Too Soon or Too Late: Rethinking the Significance of Six Months When Dementia Is a Primary Diagnosis.

Cultural narratives shape how we think about the world, including how we decide when the end of life begins. Hospice care has become an integral part of the end-of-life care in the United States, but as it has grown, its policies and practices have also imposed cultural narratives, like those associated with the "six-month rule" that the majority of the end of life takes place in the final six months of life. This idea is embedded in policies for a range of care practices and reimbursement processes, even though six months is not always a meaningful marker. In the case of people living with advanced dementia, six months is both too early in the trajectory to facilitate conversations and too late in the trajectory to ensure decision-making capacity. This essay encourages scholars and policy-makers to consider how cultural narratives may limit what they think is possible in care for people living with dementia.

What Can the Health Humanities Contribute to Our Societal Understanding of and Response to the Deaths of Despair Crisis?

Deaths of Despair (DoD), or mortality resulting from suicide, drug overdose, and alcohol-related liver disease, have been rising steadily in the United States over the last several decades. In 2020, a record 186,763 annual despair-related deaths were documented, contributing to the longest sustained decline in US life expectancy since 1915-1918. This forum feature considers how health humanities disciplines might fruitfully engage with this era-defining public health catastrophe and help society better understand and respond to the crisis.

Hospital and Health System Policies Concerning the California End of Life Option Act.

Background: The End of Life Option Act (EOLOA) legalized physician aid in dying for competent, terminally ill Californians in 2016. The law allows clinicians, hospitals, and health systems to decide whether to participate. About 4 in 10 California hospitals permit the EOLOA, but little is known about their approaches and concerns. Objective: Describe hospital EOLOA policies and challenges. Design and Measurements: Survey study of hospitals in California, administered September 2017 to March 2018. We describe hospital policies concerning the EOLOA and perform thematic analysis of open-ended questions about challenges, including availability of providers, process of implementing EOLOA, experiences of distress by providers and patients, and questions about medications. Results: Of 315 hospitals surveyed, 270 (86%) responded. Every surveyed hospital had established a position on the EOLOA. Among hospitals permitting EOLOA, 38% required safeguards not required in the law, 87% provided for referral to another provider if the patient's physician did not participate, and 65% counseled staff, if needed. Among hospitals not permitting the EOLOA, nearly all allowed providers to follow patients choosing to pursue the EOLOA elsewhere and most permitted a provider to refer to another provider or system. Most hospitals expressed concerns about implementation of the EOLOA and interest in sharing promising practices. Conclusions: This survey of California hospitals demonstrates considerable heterogeneity in implementing the EOLOA. For many Californians, access to the EOLOA depends on where one receives medical care. Implementation would be improved by hospitals and health systems sharing promising practices.

Expanded definitions of the 'good death'? Race, ethnicity and medical aid in dying.

The range of end-of-life options is expanding across North America. Specifically, medical aid in dying (AID), or the process by which a patient with a terminal illness may request medical assistance with hastening death, has recently become legal in eight jurisdictions in the United States and all of Canada. Debates about AID often rely on cultural constructions that define some deaths as 'good' and others as 'bad'. While research has found commonalities in how patients, family members and health care providers define good and bad deaths, these constructions likely vary across social groups. Because of this, the extent to which AID is seen as a route to the good death also likely varies across social groups. In this article, we analyse qualitative data from six focus groups (n = 39) across three racial and ethnic groups: African American, Latino and white Californians, just after a medical AID law was passed. We find that definitions of the 'good death' are nuanced within and between groups, suggesting that different groups evaluate medical AID in part through complex ideas about dying. These findings further conversations about racial and ethnic differences in choices about end-of-life options.

Improving End-of-Life Care for Diverse Populations: Communication, Competency, and System Supports.

BACKGROUND: While disparities in end-of-life care have been well-documented, explanations for the persistence of disparities are less clear. This study sought to examine diverse perceptions of end-of-life care, especially regarding how medical professionals can better serve all populations. OBJECTIVE: To investigate similarities and differences in end-of-life care preferences, across racial and ethnic groups. DESIGN: This work consists of a qualitative study utilizing in-depth focus group discussions. SETTING/PARTICIPANTS: Six community-based focus groups were conducted with a total of 39 participants. Two groups were composed of African American participants, 2 had Latino participants, and 2 groups had white participants. RESULTS: Analysis produced 3 major themes: (1) clear, comprehensive, and culturally relevant provider-patient communication regarding serious illness; (2) provider characteristics and competency; and (3) health system supports and barriers. Although all groups had individuals who expressed a strong preference for direct communication, individuals varied within groups. All groups discussed concerns that the costs of care are high and that financial considerations are given more importance than high-quality care. Groups diverged in their focus on provider characteristics and feelings of marginalization. African American and Latino groups emphasized a desire to match characteristics with providers, and African American groups discussed that their marginalization in the health-care system requires hypervigilance to receive high-quality care. CONCLUSIONS: Improvements in care would come from acknowledging diversity within groups, provider demonstration of comfort and competence, more effective care coordination, and recruitment of providers who share similar characteristics with the communities they serve.

Agency and Change in Healthcare Organizations: Workers' Attempts to Navigate Multiple Logics in Hospice Care.

There is no doubt that the organization of healthcare is currently shifting, partly in response to changing macrolevel policies. Studies of healthcare policies often do not consider healthcare workers' experiences of policy change, thus limiting our understanding of when and how policies work. This article uses longitudinal qualitative data, including participant observation and semistructured interviews with workers within hospice care as their organizations shifted in response to a Medicare policy change. Prior to the policy change, I find that the main innovation of hospice-the interdisciplinary team-is able to resist logics from the larger medical institution. However, when organizational pressures increase, managers and workers adjust in ways that reinforce medical logics and undermine the interdisciplinary team. These practices illustrate processes by which rationalization of healthcare affects workers' experiences and the type of care available to patients.

Local Leaders' Perspectives on Women Veterans' Health Care: What Would Ideal Look Like?

BACKGROUND: The Veterans Health Administration (VHA) faces challenges in providing comprehensive, gender-sensitive care for women. National policies have led to important advancements, but local leadership also plays a vital role in implementing changes and operationalizing national priorities. In this article, we explore the notions of ideal women veterans' health care articulated by women's health leaders at local VHA facilities and regional networks, with the goal of identifying elements that could inform practice and policy. METHODS: We conducted semistructured interviews with 86 local and regional women's health leaders at 12 VHA medical centers across four regions. At the conclusion of interviews about women's primary care, participants were asked to imagine "ideal care" for women veterans. Interviews were transcribed and coded using a hybrid inductive/deductive approach. RESULTS: In describing ideal care, participants commonly touched on whether women veterans should have separate primary care services from men; the need for childcare, expanded reproductive health services, resources, and staffing; geographic accessibility; the value of input from women veterans; the physical appearance of facilities; fostering active interest in women's health across providers and staff; and the relative priority of women's health at the VHA. CONCLUSIONS: Policy and practice changes to care for women veterans must be mindful of key stakeholders' vision for that care. Specific features of that vision include clinic construction that anticipates a growing patient population, providing childcare and expanded reproductive health services, ensuring adequate support staff, expanding mechanisms to incorporate women veterans' input, and fostering a culture oriented towards women's health at the organizational level.

Culture and Palliative Care: Preferences, Communication, Meaning, and Mutual Decision Making.

Palliative care is gaining acceptance across the world. However, even when palliative care resources exist, both the delivery and distribution of services too often are neither equitably nor acceptably provided to diverse population groups. The goal of this study was to illustrate tensions in the delivery of palliative care for diverse patient populations to help clinicians to improve care for all. We begin by defining and differentiating culture, race, and ethnicity, so that these terms-often used interchangeably-are not conflated and are more effectively used in caring for diverse populations. We then present examples from an integrative literature review of recent research on culture and palliative care to illustrate both how and why varied responses to pain and suffering occur in different patterns, focusing on four areas of palliative care: the formation of care preferences, communication patterns, different meanings of suffering, and decision-making processes about care. For each area, we provide international and multiethnic examples of variations that emphasize the need for personalization of care and the avoidance of stereotyping beliefs and practices without considering individual circumstances and life histories. We conclude with recommendations for improving palliative care research and practice with cultural perspectives, emphasizing the need to work in partnerships with patients, their family members, and communities to identify and negotiate culturally meaningful care, promote quality of life, and ensure the highest quality palliative care for all, both domestically and internationally.

Helpfulness, Trust, and Safety of Neighborhoods: Social Capital, Household Income, and Self-Reported Health of Older Adults.

BACKGROUND AND OBJECTIVES: Growing literature documents that where you live has an impact on your health, due in part to social capital. Building on social capital literature, we assess how subjective appraisals of neighborhood quality are associated with self-reported health (SRH) for older adults. RESEARCH DESIGN AND METHODS: Cross-sectional analysis of the 2014 California Health Interview Survey, a representative survey of diverse, noninstitutionalized California residents. We use three measures of neighborhood quality: trustworthy neighbors, helpful neighbors, and feeling safe. Using weighted ordinary least squares regression, we assess the associations of trust, helpfulness, and safety to SRH, controlling for neighborhood, demographic, and health care variables. We then examine how these associations vary by household income. RESULTS: We find that characterizing neighbors as helpful and feeling safe are associated with better SRH, even controlling for community, demographic, and health care variables. However, the importance of these dimensions varies across household income: helpfulness is positively associated, whereas trust is negatively associated with SRH for lower income residents; safety is positively associated with SRH in all but the lowest income residents. These findings show that social capital dimensions work differently from one another, and differentially affect the health of older adults. DISCUSSION AND IMPLICATIONS: Scholarly analyses of neighborhood effects should include a range of social capital measures and stratify by household income. Our findings may also inform priority setting for social capital programs, especially for older adults with limited economic resources. Policies and programs should consider actions that raise perceptions of helpfulness and safety.

A mixed methods study of emotional exhaustion: Energizing and depleting work within an innovative healthcare team.

This mixed methods study documents emotional exhaustion experiences among care team members during the development of an innovative team approach for caring for adults with serious illness. A mixed methods study design was employed to examine depleting work experiences that may produce emotional exhaustion, and energizing aspects of the work that may increase meaningfulness of work, thus reducing emotional exhaustion. The population studied included team members involved in care for adults with serious illness (n = 18). Team members were surveyed quarterly over an 18-month period using the Maslach Burnout Inventory (MBI). The MBI measures burnout, defined as the inability to continue work because of the interactional toll of the work. Analyses of MBI data show that although overall levels of burnout are low, 89% of team members reported moderate/high levels of emotional exhaustion during at least one survey period. In order to understand the kinds of work experiences that may produce or ameliorate emotional exhaustion, qualitative interviews were also conducted with team members at the end of the 18-month period. Major qualitative findings indicate that disputes within the team, environmental pressures, and standardisation of meaningful work leave team members feeling depleted. Having authentic relationships with patients, working as a team, believing in the care model, and practicing autonomy and creativity help team members to restore their emotional energy. Supports for team members' well-being are critical for continued innovation. We conclude with recommendations for improving team members' well-being.

User-centered design to improve clinical decision support in primary care.

BACKGROUND: A growing literature has demonstrated the ability of user-centered design to make clinical decision support systems more effective and easier to use. However, studies of user-centered design have rarely examined more than a handful of sites at a time, and have frequently neglected the implementation climate and organizational resources that influence clinical decision support. The inclusion of such factors was identified by a systematic review as "the most important improvement that can be made in health IT evaluations." OBJECTIVES: (1) Identify the prevalence of four user-centered design practices at United States Veterans Affairs (VA) primary care clinics and assess the perceived utility of clinical decision support at those clinics; (2) Evaluate the association between those user-centered design practices and the perceived utility of clinical decision support. METHODS: We analyzed clinic-level survey data collected in 2006-2007 from 170 VA primary care clinics. We examined four user-centered design practices: 1) pilot testing, 2) provider satisfaction assessment, 3) formal usability assessment, and 4) analysis of impact on performance improvement. We used a regression model to evaluate the association between user-centered design practices and the perceived utility of clinical decision support, while accounting for other important factors at those clinics, including implementation climate, available resources, and structural characteristics. We also examined associations separately at community-based clinics and at hospital-based clinics. RESULTS: User-centered design practices for clinical decision support varied across clinics: 74% conducted pilot testing, 62% conducted provider satisfaction assessment, 36% conducted a formal usability assessment, and 79% conducted an analysis of impact on performance improvement. Overall perceived utility of clinical decision support was high, with a mean rating of 4.17 (±.67) out of 5 on a composite measure. "Analysis of impact on performance improvement" was the only user-centered design practice significantly associated with perceived utility of clinical decision support, b=.47 (p<.001). This association was present in hospital-based clinics, b=.34 (p<.05), but was stronger at community-based clinics, b=.61 (p<.001). CONCLUSIONS: Our findings are highly supportive of the practice of analyzing the impact of clinical decision support on performance metrics. This was the most common user-centered design practice in our study, and was the practice associated with higher perceived utility of clinical decision support. This practice may be particularly helpful at community-based clinics, which are typically less connected to VA medical center resources.

The Power of Community Voices for Enhancing Community Health Needs Assessments.

As required by the Affordable Care Act, Community Health Needs Assessments (CHNAs) are formalized processes nonprofit hospitals must perform at least every 3 years. CHNAs are designed to help hospitals better tailor health services to the needs of local residents. However, CHNAs most often use quantitative, population-level data, and rarely incorporate the actual voices of local community members. This is particularly a problem for meeting the needs of residents who are also racial or ethnic minorities. This article discusses one model for integrating residents' voices into the CHNA process. In this model, we videotaped interviews with community members and then coded and analyzed interview data to identify underlying themes. We created a short video aimed at starting conversations about community members' concerns. In addition to demonstrating how other nonprofit hospitals may use qualitative data in the CHNA process, this article illustrates how adding qualitative data may change how we think about health promotion. We find that community members requested that health care providers view culture as a health resource, foster community connections, and be present in the community.

Implementing Aid in Dying in California: Experiences from Other States Indicates the Need for Strong Implementation Guidance.

In late 2015, California passed the End of Life Option Act (AB 15), which allows residents at the terminal stage of an illness to request a prescription for medications meant to hasten death. As California seeks to implement the law in June 2016, findings from other states that practice aid in dying (AID) may guide implementation. This policy brief provides an overview of the use of AID, outlines outstanding questions about practice and ethics, and recommends steps for improving California's implementation of AB 15. Specifically, the implementation of AB 15 would be improved by adjusting surveillance data-collection requirements and encouraging additional research investment, using the legalization of AID to improve knowledge of and practices for end-of-life care generally, and creating ongoing educational opportunities for providers and the general public.

Building New Teams for Late Life Care: Lessons From LifeCourse.

This article details team development within a longitudinal cohort study designed to bring team-based, whole person care early in the course of serious illness. The primary innovation of this approach is the use of nonclinically trained care guides who support patients and family members by focusing care around what matters most to patients, linking to resources, collaborating with other providers, and offering continuity through care transitions. By describing the development of this team, we document the kinds of questions others may ask during the process of team creation.

Malignant hyperthermia crisis: optimizing patient outcomes through simulation and interdisciplinary collaboration.

Malignant hyperthermia (MH) is a rare, life-threatening event. Many clinicians are unprepared to manage an MH crisis in the perioperative setting because it requires the use of low-frequency, high-risk skills and procedures. Simulation is a recognized educational method for cumulative and integrative learning in a safe environment that resembles real-life clinical scenarios. The aim of this quality improvement project was to provide simulation-based learning to perioperative personnel to educate them in the early recognition, treatment, and management of MH. An interdisciplinary team developed an MH education plan. Implementation of the plan involved a two-part training: an educational session, and a role-playing scenario using high-fidelity OR simulation. Simulation teaching provided OR personnel with an opportunity for skill development, teamwork, interdisciplinary communication, and problem solving. Personnel responded favorably and identified positive outcomes, such as role clarity, improved anticipatory response, and overall team cohesion. In addition, the project included updating the MH cart and writing the hospital's MH policy.