Identifying research priorities and essential elements of palliative care services for people facing malignant brain tumors: A participatory co-design approach.

Background: Primary malignant brain tumors (ie, brain cancer) impact the quality of life (QoL) for patients and care partners in disease-specific ways involving cognition and communication. Palliative care (PC) addresses patient/care partner QoL, but it is not known how PC may address the unique needs of brain cancer patients. The purpose of this project was to identify brain cancer PC research priorities using participatory co-design methods. Methods: Participatory co-design included the formation of a longitudinal, collaborative advisory group, engagement frameworks, design-thinking processes, and social media-based engagement over a 1-year period. Community-identified brain cancer QoL needs and research priorities were mapped to proposed "essential elements" of brain cancer PC services. Results: We engaged an estimated 500 patients, care partners, healthcare professionals, and others with an interest in QoL and PC services for people with malignant brain tumors. Research priorities included testing the early introduction of PC services designed to address the unique QoL needs of brain cancer patients and care partners. Essential elements of brain cancer PC include: (1) addressing brain cancer patients' unique range of QoL needs and concerns, which change over time, (2) tailoring existing services and approaches to patient needs and concerns, (3) enhancing the involvement of interprofessional care team members, and (4) optimizing timing for PC services. This was the first participatory research effort exploring brain cancer patient and care partner QoL needs and PC services. Conclusions: The brain tumor community calls for research testing PC service models for patients that incorporate the "essential elements" of palliative care.

Delineation of core roles of oncology social workers in inpatient settings: a secondary data analysis.

There is limited literature on the roles and tasks conducted by oncology social workers (OSW) who work with cancer patients in inpatient units. The purpose of this study was to delineate the roles reported to be significant to practice among OSWs who practice in inpatient settings and to identify the domains into which these roles fall. The data used in this secondary data analysis were collected in a large national study of OSWs to delineate the roles and tasks across all cancer settings. The sample extracted for this study were 240 OSWs who endorsed providing direct care to cancer patients in inpatient settings. Exploratory factor analysis revealed eight factors made up of 34 tasks. The roles were aligned with three of the four service areas in the Association of Oncology Social Scope of Practice and seven of the nine competencies set forth by the Council of Social Work Education. The findings can be used to enhance communications about the roles of inpatient OSWs across OSW constituencies, increase awareness of the role supervision and consultation to ensure equitable and just practice, enhance social work coursework to prepare students to work in healthcare inpatient settings, and in future research.

Oncology social workers' involvement in palliative care: Secondary data analysis from nationwide oncology social workers survey.

OBJECTIVES: Social workers are vital in delivering psychosocial services in palliative care, yet their specific roles in palliative oncology remain undefined. This study aimed to delineate the current practice role of oncology social workers involvement in palliative care in the United States. METHODS: This study utilized a cross-sectional design and involved secondary analysis of data from a nationwide survey focused on workforce conditions for oncology social workers. The participants were social workers who were directly involved in providing care to cancer patients and delivering palliative care services. They completed an online survey in which they indicated the relevance of 91 tasks related to their practice. The survey also collected individual demographic and work-related characteristics. Exploratory factor analysis was used to achieve the study objective. RESULTS: Responses from a secondary data set of 243 oncology social workers involved in palliative care results in a 6-factor solution comprising 34 tasks. These factors were identified as: Therapeutic Interventions for Individuals, Couples, and Families; Facilitate Patient Care Decision-making; Care Coordination; Assessment and Emotional Support; Organization and Community Service; and Equity and Justice. All 6 factors demonstrated good internal reliability, as indicated by Cronbach's alpha scores above 0.70. SIGNIFICANCE OF RESULTS: The findings can be used to develop job descriptions and education for social workers employed in palliative cancer care. The clear role descriptions also make social work visible to other professionals in palliative oncology. By clarifying the roles of oncology social workers, this study contributes to the improvement of palliative care delivery and enhances interprofessional collaboration within cancer care teams.

Educating Social Workers in Palliative and End-of-Life Care: Development and Implementation of a New National Training Program.

Background: Educating Social Workers in Palliative and End-of-Life Care (ESPEC) is a nationally scalable continuing education program designed to improve the knowledge and skills of frontline health social workers caring for patients with serious illness. Objectives: This article describes ESPEC's rationale, development, and initial implementation. Design: Following the creation of consensus-derived core primary palliative care competencies for health primary care social workers based on the eight domains of palliative care outlined in the National Consensus Project Guidelines for Quality Palliative Care, an evidence-based curriculum was developed. This was used to develop a hybrid training model with a self-study component, synchronous instructor-led skills-based training, leadership training, and mentorship. The interactive curriculum incorporates patient scenarios highlighting the health social work role. Training targets high-impact skills-the biopsychosocial-spiritual assessment, advance care planning, family meetings, and interprofessional communication-and professional development. Settings/Subjects: ESPEC was launched in the United States in collaboration with the National Association of Social Workers (NASW) and the Social Work Hospice and Palliative Care Network (SWHPN). Results: The preliminary launch demonstrated high user acceptability, positive ratings for content and format, and gains in knowledge and competence. Conclusions: Data suggest that ESPEC can increase health social workers' knowledge and confidence as providers of palliative care interventions. National dissemination is ongoing.

Advance Care Planning Conversations: Laying the Foundation for Goal-Concordant Care at End of Life.

The delivery of culturally congruent, person-centered, family-focused quality care requires an exploration of the values, beliefs, and preferences of those we serve [13]. Nuanced advance care planning conversations lay the foundation for shared decision making and promotes the delivery of goal-concordant care. This chapter will provide clinicians with guidance and resources to aid this process with a focus on contextualized communication with those with serious illness.

Salary and student loan debt for oncology social workers: Findings from the oncology social work competencies, opportunities, roles and expertise (CORE) survey.

PURPOSE: To better understand the current salaries and student loan debt levels among oncology social workers (OSWs). DESIGN: Cross-sectional study using online survey. SAMPLE: OSWs across a variety of cancer care settings in the U.S. (n = 1055). METHODS: Salary and debt were collected via single ordinal variables. Crosstabs and chi-square tests were used to examine whether salary and debt differ by demographic and work-related characteristics. FINDINGS: Median OSW salaries ranged from $60,001 to $70,000. Three-fourths of OSWs reported having student loan debt. Younger and recently graduated OSWs and OSWs of color were more likely to have greater student loan debt than their counterparts. CONCLUSIONS: Relative low salary and debt burden have important implications for securing a current and future OSW workforce. IMPLICATIONS FOR PSYCHOSOCIAL POLICY: Adequate reimbursement and loan repayment opportunities for frontline OSWs will better secure this workforce. Advocacy efforts to identify OSWs qualified for loan forgiveness programs are warranted.

Assessment of Clinical Palliative Care Trigger Status vs Actual Needs Among Critically Ill Patients and Their Family Members.

Importance: Palliative care consultations in intensive care units (ICUs) are increasingly prompted by clinical characteristics associated with mortality or resource utilization. However, it is not known whether these triggers reflect actual palliative care needs. Objective: To compare unmet needs by clinical palliative care trigger status (present vs absent). Design, Setting, and Participants: This prospective cohort study was conducted in 6 adult medical and surgical ICUs in academic and community hospitals in North Carolina between January 2019 and September 2020. Participants were consecutive patients receiving mechanical ventilation and their family members. Exposure: Presence of any of 9 common clinical palliative care triggers. Main Outcomes and Measures: The primary outcome was the Needs at the End-of-Life Screening Tool (NEST) score (range, 0-130, with higher scores reflecting greater need), which was completed after 3 days of ICU care. Trigger status performance in identifying serious need (NEST score ≥30) was assessed using sensitivity, specificity, positive and negative likelihood ratios, and C statistics. Results: Surveys were completed by 257 of 360 family members of patients (71.4% of the potentially eligible patient-family member dyads approached) with a median age of 54.0 years (IQR, 44-62 years); 197 family members (76.7%) were female, and 83 (32.3%) were Black. The median age of patients was 58.0 years (IQR, 46-68 years); 126 patients (49.0%) were female, and 88 (33.5%) were Black. There was no difference in median NEST score between participants with a trigger present (45%) and those with a trigger absent (55%) (21.0; IQR, 12.0-37.0 vs 22.5; IQR, 12.0-39.0; P = .52). Trigger presence was associated with poor sensitivity (45%; 95% CI, 34%-55%), specificity (55%; 95% CI, 48%-63%), positive likelihood ratio (1.0; 95% CI, 0.7-1.3), negative likelihood ratio (1.0; 95% CI, 0.8-1.2), and C statistic (0.50; 95% CI, 0.44-0.57). Conclusions and Relevance: In this cohort study, clinical palliative care trigger status was not associated with palliative care needs and no better than chance at identifying the most serious needs, which raises questions about an increasingly common clinical practice. Focusing care delivery on directly measured needs may represent a more person-centered alternative.

Moral Distress Among Oncology Social Workers.

PURPOSE: Literature on moral distress among oncology social workers (OSWs) is sparse. The aim of the current study was to examine the prevalence of moral distress and its domains of influence, and to identify demographic and work-related characteristics associated with moral distress among OSWs. METHODS: Data came from the Oncology Social Work Competencies, Opportunities, Roles, and Expertise survey, conducted from August to September 2020 (during the COVID-19 global pandemic). Data collected included demographic information (eg, age, sex, and race) and work-related characteristics (eg, job position, organization type, work setting, employment status, salary, years in the profession, and OSW-C certification). Moral distress was measured using the Measure of Moral Distress for Healthcare Professionals. Tests of association, including multivariate linear regression, were conducted to achieve the research aims. RESULTS: Total moral distress scores on the Measure of Moral Distress for Healthcare Professionals (range 0-432) for 745 OSWs ranged from 1 to 273, with an average score of 74.0. The three highest indicators of moral distress were observed in the patient or family experience domain. Higher levels of moral distress were associated with younger age, being a direct service provider, provision of inpatient cancer care, and more years in the profession. CONCLUSION: OSWs are experiencing moral distress. Institutional investments in professional education and support of OSWs are needed to mitigate and possibly prevent moral distress experienced by cancer care providers and thus ensure the delivery of quality psychosocial care for patients with cancer and their families.

Six months in: COVID-19 and its impact on oncology social work practice.

The extent to which oncology social workers (OSWs) are available and adapting to disruptions in service delivery throughout the COVID-19 pandemic is unknown.Objectives: The purpose of this report is to outline the initial impact of COVID-19 on oncology social work practice during the first six months of the pandemic.Methods: As part of a nationwide investigation of workforce conditions for OSWs, three professional organizations surveyed their members to assess the effects of COVID-19 on changes to work hours, employment status, work setting, pay, and mode for patient contact (e.g., telephone or videoconference).Findings: Among 939 OSWs, 20% reported a reduction in work hours, and two-thirds indicated a temporary shift in work to home, with most patient contact occurring primarily via telephone or videoconference.Implications: Results speak to the essential nature of oncology social work and the need for evidence to inform OSW training and advocacy efforts for however long the pandemic continues.

Stakeholder engagement in research on quality of life and palliative care for brain tumors: a qualitative analysis of #BTSM and #HPM tweet chats.

BACKGROUND: Research is needed to inform palliative care models that address the full spectrum of quality of life (QoL) needs for brain tumor patients and care partners. Stakeholder engagement in research can inform research priorities; engagement via social media can complement stakeholder panels. The purpose of this paper is to describe the use of Twitter to complement in-person stakeholder engagement, and report emergent themes from qualitative analysis of tweet chats on QoL needs and palliative care opportunities for brain tumor patients. METHODS: The Brain Cancer Quality of Life Collaborative engaged brain tumor (#BTSM) and palliative medicine (#HPM) stakeholder communities via Twitter using tweet chats. The #BTSM chat focused on defining and communicating about QoL among brain tumor patients. The #HPM chat discussed communication about palliative care for those facing neurological conditions. Qualitative content analysis was used to identify tweet chat themes. RESULTS: Analysis showed QoL for brain tumor patients and care partners includes psychosocial, physical, and cognitive concerns. Distressing concerns included behavioral changes, grief over loss of identity, changes in relationships, depression, and anxiety. Patients appreciated when providers discussed QoL early in treatment, and emphasized the need for care partner support. Communication about QoL and palliative care rely on relationships to meet evolving patient needs. CONCLUSIONS: In addition to providing neurological and symptom management, specialized palliative care for brain tumor patients may address unmet patient and care partner psychosocial and informational needs. Stakeholder engagement using Twitter proved useful for informing research priorities and understanding stakeholder perspectives on QoL and palliative care.

Top Ten Tips Palliative Care Clinicians Should Know About Psychosocial and Family Support.

Palliative care (PC) is perhaps the most inherently interdisciplinary specialty within health care. Comprehensive PC is delivered by a core team of physicians, nurses, social workers, spiritual care providers, pharmacists, and others who address the broad range of medical, psychosocial, and spiritual needs of those living with serious illness. While PC clinicians are typically skilled in screening for distress, the best path to follow when patients screen positive for psychosocial distress or exhibit mental health challenges may not always be clear. This article brings together the perspectives of experienced social workers practicing across PC and hospice settings. It seeks to identify opportunities and rationale for the integration of palliative social work (PSW) in the provision of quality, person-centered, family-focused, and culturally congruent care for the seriously ill. Increasing recognition of the impact of social determinants of health highlights the critical importance of including PSW if we are to better understand and ultimately address the broad range of factors that influence people's quality of life.

Defining Core Competencies for Generalist-Level Palliative Social Work.

CONTEXT: Care provided to seriously ill patients by frontline social workers is a component of generalist-level palliative care. The core competencies for high-quality generalist-level palliative social work are necessary to promote training curricula and best practices but have not yet been defined in the U.S. OBJECTIVE: The objective of this study was to develop consensus-derived core competencies for generalist-level palliative social work. METHODS: Fifty-five proposed social work competencies were categorized by the eight domains of palliative care identified by the National Consensus Project for Quality Palliative Care. The competencies were rated by 41 regionally dispersed, Master's level social workers selected through purposive and snowball sampling using a Delphi method. Each was rated as essential for generalist-level palliative social work, acceptable with modifications, or rejected based on the judgment that it was not essential for generalist-level palliative social work or was outside the scope of practice. Consensus was defined as >70% agreement to accept or reject a competency. Three review rounds were needed to achieve consensus on all competencies. RESULTS: Two competencies were added to the original list. Of the 57 proposed competencies, 41 were accepted (19 after modification) and 16 were rejected. Competencies in the social, spiritual, cultural, and ethical/legal aspects of care domains were relatively more likely to be accepted compared with those in structure and processes of care, physical care, psychological care, and care of patient at the end of life. CONCLUSION: The 41 consensus-derived competencies for generalist-level palliative social work may inform the development of training curricula and standards for high-quality care.

Management of Chronic Pain in Survivors of Adult Cancers: American Society of Clinical Oncology Clinical Practice Guideline.

PURPOSE: To provide evidence-based guidance on the optimum management of chronic pain in adult cancer survivors. METHODS: An ASCO-convened expert panel conducted a systematic literature search of studies investigating chronic pain management in cancer survivors. Outcomes of interest included symptom relief, pain intensity, quality of life, functional outcomes, adverse events, misuse or diversion, and risk assessment or mitigation. RESULTS: A total of 63 studies met eligibility criteria and compose the evidentiary basis for the recommendations. Studies tended to be heterogeneous in terms of quality, size, and populations. Primary outcomes also varied across the studies, and in most cases, were not directly comparable because of different outcomes, measurements, and instruments used at different time points. Because of a paucity of high-quality evidence, many recommendations are based on expert consensus. RECOMMENDATIONS: Clinicians should screen for pain at each encounter. Recurrent disease, second malignancy, or late-onset treatment effects in any patient who reports new-onset pain should be evaluated, treated, and monitored. Clinicians should determine the need for other health professionals to provide comprehensive pain management care in patients with complex needs. Systemic nonopioid analgesics and adjuvant analgesics may be prescribed to relieve chronic pain and/or to improve function. Clinicians may prescribe a trial of opioids in carefully selected patients with cancer who do not respond to more conservative management and who continue to experience distress or functional impairment. Risks of adverse effects of opioids should be assessed. Clinicians should clearly understand terminology such as tolerance, dependence, abuse, and addiction as it relates to the use of opioids and should incorporate universal precautions to minimize abuse, addiction, and adverse consequences. Additional information is available at www.asco.org/chronic-pain-guideline and www.asco.org/guidelineswiki.

The Serendipitous Survey: A Look at Primary and Specialist Palliative Social Work Practice, Preparation, and Competence.

BACKGROUND: Health professionals have begun to identify competencies needed for primary and specialist levels of palliative care practice, but little attention has been given to how these skills are acquired. OBJECTIVES: The authors electronically surveyed a wide range of health social workers and educators to investigate their reported levels of preparation, training, and self-assessed competence to provide palliative and end-of-life care. METHODS: Two health social work surveys were developed: one for educators and one for practitioners and students. The study used an electronic snowball sampling method with eight national social work listservs to capture a wide range of settings where health social workers may teach or practice. The survey was completed by 1149 self-identified health care social workers, 35% of whom identified as a specialist in palliative care. RESULTS: Health social work clinicians report competence in many skills related to palliative care and the psychosocial determinants of health, having developed these skills primarily through interprofessional and peer collaboration. CONCLUSIONS: A representative sample of social workers practicing in health care identify high competence in essential aspects of palliative care. This speaks to an existing pool of clinicians who, if practicing to the top of their licenses, have the potential to provide primary palliative care and contribute to the person-family centered care called for in the Institute of Medicine (IOM) report. Few programs exist to prepare social workers to work as specialists in palliative or end-of-life settings, and respondents identified key areas of practice that need to be integrated into graduate education to ensure that students, practitioners, and educators are better prepared to maximize the impact of health social work. Further research is needed to better understand how to prepare and train specialist-level palliative care social workers.

ExCEL in Social Work: Excellence in Cancer Education & Leadership: An Oncology Social Work Response to the 2008 Institute of Medicine Report.

ExCEL in Social Work: Excellence in Cancer Education & Leadership was a multi-year National Cancer Institute (NCI)-funded grant for the development and implementation of an innovative educational program for oncology social workers. The program's curriculum focused upon six core competencies of psychosocial-spiritual support necessary to meet the standard of care recommended by the 2008 Institute of Medicine (IOM) Report: Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs. The curriculum was delivered through a collaborative partnership between the City of Hope National Medical Center and the two leading professional organizations devoted exclusively to representing oncology social workers--the Association of Oncology Social Work and the Association of Pediatric Oncology Social Workers. Initial findings support the feasibility and acceptability of this tailored leadership skills-building program for participating oncology social workers.

Enhancing collaborative leadership in palliative social work in oncology.

The Institute of Medicine (IOM) Report-Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs-provided recommendations for meeting the palliative care needs of our growing population of older Americans. The IOM report highlights the demand for social work leadership across all aspects of the health care delivery system. Social workers are core interdisciplinary members of the health care team and it is important for them to be well prepared for collaborative leadership roles across health care settings. The ExCEL in Social Work: Excellence in Cancer Education & Leadership education project was created as a direct response to the 2008 IOM Report. This article highlights a sampling of palliative care projects initiated by outstanding oncology social work participants in the ExCEL program. These projects demonstrate the leadership of social workers in palliative care oncology.

Integrating social work into palliative care for lung cancer patients and families: a multidimensional approach.

Lung cancer patients and their family caregivers face a wide range of potentially distressing symptoms across the four domains of quality of life. A multidimensional approach to addressing these complex concerns with early integration of palliative care has proven beneficial. This article highlights opportunities to integrate social work using a comprehensive quality of life model and a composite patient scenario from a large lung cancer educational intervention National Cancer Institute-funded program project grant.

Strategies to support spirituality in health care communication: a home hospice cancer caregiver case study.

BACKGROUND: Although there is growing recognition of the importance of integrating spirituality within health care, there is little evidence to guide clinicians in how to best communicate with patients and family about their spiritual or existential concerns. METHODS: Using an audio-recorded home hospice nurse visit immediately following the death of a patient as a case-study, we identify spiritually-sensitive communication strategies. RESULTS: The nurse incorporates spirituality in her support of the family by 1) creating space to allow for the expression of emotions and spiritual beliefs and 2) encouraging meaning-based coping, including emphasizing the caregivers' strengths and reframing negative experiences. DISCUSSION: Hospice provides an excellent venue for modeling successful examples of spiritual communication. Health care professionals can learn these techniques to support patients and families in their own holistic practice. IMPLICATIONS FOR PRACTICE: All health care professionals benefit from proficiency in spiritual communication skills. Attention to spiritual concerns ultimately improves care.

Methadone safety: a clinical practice guideline from the American Pain Society and College on Problems of Drug Dependence, in collaboration with the Heart Rhythm Society.

UNLABELLED: Methadone is used for the treatment of opioid addiction and for treatment of chronic pain. The safety of methadone has been called into question by data indicating a large increase in the number of methadone-associated overdose deaths in recent years that has occurred in parallel with a dramatic rise in the use of methadone for chronic pain. The American Pain Society and the College on Problems of Drug Dependence, in collaboration with the Heart Rhythm Society, commissioned an interdisciplinary expert panel to develop a clinical practice guideline on safer prescribing of methadone for treatment of opioid addiction and chronic pain. As part of the guideline development process, the American Pain Society commissioned a systematic review of various aspects related to safety of methadone. After a review of the available evidence, the expert panel concluded that measures can be taken to promote safer use of methadone. Specific recommendations include the need to educate and counsel patients on methadone safety, use of electrocardiography to identify persons at greater risk for methadone-associated arrhythmia, use of alternative opioids in patients at high risk of complications related to corrected electrocardiographic QTc interval prolongation, careful dose initiation and titration of methadone, and diligent monitoring and follow-up. Although these guidelines are based on a systematic review, the panel identified numerous research gaps, most recommendations were based on low-quality evidence, and no recommendations were based on high-quality evidence. PERSPECTIVE: This guideline, based on a systematic review of the evidence on methadone safety, provides recommendations developed by a multidisciplinary expert panel. Safe use of methadone requires clinical skills and knowledge in use of methadone to mitigate potential risks, including serious risks related to risk of overdose and cardiac arrhythmias.