETTING/PARTICIPANTS: Initial participants were recruited using purposive sampling of local medical center champions. Snowball sampling identified additional participants. Participants included thirty-one interdisciplinary providers from 12 geographically diverse initiative pilot and spread medical centers. RESULTS: Five themes were identified. Expanding provider roles in goals of care conversations (1) involves organizational culture change; (2) is influenced by medical center leadership; (3) is supported by provider role readiness; (4) benefits from cross-disciplinary role agreement; and (5) can "overwhelm" providers. CONCLUSIONS: Organizational role theory is a helpful framework for exploring interdisciplinary roles in a goals of care initiative. Support and recognition of provider role expansion in goals of care conversations was important for the adoption of a goals of care initiative. Actionable strategies, including multi-level leadership support and the use of interdisciplinary champions, facilitate role change and have potential to strengthen uptake of a goals of care initiative.

Between Usual and Crisis Phases of a Public Health Emergency: The Mediating Role of Contingency Measures.

Much of the sustained attention on pandemic preparedness has focused on the ethical justification for plans for the "crisis" phase of a surge when, despite augmentation efforts, the demand for life-saving resources outstrips supply. The ethical frameworks that should guide planning and implementation of the "contingency" phase of a public health emergency are less well described. The contingency phase is when strategies to augment staff, space, and supplies are systematically deployed to forestall critical resource scarcity, reduce disproportionate harm to patients and health care providers, and provide patient care that remains functionally equivalent to conventional practice. We describe an ethical framework to inform planning and implementation for COVID-19 contingency surge responses and apply this framework to 3 use cases. Examining the unique ethical challenges of this mediating phase will facilitate proactive ethics conversations about healthcare operations during the contingency phase and ideally lead to ethically stronger health care practices.

A Comprehensive Approach to Eliciting, Documenting, and Honoring Patient Wishes for Care Near the End of Life: The Veterans Health Administration's Life-Sustaining Treatment Decisions Initiative.

BACKGROUND: There is an emerging consensus that clinicians should initiate a proactive "goals of care conversation" (GoCC) with patients whose serious illness is likely to involve decisions about life-sustaining treatments (LSTs) such as artificial nutrition, ventilator support, or cardiopulmonary resuscitation. This conversation is intended to elicit the patient's values, goals, and preferences as a basis for shared decisions about treatment planning. LST decisions are often postponed until the patient is within days or even hours of death and no longer able to make his or her goals and preferences known. Decisions then fall to surrogates who may be uncertain about what the patient would have wanted. LIFE-SUSTAINING TREATMENT DECISIONS INITIATIVE (LSTDI): The Veterans Health Administration's Life-Sustaining Treatment Decisions Initiative (LSTDI) was designed to ensure that patients' goals, values, and preferences for LSTs are elicited, documented, and honored across the continuum of care. The LSTDI includes a coordinated set of evidence-based strategies that consists of enterprisewide practice standards for conducting, documenting, and supporting high-quality GoCCs; staff training to enhance proficiency in conducting, documenting, and supporting GoCCs; standardized, durable electronic health record tools for documenting GoCCs; monitoring and information technology tools to support implementation and improvement; a two-year multifacility demonstration project conducted to test and refine strategies and tools and to identify strong practices; and a program of study to evaluate the LSTDI and identify strategies critical to improving care for patients with serious illness. CONCLUSION: The LSTDI moves beyond traditional advance care planning by addressing well-documented barriers to goal-concordant care for seriously ill patients.

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.

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.

The Time Is Now: Bioethics and LGBT Issues.

Our goal in producing this special issue is to encourage our colleagues to incorporate topics related to LGBT populations into bioethics curricula and scholarship. Bioethics has only rarely examined the ways in which law and medicine have defined, regulated, and often oppressed sexual minorities. This is an error on the part of bioethics. Medicine and law have served in the past as society's enforcement arm toward sexual minorities, in ways that robbed many people of their dignity. We feel that bioethics has an obligation to discuss that history and to help us as a society take responsibility for it. We can address only a small number of topics in this special issue of the Hastings Center Report, and we selected topics we believe will stimulate discourse. Andrew Solomon offers an elegant overview of the challenges that bioethics faces in articulating a solid basis for LGBT rights. Timothy F. Murphy asks whether bioethics still faces issues related to lesbian, gay, and bisexual people, given the deletion of homosexuality as a disease and the progress toward same-sex marriage. Jamie Lindemann Nelson's essay addresses the search for identity for transgender persons and the role of science in that search. Two articles, those by Brendan S. Abel and by Jack Drescher and Jack Pula, take up the complex issue of medical treatment for children who reject their assigned birth gender. Celia B. Fisher and Brian Mustanski address the special challenges of engaging LGBT youth in research, balancing the need for better information about this vulnerable group against the existing restrictions on research involving children. Tia Powell and Edward Stein consider the merits of legal bans on psychotherapies intended to change sexual orientation, particularly in the light of current research on orientation. Mary Beth Foglia and Karen I. Fredricksen-Goldsen highlight health disparities and resilience among LGBT older adults and then discuss the role of nonconscious bias in perpetuating disparities. Stephan Davis and Nancy Berlinger assess the challenges of access to care and health policy for transgender persons. Edward J. Callahan et al. tackle the ways in which diverse aspects of medicine should change to better incorporate the needs of LGBT patients, including through use of the electronic medical record, education of health professionals, and recruitment efforts for LGBT health professionals. Virginia Ashby Sharpe and Uchenna S. Uchendu describe multifaceted efforts within Veterans Administration facilities to create change for LGBT veterans across the largest integrated health care network in the United States. Lance Wahlert and Autumn Fiester find a mixed record in the use of case studies in teaching about LGBT issues.

Health Disparities among LGBT Older Adults and the Role of Nonconscious Bias.

This paper describes the significance of key empirical findings from the recent and landmark study Caring and Aging with Pride: The National Health, Aging and Sexuality Study (with Karen I. Fredriksen-Goldsen as the principal investigator), on lesbian, gay, bisexual, and transgender aging and health disparities. We will illustrate these findings with select quotations from study participants and show how nonconscious bias (i.e., activation of negative stereotypes outside conscious awareness) in the clinical encounter and health care setting can threaten shared decision-making and perpetuate health disparities among LGBT older adults. We recognize that clinical ethicists are not immune from nonconscious bias but maintain that they are well situated to recognize bias and resulting injustice by virtue of their training. Further, we discuss how clinical ethicists can influence the organization's ethical culture and environment to improve the quality and acceptability of health care for LGBT older adults.

Patients' experiences with disclosure of a large-scale adverse event.

BACKGROUND: Hospitals face a disclosure dilemma when large-scale adverse events affect multiple patients and the chance of harm is extremely low. Understanding the perspectives of patients who have received disclosures following such events could help institutions develop communication plans that are commensurate with the perceived or real harm and scale of the event. METHODS: A mailed survey was conducted in 2008 of 266 University of Washington Medical Center (UWMC) patients who received written disclosure in 2004 about a large-scale, low-harm/low-risk adverse event involving an incomplete endoscope cleaning process. The survey measured patients' satisfaction with this disclosure, their concerns about healthcare outcomes, and their recommendations for future communication, given similar circumstances. RESULTS: Surveys were received from 127 of 266 (48 percent) of eligible respondents; 98 percent thought that UWMC was right to inform them about this event, and mean satisfaction with the disclosure was 7.7 on a 0 to 10 scale. Of the 127 respondents, 64 percent were somewhat or very concerned that the endoscope cleaning problem might cause them health problems; 60 percent reported their impressions of UWMC's honesty and integrity had increased; 31 percent said their perceptions of the quality of care had increased; 94 percent agreed that institutions should tell patients about any error in their care, even when the risk of harm was low, although 28 percent agreed that such notifications would make them anxious. Respondents who reported concern that the event could cause them health problems were less likely to be satisfied with the institution's disclosure. Patients cited their right to know information material to their own health and healthcare as an important reason for disclosure. CONCLUSION: Recipients of disclosure of a large-scale, low-harm/low-risk event overwhelmingly supported being told of the event and endorsed notification of patients for similar events in the future. Although informing patients may cause concern for some, institutions should ensure their disclosure policies and procedures reflect their patients' preferences.

Preventive ethics: addressing ethics quality gaps on a systems level.

BACKGROUND: Preventive ethics (PE) is a key component of IntegratedEthics (IE), an innovative model developed by the Veterans Health Administration (VA)'s National Center for Ethics in Health Care which establishes a comprehensive, systematic, integrated approach to ethics in health care organizations. Since early 2008, IE has been implemented throughout all 153 medical centers and 21 regional networks within the US Department of Veterans Affairs (VA) health care system. ISSUES: A STEP-BY-STEP APPROACH TO ETHICS QUALITY IMPROVEMENT: PE employs a systematic, step-by-step process improvement approach called ISSUES: Identify an issue, Study the issue, Select a strategy, Undertake a plan, Evaluate and adjust, and Sustain and spread. After the ethics quality gap is described, a measureable and achievable improvement goal based on the gap is developed. One of the most challenging aspects of describing an ethics quality gap is to establish an appropriate ethical standard on which to base the operational definition of best ethics practice. PRACTICAL STEPS TO DEVELOPING A PREVENTIVE ETHICS FUNCTION: Within the VA's IE model, PE is situated as a subcommittee of the IE council, which is chaired by the facility director (equivalent to a hospital chief executive officer) and oversees all aspects of the organization's ethics program, including ethical leadership, ethics consultation, and PE. Each VA medical center is required to have a PE team led and managed by a PE coordinator and may need to address ethics issues across the full range of health care ethics domains. CONCLUSIONS: The VA's IE model establishes a robust conceptual framework, along with concrete tools and resources, to integrate PE concepts into the day-to-day operations of a health care organization and is directly transferrable to other health care organizations and systems.

Associations between the Veterans Health Administration's Life-Sustaining Treatment Decisions Initiative and Quality of Care at the End of Life.

Background: In 2017, Veterans Health Administration (VHA) implemented the Life-Sustaining Treatment Decisions Initiative (LSTDI) to promote goals-of-care conversations (GoCC) between seriously ill patients and their practitioners, to document patient preferences in the electronic health record, and to provide care consistent with patients' goals. Objectives: We evaluated the associations between this initiative and quality of care in the last month of life (i.e., emergency department/intensive care unit [ED/ICU] visits and hospice consultations). Design: We conducted patient-level propensity score analyses to evaluate the associations between LSTDI and care utilization in the last 30 days of life. The primary exposure was a three-level factor: no GoCC (reference group), GoCC with Full Code, and GoCC with do not resuscitate (DNR). The outcomes were ED/ICU visits and hospice consultations within 30 days of death. Setting/Subjects: A total of 44,320 patients receiving care in Veterans (VA), who were older than 18, and who died and had a completed encounter within 24 months of death in a VA primary care, mental health, or medical specialty between January 2017 and December 2019. Results: Patients with a documented GoCC and DNR code status had decreased risk of ED visits (odds ratio [OR] = 0.6, 89% credible intervals [CI] = [0.57-0.64]) and ICU visits (OR = 0.49, 89% CI = [0.45-0.53]), and increased rates of hospice visits (ß = 2.18, 89% CI = [2.11-2.26]) compared with patients with no GoCC. Conclusion: The LSTDI had a positive impact by eliciting and documenting patient preferences for care at the end of life and quality of care in the last month of life. We observed associations between care preferences and ED/ICU visits and hospice consultations within 30 days of death. Further research should address the associations between LSTDI and use of palliative care, and outcomes associated with limits to specific life-sustaining treatments such as mechanical ventilation, artificial nutrition, and hydration.

Impact of Informed Consent and Education on Care Engagement After Opioid Initiation in the Veterans Health Administration.

Objective: To ensure all patients receiving long-term opioid therapy (LTOT) understand the risks, benefits and treatment alternatives, the Veterans Health Administration (VHA) released a national policy in 2014 to standardize a signature informed consent (SIC) process. We evaluated the impact of this policy on medical follow-up after LTOT initiation, a guideline recommended practice. Methods: Using VHA administrative data, we identified patients initiating LTOT between May 2013 and May 2016. We used an interrupted time series design to compare the monthly rates of medical follow-up within 30 days and primary care visits within 3 months after LTOT initiation across three periods: 12 months before the policy (Year 1); 12 months after policy release (Year 2); and 12-24 months after policy release, when the SIC process was mandatory (Year 3). Results: Among the 409,895 patients who experienced 758,416 LTOT initiations, medical follow-up within 30 days and primary care engagement within 3 months increased by 4% between Year 1 and Year 3. Compared to Year 1, patients in Year 3 were 1.12 times more likely to have any medical follow-up (95% CI: 1.10, 1.13) and 1.13 times more likely to have a primary care visit (95% CI: 1.12, 1.15). Facilities with a greater proportion of patients receiving SIC had increased medical follow-up (RR: 1.04, 95% CI: 1.01, 1.07) and primary care engagement (RR: 1.06, 95% CI: 1.03, 1.10). Conclusion: The VHA's SIC policy is associated with increased medical follow-up among patients initiating LTOT, which may result in improved patient safety and has implications for other healthcare settings.

The VA Life-Sustaining Treatment Decisions Initiative: A qualitative analysis of veterans with advanced kidney disease.

BACKGROUND: Documentation of patients' goals of care is integral to promoting goal-concordant care. In 2017, the Department of Veterans Affairs (VA) launched a system-wide initiative to standardize documentation of patients' preferences for life-sustaining treatments (LST) and related goals-of-care conversations (GoCC) that included using a note template in its national electronic medical record system. We describe implementation of the LST note based on documentation in the medical records of patients with advanced kidney disease, a group that has traditionally experienced highly intensive patterns of care. METHODS: We performed a qualitative analysis of documentation in the VA electronic medical record for a national random sample of 500 adults with advanced kidney disease for whom at least one LST note was completed between July 2018 and March 2019 to identify prominent themes pertaining to the content and context of LST notes. RESULTS: During the observation period, a total of 723 (mean 1.5, range 1-6) LST notes were completed for this cohort. Two themes emerged from the analysis: (1) Reactive approach: LST notes were largely completed in response to medical crises, in which they focused on short-term goals and preferences rather than patients' broader health and goals, or certain clinical encounters designated by the initiative as "triggering events" for LST note completion; (2) Practitioner-driven: Documentation suggested that practitioners would attempt to engage patients/surrogates in GoCC to lay out treatment options in order to move care forward, but patients/surrogates sometimes appeared reluctant to engage in GoCC and had difficulty communicating in ways that practitioners could understand. CONCLUSIONS: Standardized documentation of patients' treatment preferences and related GoCC was used to inform in-the-moment decision-making during acute illness and certain junctures in care. There is opportunity to expand standardized documentation practices and related GoCC to address patients'/surrogates' broader health concerns and goals and to enhance their engagement in these processes.

Preferences Elicited and Respected for Seriously Ill Veterans through Enhanced Decision-Making (PERSIVED): a protocol for an implementation study in the Veterans Health Administration.

BACKGROUND: Empirical evidence supports the use of structured goals of care conversations and documentation of life-sustaining treatment (LST) preferences in durable, accessible, and actionable orders to improve the care for people living with serious illness. As the largest integrated healthcare system in the USA, the Veterans Health Administration (VA) provides an excellent environment to test implementation strategies that promote this evidence-based practice. The Preferences Elicited and Respected for Seriously Ill Veterans through Enhanced Decision-Making (PERSIVED) program seeks to improve care outcomes for seriously ill Veterans by supporting efforts to conduct goals of care conversations, systematically document LST preferences, and ensure timely and accurate communication about preferences across VA and non-VA settings. METHODS: PERSIVED encompasses two separate but related implementation projects that support the same evidence-based practice. Project 1 will enroll 12 VA Home Based Primary Care (HBPC) programs and Project 2 will enroll six VA Community Nursing Home (CNH) programs. Both projects begin with a pre-implementation phase during which data from diverse stakeholders are gathered to identify barriers and facilitators to adoption of the LST evidence-based practice. This baseline assessment is used to tailor quality improvement activities using audit with feedback and implementation facilitation during the implementation phase. Site champions serve as the lynchpin between the PERSIVED project team and site personnel. PERSIVED teams support site champions through monthly coaching sessions. At the end of implementation, baseline site process maps are updated to reflect new steps and procedures to ensure timely conversations and documentation of treatment preferences. During the sustainability phase, intense engagement with champions ends, at which point champions work independently to maintain and improve processes and outcomes. Ongoing process evaluation, guided by the RE-AIM framework, is used to monitor Reach, Adoption, Implementation, and Maintenance outcomes. Effectiveness will be assessed using several endorsed clinical metrics for seriously ill populations. DISCUSSION: The PERSIVED program aims to prevent potentially burdensome LSTs by consistently eliciting and documenting values, goals, and treatment preferences of seriously ill Veterans. Working with clinical operational partners, we will apply our findings to HBPC and CNH programs throughout the national VA healthcare system during a future scale-out period.

Evaluating implementation strategies to support documentation of veterans' care preferences.

OBJECTIVE: To evaluate the effectiveness of feedback reports and feedback reports + external facilitation on completion of life-sustaining treatment (LST) note the template and durable medical orders. This quality improvement program supported the national roll-out of the Veterans Health Administration (VA) LST Decisions Initiative (LSTDI), which aims to ensure that seriously-ill veterans have care goals and LST decisions elicited and documented. DATA SOURCES: Primary data from national databases for VA nursing homes (called Community Living Centers [CLCs]) from 2018 to 2020. STUDY DESIGN: In one project, we distributed monthly feedback reports summarizing LST template completion rates to 12 sites as the sole implementation strategy. In the second involving five sites, we distributed similar feedback reports and provided robust external facilitation, which included coaching, education, and learning collaboratives. For each project, principal component analyses matched intervention to comparison sites, and interrupted time series/segmented regression analyses evaluated the differences in LSTDI template completion rates between intervention and comparison sites. DATA COLLECTION METHODS: Data were extracted from national databases in addition to interviews and surveys in a mixed-methods process evaluation. PRINCIPAL FINDINGS: LSTDI template completion rose from 0% to about 80% throughout the study period in both projects' intervention and comparison CLCs. There were small but statistically significant differences for feedback reports alone (comparison sites performed better, coefficient estimate 3.48, standard error 0.99 for the difference between groups in change in trend) and feedback reports + external facilitation (intervention sites performed better, coefficient estimate -2.38, standard error 0.72). CONCLUSIONS: Feedback reports + external facilitation was associated with a small but statistically significant improvement in outcomes compared with comparison sites. The large increases in completion rates are likely due to the well-planned national roll-out of the LSTDI. This finding suggests that when dissemination and support for widespread implementation are present and system-mandated, significant enhancements in the adoption of evidence-based practices may require more intensive support.

An Exploratory Study of Goals of Care Conversations Initiated with Seriously Ill Veterans in the Emergency Room.

Background: Emergency department (ED) visits are common for older patients with chronic, life-limiting illnesses and may offer a valuable opportunity for clinicians to initiate proactive goals of care conversations (GoCC) to ensure end-of-life care that aligns with the patients' values, goals, and preferences. Objectives: The purpose of this study is to assess whether GoCC are occurring with patients in Department of Veteran Affairs (VA) EDs, to characterize these patients' goals of care and life-sustaining treatment (LST) decisions, and to examine the extent to which palliative or hospice consultations occur following the ED visit. Design: We conducted a cross-sectional retrospective study using health record data. Settings/Subjects: A total of 10,780 patients receiving care in VA, whose first GoCC occurred during an ED visit. Results: Of the patients in the study, approximately half were at least 70 years of age, three-quarters were white, and half had multiple serious disease comorbidities. The percentage of patients who desired cardiopulmonary resuscitation was lower among the highest risk (i.e., of hospitalization and death) patients (64% vs. 51%). The percentage of patients wanting other LSTs (e.g., mechanical ventilation) was higher among the lowest risk patients; and the percentage of patients requesting limits to LSTs was highest among higher risk patients. Eighteen percent of patients had a palliative or hospice care consult within three months of their ED visit. Conclusions: In this study, we verified that GoCC are being initiated in the ED with Veterans at differing stages in their illness trajectory and that higher proportions of higher risk patients preferred to limit LSTs.