Leaning In to Serious Illness Care Through Stories and Science.

This volume was planned prior to the COVID-19 pandemic as the North Carolina Institute of Medicine (NCIOM) completed a yearlong task force on serious illness. Beyond the task force report, we wanted to dedicate a special edition of the NCMJ to serious illness issues. We commissioned authors who could discuss the challenges, the current practices, and the extensive personal and professional skills needed to navigate these complicated medical diagnoses that often end in death. Little did we know how timely this would be in light of the current pandemic, and we can only speculate on how the world will look as this is published. Our pre-COVID planning reflected personal experiences we all face with the common denominator of serious illness impacting and shaping our lives. As guest editors, we considered how this NCMJ edition would address personal concerns for you, our reader, as well as ourselves. A physician, a social worker, and a nurse, we each have our stories and we want to invite you to lean in and bring both your head and your heart to this reading. We start by relating two very personal experiences that shaped not only life following loss, but also career choices, clinical practices, and scholarship. As you focus on this journal's content, we hope you will also reflect on the people you care for, as well as the issues we all inevitably face.

Community engagement with African American clergy: faith-based model for culturally competent practice.

OBJECTIVE: The intent of this exploratory qualitative study was to examine African American Baptist clergy's pastoral care to older congregants with mental disorders. Critical Race Theory was the guiding framework in this study. METHOD: A purposive sample of 18 African American clergy participated in one-on-one interviews. RESULTS: Collectively, all participants were active in the provision of mental health to older congregants with mental disorders. The primary emergent theme 'shepherding the flock' the central phenomenon uncovered in the data, was used to organize a model of pastoral care, which is presented in this paper. Findings from this study supported results from previous studies on the integral role of the Church and clergy in the African American community. CONCLUSION: Moreover, this study highlights the importance of internal ministries in the Church and the need for further study and potential partnership opportunity.

Meaning of Hospice Care: Perceptions of Patients and Families.

Background: About half of hospice-eligible adults die without hospice each year. Misconceptions about hospice are frequently identified as barriers to utilization, but hospice perceptions are not well documented. Objectives and Setting/Subjects: To examine perceptions of hospice (initial and post-enrollment) among 90 U.S. patients/families actively enrolled in a large, metropolitan hospice in Texas, and to identify factors associated with participant perceptions. Design and Measurement: Concurrent mixed methods and cross-sectional design collecting data via research questionnaire with Likert scales and open-ended questions. Wilcoxon signed-rank test determined differences between recall of initial hospice perceptions at time of referral and perceptions while actively receiving services; Fisher's exact and Kruskal-Wallis tests were used to examine bivariate relationships between perceptions of hospice and satisfaction with physician communication and demographic variables. Qualitative statements were analyzed using an inductive, content analysis approach. Results: There was a significant difference between participants' perceptions of hospice recalled from initial conversations compared with current perceptions following hospice enrollment (z = -6.44, P < .01). Initial perceptions of hospice were significantly related to satisfaction with physician communication (P = .011) and diagnosis (P = .019). Qualitative themes range from negative (ie hospice = death) to positive (ie comfort, support, loving staff) with 65.6% of participants demonstrating positive increases in understanding. Conclusion: Participants' perceptions of hospice were positively associated with satisfaction with physician communication prior to hospice enrollment, and potentially impacted by the experience of care itself. During hospice discussions, clinicians should elicit patient and family perceptions in addition to providing descriptions of eligibility and services.

Development of Objectives to Inform a National Standardized Primary Palliative Care Curriculum for Health Professions Students.

Introduction: Despite recent educational advances, the need for a national standardized primary palliative care curriculum for health professions students remains evident. Methods: An interprofessional leadership team developed a set of core learning objectives built on previously published competencies. A survey was then sent to palliative care experts for feedback and consensus. Results: Twenty-eight of 31 objectives met a 75% consensus threshold, 2 were combined with others, and 12 were refined based on survey feedback. Discussion: With interprofessional input at all stages, we finalized a comprehensive list of 26 learning objectives for a primary palliative care curriculum targeting health professions students. These objectives will be widely available through an online course but can also be adopted for use by individual educators across health professions institutions. These objectives and related curriculum are critical to producing practice-ready clinicians who are prepared to care for the burgeoning population of seriously ill patients.

Exploring professional boundaries in end-of-life care: considerations for hospice social workers and other members of the team.

Hospice social workers and members of the interdisciplinary team develop close therapeutic relationships with patients and families as they journey toward death. During this process, situations can develop that challenge professional boundaries and blur the line between a professional and personal relationship. This article will examine professional boundaries within the context of hospice care through case studies identifying challenges that hospice social workers and members of the interdisciplinary team may encounter with recommendations for how to manage boundary concerns.

Race Roundtable Series: Structural Racism in Palliative Care.

This series will focus on addressing the intersection of race and racism in palliative care through a series of roundtable discussions with interdisciplinary clinicians, researchers, educators, and leaders in palliative care. These short discussions are intended to stimulate readers to examine issues of race and racism within the field of hospice and palliative care - in the various forms that it appears - as well as serve as a continual call to action to facilitate and promote equity.

A National Survey of Social Workers Focusing on Attitudes, Knowledge, and Practice Behaviors for Educating Patients About Advance Directives: Implication During COVID19.

Social workers have a critical role on medical teams for facilitating effective conversations about advance care planning (ACP) in palliative and end-of-life care. Engaging patients in such conversations may be influenced by clinicians' attitudes. During the COVID19 pandemic, the need to examine barriers to serious illness care across healthcare settings and areas of specialty practice became abundantly clear. This study examines: (1) social workers' attitudes about ACP and (2) factors that influence the completion of advance directives (ADs). Using a cross-sectional study design, we surveyed 142 social workers on their knowledge, attitudes, and behaviors related to ADs. Using exploratory factor analyses, we identified 2 provider practice attitudes factors, 3 perceived barriers factors, and 2 perceived importance of AD factors. We then used logistic regression to estimate odds ratios (ORs) and 95% confidence intervals (CIs) for each of the factors in association with the frequency social workers reported educating patients about ADs. While various positive and negative attitudes and barriers toward educating patients are important factors to consider, social workers' perceptions of the importance of engaging patients in ACP education was the most important factor that influenced their behaviors. The odds of always/often (vs. sometimes/rarely/never) educating patients about ADs in their practice were greater for those social workers who reported they see the importance of AD decision-making (OR = 3.21, 95%CI = 1.83-5.62) and confirming goals-of-care (OR = 1.76, 95%CI = 1.03-3.01). Social worker's ACP knowledge and skills for educating patients are important in initiating conversations prior to a health crisis, especially important for developing a comprehensive care plan.

Anxiety, Depression, Quality of Life, Caregiver Burden, and Perceptions of Caregiver-Centered Communication among Black and White Hospice Family Caregivers.

Background: Anxiety, depression, and reduced quality of life (QOL) are common problems for hospice family caregivers, but it is unknown if disparities in these experiences exist among Black and White caregivers. Objectives: To compare anxiety, depression, QOL, caregiver burden, and perceptions of caregiver-centered hospice team communication between Black and White hospice family caregivers. Design: Secondary analysis of baseline data from two randomized clinical trials. Setting/Subjects: Seven hundred twenty-two Black and White hospice family caregivers ages 18+ from Midwestern and Northeastern United States. Measurements: Measures included the Generalized Anxiety Disorder-7 (GAD-7), Patient Health Questionnaire (PHQ-9), Caregiver Quality-of-Life Index-Revised (CQLI-R), Zarit Burden Interview (ZBI-7), and Caregiver-Centered Communication Questionnaire (CCCQ). Results: Black and White caregivers differed across demographic and socioeconomic variables. Nearly one-third of hospice family caregivers reported moderate-to-severe anxiety (32.1%) and moderate-to-severe depressive symptoms (32.0%). White caregivers reported lower QOL than Black caregivers (p = 0.04), specifically in emotional (p = 0.02) and social (p = 0.0005) domains. In multiple regression analyses controlling for caregiver and patient factors, we found no racial differences in depression, anxiety, QOL, caregiver burden, or perceptions of caregiver-centered hospice communication. Conclusions: Despite demographic and socioeconomic differences, Black and White hospice family caregivers experience similarly high levels of anxiety, depression, burden, and perceptions of hospice communication. Interventions to support hospice family caregivers across racial groups and research that identifies factors that mediate social determinants of health in this population are needed. The development and validation of culture-concordant mental health screening tools in racially diverse populations is recommended. Trial registration: ClinicalTrials.gov NCT02929108 and ClinicalTrials.gov NCT01444027.

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.

A phase II trial of bevacizumab plus everolimus for patients with refractory metastatic colorectal cancer.

PURPOSE: For patients with metastatic colorectal cancer (mCRC), no standard therapy exists after progression on 5-fluorouracil, oxaliplatin, irinotecan, bevacizumab, and cetuximab or panitumumab. Preclinical data demonstrated that combined vascular endothelial growth factor and mammalian target of rapamycin inhibition has greater antiangiogenic and antitumor activity than either monotherapy. A phase I study of bevacizumab plus everolimus demonstrated that the combination is safe; activity was seen in several patients with refractory mCRC. METHODS: Fifty patients with refractory mCRC were enrolled and received bevacizumab at 10 mg/kg every 2 weeks and everolimus at 10 mg orally daily. RESULTS: Of the 50 patients enrolled, the median age was 56 years and the median number of prior regimens was four. Forty-seven patients (96%) had prior bevacizumab exposure and 42 patients (84%) had documented progression on prior bevacizumab-based therapy. Forty-nine patients were evaluable for response; eight patients had minor responses (16%) and an additional 15 patients (30%) had stable disease (SD). No complete or partial responses were seen. The median progression-free survival interval was 2.3 months; however, 26% of patients achieved prolonged SD for ≥6 months, and three patients (6%) were on study for >1 year. The median overall survival duration was 8.1 months. The most common grade 1-2 toxicities were mucositis (68%) and hyperlipidemia (64%). Clinically significant grade ≥3 toxicities included hypertension (14%), fistula/abscess/perforation (8%), mucositis (6%), and hemorrhage (2%). CONCLUSIONS: Bevacizumab plus everolimus is generally tolerable but may have risks related to mucosal damage and/or wound healing. Bevacizumab plus everolimus appears to have modest activity in refractory mCRC in patients.

The influence of culture on end-of-life decision making.

In their research, scholars have documented racial and ethnic differences in end-of-life care preferences, which have translated into cultural barriers. However, few studies have explained the racial differences. In the present study, focus groups with semi-structured follow-up interviews were utilized to elicit explanations for variance in decision making in a sample of Black and White community-dwelling residents. Participants identified specific cultural beliefs, values, and communication patterns that can be used to promote cultural competency among practitioners who provide care at end of life.

Examining the Family Support Role of Older Hispanics, African Americans, and Non-Hispanic Whites and Their Breast Cancer Screening Behaviors.

Disparities in breast cancer mortality rates among older Black and Hispanic women are due in part to low participation in cancer screening. Participation in cancer screening could be affected by an array of factors, including social support. Understanding the complex interplay between social support and breast cancer screening among older female adults, specifically among groups with higher mortality rates, is extremely important for timely and appropriate interventions to increase survival rates. Thus, utilizing the social network theory as the conceptual framework, this study aims to examine effects of social support on receiving a mammogram among a representative sample of older adults, specifically African American and Hispanic populations in the United States. Logistic regression models were conducted using the 2008 and 2012 Health and Retirement Study data. Findings from this study indicate that specific aspects of social support influence breast cancer screening participation among older Hispanic and non-Hispanic White women. However, this was not the case for the older Black women after adjusting for the sociodemographic factors. Given the role that family members play in the care of older adults, it is critical that social workers consider both the possible positive and negative interactions older women may have and how these interactions may affect their cancer screening behaviors. Findings can provide formative data to develop public health and social work interventions to increase positive social support and reduce negative social support by spouses and children to enhance breast cancer screening among older adults.

Making Good in Unpromising Places: The Development and Cultivation of Redemption Scripts Among Long-Term Prisoners.

Generally regarded as an institution which frustrates rather than enables the process of desisting from crime, the potential for prisoners to find redemption in prison seems bleak. Despite unpromising conditions within the prison, we find strong evidence of reform and a desire to make amends among a cohort of long-term prisoners. While these prisoners were all participating in a rehabilitation program, their narratives of reform were highly individualized and situated in the context of their various experiences of long sentences. However, we report that these individualized accounts of reform were strengthened and facilitated in similar ways through interactions established via their program participation. Specifically, the program was experienced as fulfilling, empowering, and therapeutic. This functioned to reinforce participants' sense of control, or self-mastery, increased their self-esteem, and instilled hope and confidence that an alternative moral future may be achievable. Implications for supporting desistance in the prison are discussed.

Promoting advance directives among African Americans: a faith-based model.

BACKGROUND: Studies show that African Americans are less likely than other ethnic groups to complete advance directives. However, what influences African Americans' decisions to complete or not complete advance directives is unclear. METHODS: Using a faith-based promotion model, 102 African Americans aged 55 years or older were recruited from local churches and community-based agencies to participate in a pilot study to promote advance care planning. Focus groups were used to collect data on participants' preferences for care, desire to make personal choices, values and attitudes, beliefs about death and dying, and advance directives. A standardized interview was used in the focus groups, and the data were organized and analyzed using NUDIST 4 software (QRS Software, Victoria, Australia). RESULTS: Three fourths of the participants refused to complete advance directives. The following factors influenced the participants' decisions about end-of-life care and completion of an advance directive: spirituality; view of suffering, death, and dying; social support networks; barriers to utilization; and mistrust of the health care system. CONCLUSION: The dissemination of information apprises individuals of their right to self-determine about their care, but educational efforts may not produce a significant change in behavior toward completion of advance care planning. Thus, ongoing efforts are needed to improve the trust that African Americans have in medical and health care providers.

Surgical management of primary breast sarcoma.

Primary sarcoma constitutes less than one per cent of breast malignancies. A retrospective review of this disease at our institution was undertaken to assess the effect of different treatment modalities on outcome. Over a 24-year period 28 patients were identified. Follow-up ranged from one to 228 months. Partial mastectomy was done in seven patients, whereas ten underwent total mastectomy and nine had modified radical mastectomy. Two refused surgery. All margins of resection were negative. In total ten axillary lymph node dissections were done with no positive nodes identified. Pathologic analysis of tumors revealed a variety of sarcomas including high-grade malignant cystosarcoma phyllodes in 13. Recurrence of disease occurred in two women, both with malignant cystosarcoma phyllodes. One was a local recurrence in a patient who had undergone partial mastectomy. This was successfully treated with a total mastectomy. The second recurrence involved a distant metastasis in a patient treated with modified radical mastectomy that eventually led to her death. For the entire group the disease-free survival was 75 per cent at 10 years whereas overall survival was 87.5 per cent. In conclusion an adequate margin of resection is the single most important determinant of long-term survival. Axillary lymph node dissection is not necessary for the treatment of these tumors.