Race Dialogues and Potential Application in Clinical Environments: A Scoping Review.

BACKGROUND: Race dialogues, conversations about race and racism among individuals holding different racial identities, have been proposed as one component of addressing racism in medicine and improving the experience of racially minoritized patients. Drawing on work from several fields, we aimed to assess the scope of the literature on race dialogues and to describe potential benefits, best practices, and challenges of conducting such dialogues. Ultimately, our goal was to explore the potential role of race dialogues in medical education and clinical practice. METHODS: Our scoping review included articles published prior to June 2, 2022, in the biomedicine, psychology, nursing and allied health, and education literatures. Ultimately, 54 articles were included in analysis, all of which pertained to conversations about race occurring between adults possessing different racial identities. We engaged in an interactive group process to identify key takeaways from each article and synthesize cross-cutting themes. RESULTS: Emergent themes reflected the processes of preparing, leading, and following up race dialogues. Preparing required significant personal introspection, logistical organization, and intentional framing of the conversation. Leading safe and successful race dialogues necessitated trauma-informed practices, addressing microaggressions as they arose, welcoming participation and emotions, and centering the experience of individuals with minoritized identities. Longitudinal experiences and efforts to evaluate the quality of race dialogues were crucial to ensuring meaningful impact. DISCUSSION: Supporting race dialogues within medicine has the potential to promote a more inclusive and justice-oriented workforce, strengthen relationships amongst colleagues, and improve care for patients with racially minoritized identities. Potential levers for supporting race dialogues include high-quality racial justice curricula at every level of medical education and valuation of racial consciousness in admissions and hiring processes. All efforts to support race dialogues must center and uplift those with racially minoritized identities.

Palliative Care Early in the Care Continuum among Patients with Serious Respiratory Illness: An Official ATS/AAHPM/HPNA/SWHPN Policy Statement.

Background: Patients with serious respiratory illness and their caregivers suffer considerable burdens, and palliative care is a fundamental right for anyone who needs it. However, the overwhelming majority of patients do not receive timely palliative care before the end of life, despite robust evidence for improved outcomes. Goals: This policy statement by the American Thoracic Society (ATS) and partnering societies advocates for improved integration of high-quality palliative care early in the care continuum for patients with serious respiratory illness and their caregivers and provides clinicians and policymakers with a framework to accomplish this. Methods: An international and interprofessional expert committee, including patients and caregivers, achieved consensus across a diverse working group representing pulmonary-critical care, palliative care, bioethics, health law and policy, geriatrics, nursing, physiotherapy, social work, pharmacy, patient advocacy, psychology, and sociology. Results: The committee developed fundamental values, principles, and policy recommendations for integrating palliative care in serious respiratory illness care across seven domains: 1) delivery models, 2) comprehensive symptom assessment and management, 3) advance care planning and goals of care discussions, 4) caregiver support, 5) health disparities, 6) mass casualty events and emergency preparedness, and 7) research priorities. The recommendations encourage timely integration of palliative care, promote innovative primary and secondary or specialist palliative care delivery models, and advocate for research and policy initiatives to improve the availability and quality of palliative care for patients and their caregivers. Conclusions: This multisociety policy statement establishes a framework for early palliative care in serious respiratory illness and provides guidance for pulmonary-critical care clinicians and policymakers for its proactive integration.

The associations between unmet needs with protective factors, risk factors and outcomes among care partners of community-dwelling persons living with dementia.

OBJECTIVES: Describe the prevalence and types of unmet needs among community-dwelling dementia care partners (CPs) and determine associations between unmet needs with protective factors, risk factors and outcomes. METHOD: A cross-sectional analysis of 638 racially and cognitively diverse community-dwelling persons living with dementia (PLWD) and their CPs participating in a comprehensive in-home assessment of dementia-related needs. Unmet CP needs (19 items, 6 domains) were rated by a clinician using the Johns Hopkins Dementia Care Needs Assessment (JHDCNA). Multivariate linear regression models were used to examine associations between total percent unmet CP needs with demographic, protective and risk factors. RESULTS: Nearly all CPs had at least one unmet need (99.53%), with a mean of 5.7 (±2.6). The most common domains with ≥1 unmet need were memory disorder education, care skills and knowledge of resources (98%), legal issues/concerns (73.8%), CP mental health (44.6%) and access to informal support (42.7%). Adjusted multivariate models suggest the strongest consistent predictive factors relate to informal emotional support, CP physical health, use or difficulty getting formal services/supports (both for CPs and PLWD), and CP time spent with PLWD. Greater levels of unmet needs were associated with worse PLWD outcomes and CP outcomes, after adjusting for demographics. CONCLUSIONS: CPs have high rates of diverse, but modifiable unmet needs. Data suggest optimal approaches to dementia care should take a family-centered home-based approach that includes routine CP needs assessment, offer targeted interventions that include both traditional medical supports as well as strategies to increase and leverage informal social networks, and ones that can bridge and coordinate medical with non-medical supports. These findings can be used to inform new approaches to support CPs, improve PLWD and CP outcomes, and target groups most at risk for inequities.

Implementation and Effectiveness of Integrating Palliative Care Into Ambulatory Care of Noncancer Serious Chronic Illness: Mixed Methods Review and Meta-Analysis.

PURPOSE: To perform a mixed methods review to evaluate the effectiveness and implementation of models for integrating palliative care into ambulatory care for US adults with noncancer serious chronic illness. METHODS: We searched 3 electronic databases from January 2000 to May 2020 and included qualitative, mixed methods studies and randomized and nonrandomized controlled trials. For each study, 2 reviewers abstracted data and independently assessed for quality. We conducted meta-analyses as appropriate and graded strength of evidence (SOE) for quantitative outcomes. RESULTS: Quantitative analysis included 14 studies of 2,934 patients. Compared to usual care, models evaluated were not more effective for improving patient health-related quality of life (HRQOL) (standardized mean difference [SMD] of 4 of 8 studies, 0.19; 95% CI, ‒0.03 to 0.41) (SOE: moderate) or for patient depressive symptom scores (SMD of 3 of 9 studies, ‒0.09; 95% CI, ‒0.35 to 0.16) (SOE: moderate). Models might have little to no effect on patient satisfaction (SOE: low) but were more effective for increasing advance directive (AD) documentation (relative risk, 1.62; 95% CI, 1.35 to 1.94) (SOE: moderate). Qualitative analysis included 5 studies of 146 patients. Patient preferences for appropriate timing of palliative care varied; costs, additional visits, and travel were considered barriers to implementation. CONCLUSION: Models might have little to no effect on decreasing overall symptom burden and were not more effective than usual care for improving HRQOL or depressive symptom scores but were more effective for increasing AD documentation. Additional research should focus on identifying and addressing characteristics and implementation factors critical to integrating models to improve ambulatory, patient-centered outcomes.

What does the word healing mean to you? Perceptions of patients with life-limiting illness.

INTRODUCTION: There is a growing consensus that patient-centered care is more effective in treating patients than a strictly biomedical model, where there are known challenges to involving the patient in assessments, treatment goals, and determining preferred outcomes. OBJECTIVES: The current study seeks to integrate patient values and perspectives by exploring how people diagnosed with a life-limiting disease define healing in their own words. METHODS: As a part of a larger study that included cognitive interviewing, we asked the question "what does the word healing mean to you?" Data were collected during face-to-face interviews with patients from three metropolitan healthcare facilities. RESULTS: Thirty participants responded to the question "what does healing mean to you?" Seven themes were identified through the data analysis. These themes include acceptance, feeling better, pain, social support, process, religion/spirituality, and make whole. The feeling better, pain, and process themes have subthemes. SIGNIFICANCE OF RESULTS: Probing to understand patient perspectives and how to provide a holistic approach to care is essential to patient treatment. Patients defined healing in a broader way than how it is typically defined in literature. The patients' definitions provide greater insight into perceptions and expectations regarding the healing process.

A mixed-methods exploration of faith, spirituality, and health program interest among older African Americans with HIV.

BACKGROUND: Persons living with HIV (PLWH) are living into old age with more complex care needs that non-PLWH. Promoting quality of life should include advance care planning (ACP) education, particularly among African Americans. We explored faith/spirituality-related correlates of interest in a future quality of life program among African American PLWH. METHODS: Data were from the AFFIRM study. Participants were recruited from an HIV clinic and completed surveys, interviews, and focus groups. Quantitative analyses included Logistic regression. Qualitative data were coded using grounded theory. RESULTS: Nearly half of participants had less than a high school education (47.9%), and roughly 90% had heard of at least one ACP-related topic (86.6%; N = 315). Qualitative themes related to quality of life and faith/spirituality were: (1) Coping with life challenges; (2) Motivation to improve health for loved ones; and (3) Support programs for people with HIV (N = 39). Satisfaction with religion/spirituality was associated with greater interest in a future program (p < .05); discussing ACP before getting sick was associated with less interest (p < .05). CONCLUSIONS/PRACTICE IMPLICATIONS: Prioritizing skill-building and grounding in spirituality with input from faith leaders can reduce ACP inequities and improve health outcomes among African Americans.

'The Woman Gives': Exploring gender and relationship factors in HIV advance care planning among African American caregivers.

AIMS AND OBJECTIVE: Advance care planning (ACP) is the communication process of documenting future healthcare preferences in case patients are unable to make healthcare decisions for themselves. Research suggests ACP discussions among persons living with HIV (PLHIV) are infrequent overall and may differ by gender and/or race. BACKGROUND: Previous literature has displayed that African Americans are less likely than other racial groups to use advanced care planning, palliative care or hospice, but does not conclusively account for ACP among PLHIV. African American PLHIV rely on informal care that may be differ by gender and represents an important pathway to increase ACP. DESIGN: The study was mixed methods and observational. METHODS: Participants completed self-report surveys (N = 311) and were interviewed (n = 11). Poisson regression (quantitative) and grounded theory analyses (qualitative) were implemented, using COREQ checklist principles to ensure study rigor. RESULTS: Less than half had discussed ACP (41.2%; N = 267). More ACP knowledge predicted 76% lower likelihood of ACP discussions among women. Men who spent more time caregiving in a given week were nearly 3 times more likely to discuss ACP than men who spent less time caregiving. Women were more likely than men to be caregivers and were also expected to serve in that role more than men, which was qualitatively described as 'being a woman'. CONCLUSIONS: The present study is one of few studies exploring ACP among caregivers in African American populations hardest hit by HIV. Results suggest that ACP skill building and education are critical for African Americans living with HIV to promote ACP discussions with their caregivers. Knowledge about ACP topics was low overall even when healthcare had recently been accessed. Support reciprocity and gender-specific communication skill building may facilitate ACP in African American HIV informal caregiving relationships. RELEVANCE TO CLINICAL PRACTICE: Results underscore the need for ACP education which includes healthcare providers and caregivers, given African Americans' preference for life-sustaining treatments at end-of-life. ACP is crucial now more than ever, as COVID-19 complicates care for older adults with HIV at high risk of complications.

Church leaders and parishioners speak out about the role of the church in advance care planning and end-of-life care.

OBJECTIVE: Despite the increased focus on improving advance care planning (ACP) in African Americans through community partnerships, little published research focused on the role of the African American church in this effort. This study examines parishioner perceptions and beliefs about the role of the church in ACP and end-of-life care (EOLC). METHOD: Qualitative interviews were completed with 25 church members (parishioners n = 15, church leader n = 10). The coding of data entailed a direct content analysis approach incorporating team experts for final themes. RESULTS: Seven themes emerged: (1) church role on end-of-life, (2) advocacy for health and well-being, (3) health literacy in EOLC, (4) lay health training on ACP and EOLC, (5) church recognized as a trusted source, (6) use of church ministries to sustain programs related to ACP and EOLC, and (7) community resources for EOLC needs. SIGNIFICANCE OF RESULTS: The church has a central role in the African American Community. These findings suggest that involving African American churches in ACP and EOLC training can have a positive effect on facilitating planning and care during illness, dying, and death for their congregants.

Unmet needs in community-living persons with dementia are common, often non-medical and related to patient and caregiver characteristics.

OBJECTIVE: Understanding which characteristics of persons with dementia (PWD) and their caregivers are associated with unmet needs can inform strategies to address those needs. Our purpose was to determine the percentage of PWD having unmet needs and significant correlates of unmet needs in PWD. DESIGN: Cross-sectional data were analyzed using bivariate and hierarchical multiple linear regression analyses. SETTING: Participants lived in the greater Baltimore, Maryland and Washington DC suburban area. PARTICIPANTS: A sample of 646 community-living PWD and their informal caregivers participated in an in-home assessment of dementia-related needs. MEASUREMENTS: Unmet needs were identified using the Johns Hopkins Dementia Care Needs Assessment. Correlates of unmet needs were determined using demographic, socioeconomic, clinical, functional and quality of life characteristics of the PWD and their caregivers. RESULTS: PWD had a mean of 10.6 (±4.8) unmet needs out of 43 items (24.8%). Unmet needs were most common in Home/Personal Safety (97.4%), General Health Care (83.1%), and Daily Activities (73.2%) domains. Higher unmet needs were significantly related to non-white race, lower education, higher cognitive function, more neuropsychiatric symptoms, lower quality of life in PWD, and having caregivers with lower education or who spent fewer hours/week with the PWD. CONCLUSIONS: Unmet needs are common in community-living PWD, and most are non-medical. Home-based dementia care can identify and address PWD's unmet needs by focusing on care recipients and caregivers to enable PWD to remain safely at home.

Advance care planning as perceived by marginalized populations: Willing to engage and facing obstacles.

BACKGROUND: Health disparities exist in end-of-life (EOL) care. Individuals and communities that are marginalized due to their race, ethnicity, income, geographic location, language, or cultural background experience systemic barriers to access and receive lower quality EOL care. Advance care planning (ACP) prepares patients and their caregivers for EOL decision-making for the purpose of promoting high-quality EOL care. Low engagement in ACP among marginalized populations is thought to have contributed to disparity in EOL care. To advance health equity and deliver care that aligns with the goals and values of each individual, there is a need to improve ACP for marginalized populations. AIM: To describe how patients from marginalized populations experience and perceive ACP. METHODS: We used an interpretive phenomenological approach with semi-structured qualitative interviews. Participants were recruited from four primary care clinics and one nursing home in a US Pacific Northwest city. Thirty patients from marginalized populations with serious illness participated in individual interviews between January and December 2021. Participants were asked to describe their experiences and perceptions about ACP during the interviews. RESULTS: The mean age of 30 participants was 69.5; 19 (63%) were women; 12 (40%) identified as Asian/Pacific Islanders, 10 (33%) as Black; and 9 (30%) were non-native English speakers. Our three key findings were: 1) patients from marginalized populations are willing to engage in ACP; 2) there were multiple obstacles to engaging in ACP; and 3) meaningful ACP conversations could happen when clinicians listen. Although participants from marginalized populations were willing to engage in ACP, a fragmented and restrictive healthcare system and clinicians' biased behaviors or lack of interest in knowing their patients were obstacles. Participants who felt their clinicians took time and listened were encouraged to engage in ACP. CONCLUSION: Patients from marginalized populations are willing to engage in ACP conversations despite a common belief otherwise. However, obstacles to meaningful ACP conversations with healthcare providers exist. Clinicians need to be aware of these obstacles and listen to build trust and engage marginalized patients in mutually meaningful ACP conversations.

Pilot Testing Educational Videos for Black Caregivers Receiving Home Hospice Care.

Black caregivers face distinct challenges in symptom management when providing end-of-life care. Educational interventions may improve caregiver preparedness and competency by providing information on symptom management. This study pilot tested 4 culturally tailored caregiver educational videos about symptom management for Black caregivers receiving home hospice care at a large, urban, nonprofit hospice organization to determine feasibility and acceptability, along with their potential impact on caregiver outcomes. All participants (N = 10) agreed to watch the 4 videos and found the videos to be helpful; 90% (n = 9) shared that they would recommend them to other Black caregivers receiving home hospice care. Total preparedness scores increased from a mean score of 23.5 preintervention to 28.3 postintervention. Caregiver competency scores increased from 13.8 at preintervention to 14.3 at postintervention. Caregivers' comfort and knowledge scores increased from preintervention to postintervention for all 7 end-of-life topics presented in the 4 videos. This study found that it was feasible and acceptable to show Black caregivers culturally tailored educational videos related to issues regarding symptom management. Many found the videos to be helpful and the topics to be relatable. There were trends toward improvement in preparedness and competency. Future studies examining efficacy are needed to determine the impact of this intervention.

Palliative Care Research and Clinical Practice Priorities in the United States as Identified by an Interdisciplinary Modified Delphi Approach.

Background: Palliative care demands in the United States are growing amid a comparatively small workforce of palliative care clinicians and researchers. Therefore, determining research and clinical practice priorities is essential for streamlining initiatives to advance palliative care science and practice. Objectives: To identify and rank palliative care research and clinical practice priority areas through expert consensus. Design: Using a modified Delphi method, U.S. palliative care experts identified and ranked priority areas in palliative care research and clinical practice. Priorities were thematically grouped and analyzed for topic content and frequency; univariate analysis used the median of each priority item ranking, with a cutoff median of ≤8 indicating >76% agreement for an item's ranking. Results: In total, 27 interdisciplinary pediatric and adult palliative care experts representing 19 different academic institutions and medical centers participated in the preliminary survey and the first Delphi round, and 22 participated in the second Delphi round. The preliminary survey generated 78 initial topics, which were developed into 22 priority areas during the consensus meeting. The top five priorities were (1) access to palliative care, (2) equity in palliative care, (3) adequate financing of palliative care, (4) provision of palliative care in primary care settings, and (5) palliative care workforce challenges. Conclusions: These expert-identified priority areas provide guidance for researchers and practitioners to develop innovative models, policies, and interventions, thereby enriching the quality of life for those requiring palliative care services.

Using meta-research to foster diverse, equitable, and inclusive collaborative research networks.

Fostering diverse, equitable, and inclusive collaborative research networks is important for advancing the field of aging research. Despite sizeable investment in research consortia and career development programs, there has been only moderate progress toward diversifying the research workforce studying aging. Without critically examining what works and what does not, continuing to place more resources into these same strategies may not result in a substantial improvement in diversity or the creation of collaborative networks. Using meta-research to rigorously evaluate potential strategies to promote diversity and collaboration may yield important insights that can be used to improve upon current efforts. For this reason, we sought to describe meta-research and highlight how its principles can be used to achieve the aging research community's collaboration and diversity goals.

Black Caregivers' Symptom Management, Cultural, and Religious Experiences With Home Hospice Care.

CONTEXT: Informal Black or African American (Black/AA) caregivers are at high risk for caregiver burden due to both greater caregiving responsibilities and unmet needs. However, there has been minimal research on the challenges Black/AA caregivers face after hospice enrollment. OBJECTIVES: This study seeks to address this knowledge gap by applying qualitative methods to understand Black/AA caregivers' experiences around symptom management, cultural, and religious challenges during home hospice care. METHODS: Data from small group discussions with 11 bereaved Black/AA caregivers of patients who received home hospice care were qualitatively analyzed. RESULTS: Caregivers struggled most with managing patients' pain, lack of appetite, and decline near end of life (EoL). Cultural needs (e.g., knowing their language, having familiarity with foods) were perceived as not on top of mind for many Black/AA caregivers. However, there was a concern of stigma around mental health preventing care recipients from sharing their mental health concerns and seeking resources. Many caregivers relied on their personal religious networks rather than services provided by hospice chaplains. Lastly, caregivers reported increased burden during this phase of caregiving but were satisfied with the overall hospice experience. CONCLUSION: Our results suggest that tailored approaches that target mental health stigma in the Black/AA community and reduce caregiver distress around end of life symptoms may improve hospice outcomes among Black/AA hospice caregivers. Hospice spiritual services should consider offering services complementary to caregivers' existing religious networks. Future qualitative and quantitative studies should examine the clinical implications of these results in terms of patient, caregiver, and hospice outcomes.

Advance Care Planning in Serious Illness: A Narrative Review.

CONTEXT: Advance care planning (ACP) intends to support person-centered medical decision-making by eliciting patient preferences. Research has not identified significant associations between ACP and goal-concordant end-of-life care, leading to justified scientific debate regarding ACP utility. OBJECTIVE: To delineate ACP's potential benefits and missed opportunities and identify an evidence-informed, clinically relevant path ahead for ACP in serious illness. METHODS: We conducted a narrative review merging the best available ACP empirical data, grey literature, and emergent scholarly discourse using a snowball search of PubMed, Medline, and Google Scholar (2000-2022). Findings were informed by our team's interprofessional clinical and research expertise in serious illness care. RESULTS: Early ACP practices were largely tied to mandated document completion, potentially failing to capture the holistic preferences of patients and surrogates. ACP models focused on serious illness communication rather than documentation show promising patient and clinician results. Ideally, ACP would lead to goal-concordant care even amid the unpredictability of serious illness trajectories. But ACP might also provide a false sense of security that patients' wishes will be honored and revisited at end-of-life. An iterative, 'building block' framework to integrate ACP throughout serious illness is provided alongside clinical practice, research, and policy recommendations. CONCLUSIONS: We advocate a balanced approach to ACP, recognizing empirical deficits while acknowledging potential benefits and ethical imperatives (e.g., fostering clinician-patient trust and shared decision-making). We support prioritizing patient/surrogate-centered outcomes with more robust measures to account for interpersonal clinician-patient variables that likely inform ACP efficacy and may better evaluate information gleaned during serious illness encounters.

Recruitment of a diverse research cohort in a large metropolitan area for dementia intervention studies.

The human and financial costs of dementia care are growing exponentially. Over five and a half million older Americans are estimated to be living with Alzheimer's disease and related dementia (ADRD). By 2050, this is expected to increase to over 13 million, and persons of color are at the highest risk. Considerable funds have been committed to research to prevent, treat, and care for persons at risk for ADRD. However, enrollment of research participants, particularly those coming from diverse backgrounds, is a perennial challenge and has serious implications. This paper quantitatively details the results of a community-based multi-modal outreach effort to recruit a racially diverse sample for non-pharmacological dementia intervention, including referral and participant sources and yield, total recruitment costs and cost per enrolled dyad, and a qualitative description of lessons learned, with particular attention to the recruitment of Black participants. The largest number of referrals and referrals converting to study participants, for both Black and White persons, were from a Maryland Department of Health mailing to Medicaid recipients. There was an important difference in the most effective strategies, proportionally, for white and Black participants. The MDH mailing had the highest yield for our Black referrals and participants, while professional referrals had the highest yield for white referrals and participants. The total estimated cost of recruitment was $101,058, or $156.19 per enrolled dyad. Ultimately 646 persons with dementia and care partner dyads were enrolled, 323 (50%) of whom were Black.

Defining Clinical Excellence for Palliative Care Specialists: A Concept Whose Time Has Come.

Experts in the field of palliative care in the United States (U.S.) have defined competence, or "good," mainly for programs, trainees, or providers of primary palliative care. Our interprofessional workgroup of palliative care specialists proposes that setting a standard for clinical excellence, or "great," applicable to palliative care specialists of all professions will elevate the field in the U.S. by providing an aspirational target usable for individual assessment and self-assessment, highlighting the common ground between team roles, and promoting a deeper understanding of teamwork, utilization, and productivity. We call for research that utilizes inclusive methods and broad representation of diverse voices to design a vivid, practical, and evidence-based definition of clinical excellence for palliative care specialists.

Transcending inequities in dementia care in Black communities: Lessons from the maximizing independence at home care coordination program.

PURPOSE: We examine care partners' experience of the Maximizing Independence at Home (MIND) intervention, a multicomponent, home-based dementia care coordination program designed to provide high quality, wholistic care coordination for people and families living with dementia. The goal of the study was to understand 1. the unique dementia-related needs of Black care partners and barriers and challenges to caregiving experienced within the Black community, 2. perceived benefits of the MIND program, and 3. ways to improve the program and make it more culturally responsive to the Black community. METHOD: We conducted three focus groups totaling 20 care partners of people living with dementia; who participated in the MIND intervention (2014-2019); all Black/African American and English speaking. Verbatim transcriptions were independently analyzed line-by-line by two coders using inductive approaches. FINDINGS: Participants noted three overarching themes related to dementia care needs and challenges in the Black community: difficulty finding and accessing dementia information and relevant services and supports; familial conflict/lack of sibling and familial support; and lack of effective communication about dementia within Black Communities. Regarding MIND at home program benefits, four themes emerged: 1. perceived to help locate resources (formal and informal); 2. provided care partners an opportunity for socialization and interaction; 3. included comprehensive assessments and helpful linked information; and 4. resulted in a "much needed break for care partners." Increased diversity of the MIND program personnel, greater clarity and consistency in MIND program promotion, and better communications were themes for how the program could be improved. CONCLUSION: Care partners participating in the MIND program perceived common benefits in aspects related to care for the persons living with dementia as well as benefits to themselves, believed the program addressed important challenges and gaps in education, services, and social support, and could be enhanced in its delivery and cultural responsiveness.

A Review of Race and Ethnicity in Hospice and Palliative Medicine Research: Representation Matters.

CONTEXT: Despite documented racial and ethnic disparities in care, there is significant variability in representation, reporting, and analysis of race and ethnic groups in the hospice and palliative medicine (HPM) literature. OBJECTIVES: To evaluate the race and ethnic diversity of study participants and the reporting of race and ethnicity data in HPM research. METHODS: Adult patient and/or caregiver-centered research conducted in the U.S. and published as JPSM Original Articles from January 1, 2015, through December 31, 2019, were identified. Descriptive analyses were used to summarize the frequency of variables related to reporting of race and ethnicity. RESULTS: Of 1253 studies screened, 218 were eligible and reviewed. There were 78 unique race and ethnic group labels. Over 85% of studies included ≥ one non-standard label based on Office of Management and Budget designations. One-quarter of studies lacked an explanation of how race and ethnicity data were collected, and 83% lacked a rationale. Over half did not include race and/or ethnicity in the analysis, and only 14 studies focused on race and/or ethnic health or health disparities. White, Black, Hispanic, Asian, American Indian or Alaska Native, and Native Hawaiian or Other Pacific Islander persons were included in 95%, 71%, 43% 37%,10%, and 4% of studies. In 92% of studies the proportion of White individuals exceeded 57.8%, which is their proportion in the U.S. CONCLUSION: Our findings suggest there are important opportunities to standardize reporting of race and ethnicity, strive for diversity, equity, and inclusion among research participants, and prioritize the study of racial and ethnic disparities in HPM research.

SHARING Choices: Design and rationale for a pragmatic trial of an advance care planning intervention for older adults with and without dementia in primary care.

BACKGROUND: Advance care planning (ACP) and involving family are particularly important in dementia, and primary care is a key setting. The purpose of this trial is to examine the impact and implementation of SHARING Choices, an intervention to improve communication for older adults with and without dementia through proactively supporting ACP and family engagement in primary care. METHODS: We cluster-randomized 55 diverse primary care practices across two health systems to the intervention or usual care. SHARING Choices is a multicomponent intervention that aims to improve communication through patient and family engagement in ACP, agenda setting, and shared access to the patient portal for all patients over 65 years of age. The primary outcomes include documentation of an advance directive or medical orders for life-sustaining treatment in the electronic health record (EHR) at 12 months for all patients and receipt of potentially burdensome care within 6 months of death for the subgroup of patients with serious illness. We plan a priori sub-analysis for patients with dementia. Data sources include the health system EHRs and the Maryland health information exchange. We use a mixed-methods approach to evaluate uptake, fidelity and adaptation of the intervention and implementation facilitators and barriers. CONCLUSIONS: This cluster-randomized pragmatic trial examines ACP with a focus on the key population of those with dementia, implementation in diverse settings and innovative approaches to trial design and outcome abstraction. Mixed-methods approaches enable understanding of intervention delivery and facilitators and barriers to implementation in rapidly changing health care systems. CLINICALTRIALS: gov Identifier: NCT04819191.