Patient Navigator Intervention to Improve Palliative Care Outcomes for Hispanic Patients With Serious Noncancer Illness: A Randomized Clinical Trial.

Importance: Disparities persist across the trajectory of serious illness, including at the end of life. Patient navigation has been shown to reduce disparities and improve outcomes for underserved populations. Objective: To determine the effectiveness of a lay patient navigator intervention, Apoyo con Cariño, in improving palliative care outcomes among Hispanic patients. Design, Setting, and Participants: This was a multicenter randomized clinical trial that took place across academic, nonprofit, safety-net, and community health care systems in urban, rural, and mountain/frontier regions of Colorado from January 2017 to January 2021. Self-identifying Hispanic adults with serious noncancer medical illness and limited prognosis were recruited. Data were collected and analyzed from July 2022 to July 2023. Interventions: Participants randomized to the intervention group received 5 home visits from a bilingual, bicultural lay patient navigator; participants randomized to control received care as usual. Both groups received culturally tailored educational materials. Investigators/outcome accessors remained blinded to participant assignment. Main Outcomes and Measures: Change in score from baseline to 3 months on the Functional Assessment of Chronic Illness Therapy (FACIT) General quality of life (QOL) scale (primary outcome), Advance Care Planning (ACP) Engagement Survey, Brief Pain Inventory, Edmonton Symptom Assessment Scale, and FACIT Spiritual Well-Being subscale; at 6 months, advance directive (AD) documentation; and at 46 months or death, hospice utilization and length of stay, as well as aggressiveness of care at end of life. Results: Of 209 patients enrolled (mean [SD] age, 63.6 [14.3] years; 108 [51.7%] male), 105 patients were randomized to control and 104 patients to the intervention. There were no statistically significant differences in the change in mean (SD) QOL score between the intervention and control groups (5.0 [16.5] vs 4.3 [15.5]; P = .75). Participants in the intervention group, compared with the control group, had statistically significant greater increases in mean (SD) ACP engagement (0.8 [1.3] vs 0.1 [1.4]; P < .001) and were more likely to have a documented AD (62 of 104 [59.6%] vs 28 of 105 [26.9%]; P < .001). There were no statistically significant differences in mean (SD) change in pain intensity score (0-10) between patients in the intervention group compared with control (-0.4 [2.6] vs -0.5 [2.8]; P = .79), nor pain interference (-0.2 [3.7] vs -0.4 [3.7]; P = .71). Patients receiving the intervention were more likely to be referred to hospice compared with patients receiving control (19 of 43 patients [44.2%] vs 7 of 33 patients [21.2%]; P = .04) and less likely to receive aggressive care at end of life (27 of 42 patients [64.3%] vs 28 of 33 patients [84.8%]; P = .046). Conclusion and Relevance: In this randomized clinical trial, a culturally tailored patient navigator intervention did not improve QOL for patients. However, the intervention did increase ACP engagement, AD documentation, and hospice utilization in Hispanic persons with serious medical illness. Trial Registration: ClinicalTrials.gov Identifier: NCT03181750.

Anxiety and Depression in Metastatic Cancer: A Critical Review of Negative Impacts on Advance Care Planning and End-of-Life Decision Making With Practical Recommendations.

PURPOSE: Providers treating adults with advanced cancer increasingly seek to engage patients and surrogates in advance care planning (ACP) and end-of-life (EOL) decision making; however, anxiety and depression may interfere with engagement. The intersection of these two key phenomena is examined among patients with metastatic cancer and their surrogates: the need to prepare for and engage in ACP and EOL decision making and the high prevalence of anxiety and depression. METHODS: Using a critical review framework, we examine the specific ways that anxiety and depression are likely to affect both ACP and EOL decision making. RESULTS: The review indicates that depression is associated with reduced compliance with treatment recommendations, and high anxiety may result in avoidance of difficult discussions involved in ACP and EOL decision making. Depression and anxiety are associated with increased decisional regret in the context of cancer treatment decision making, as well as a preference for passive (not active) decision making in an intensive care unit setting. Anxiety about death in patients with advanced cancer is associated with lower rates of completion of an advance directive or discussion of EOL wishes with the oncologist. Patients with advanced cancer and elevated anxiety report higher discordance between wanted versus received life-sustaining treatments, less trust in their physicians, and less comprehension of the information communicated by their physicians. CONCLUSION: Anxiety and depression are commonly elevated among adults with advanced cancer and health care surrogates, and can result in less engagement and satisfaction with ACP, cancer treatment, and EOL decisions. We offer practical strategies and sample scripts for oncology care providers to use to reduce the effects of anxiety and depression in these contexts.

Reality of Family Caregiving for Hispanics With Alzheimer's Disease and Related Dementias: A Qualitative Analysis.

Background: Underserved Hispanic patients often experience unmet palliative care (PC) needs, particularly those with noncancer diagnoses such as Alzheimer's disease and related dementias. Most caregivers for Hispanic patients are family relatives who are less likely to use health care and community resources and experience high caregiver burden. We adapted a culturally tailored patient navigator (PN) intervention to provide support and improve PC outcomes for Hispanics with Alzheimer's disease and related dementias and their family caregivers (FCGs). Objectives: To explore Hispanic FCGs' experiences and perceptions of caregiving for a loved one, and how our PN intervention impacted their needs. Design: Qualitative descriptive. Setting/Subjects: FCG participants (n = 10) from our randomized control trial's intervention group were recruited from academic and safety net hospitals and community-based clinics across urban and rural Colorado in the United States. Measurements: Data obtained from individual, semistructured, 30-minute telephone interviews were recorded, transcribed, translated, and analyzed using NVivo and qualitative thematic analyses. Results: Four major themes emerged: Methods of Support, Cultural Expectations and Varying Family Contributions, Lack of Self-Care, and Awareness. Subthemes highlighted differing definitions of "contributing," role resentment, and interpersonal issues. Varying familial expectations underscore FCG strain when the burden of caregiving is not shared. Participants used various coping strategies as necessary support and gained awareness through education, guidance, and referrals to resources. Conclusions: PNs helped FCGs and patients beyond the intervention's scope. Providing support and awareness to FCGs, and incorporating cultural beliefs, may improve PC access to disparate populations and guide future interventions. Clinical Trial Registration Number NCT03181750.

Identifying Nursing Home Residents with Unmet Palliative Care Needs: A Systematic Review of Screening Tool Measurement Properties.

OBJECTIVES: Despite common use of palliative care screening tools in other settings, the performance of these tools in the nursing home has not been well established; therefore, the purpose of this review is to (1) identify palliative care screening tools validated for nursing home residents and (2) critically appraise, compare, and summarize the quality of measurement properties. DESIGN: Systematic review of measurement properties consistent with Consensus-based Standards for the selection of health Measurement Instruments (COSMIN) guidelines. SETTINGS AND PARTICIPANTS: Embase (Ovid), MEDLINE (PubMed), CINAHL (EBSCO), and PsycINFO (Ovid) were searched from inception to May 2022. Studies that (1) reported the development or evaluation of a palliative care screening tool and (2) sampled older adults living in a nursing home were included. METHODS: Two reviewers independently screened, selected, extracted data, and assessed risk of bias. RESULTS: We identified only 1 palliative care screening tool meeting COSMIN criteria, the NECesidades Paliativas (NEC-PAL, equivalent to palliative needs in English), but evidence for use with nursing home residents was of low quality. The NEC-PAL lacked robust testing of measurement properties such as reliability, sensitivity, and specificity in the nursing home setting. Construct validity through hypothesis testing was adequate but only reported in 1 study. Consequently, there is insufficient evidence to guide practice. Broadening the criteria further, this review reports on 3 additional palliative care screening tools identified during the search and screening process but which were excluded during full-text review for various reasons. CONCLUSION AND IMPLICATIONS: Given the unique care environment of nursing homes, we recommend future studies to validate available tools and develop new instruments specifically designed for nursing home use. In the meantime, we recommend that clinicians consider the evidence presented here and choose a screening instrument that best meets their needs.

A randomized controlled trial of a multi-modal palliative care intervention to promote advance care planning and psychological well-being among adults with advanced cancer: study protocol.

BACKGROUND: Up to half of adults with advanced cancer report anxiety or depression symptoms, which can cause avoidance of future planning. We present a study protocol for an innovative, remotely-delivered, acceptance-based, multi-modal palliative care intervention that addresses advance care planning (ACP) and unmet psychological needs commonly experienced by adults with metastatic cancer. METHODS: A two-armed, prospective randomized controlled trial (RCT) randomizes 240 adults with Stage IV (and select Stage III) solid tumor cancer who report moderate to high anxiety or depression symptoms to either the multi-modal intervention or usual care. The intervention comprises five weekly two-hour group sessions (plus a booster session one month later) delivered via video conferencing, with online self-paced modules and check-ins completed between the group sessions. Intervention content is based on Acceptance and Commitment Therapy (ACT), an acceptance, mindfulness, and values-based model. Participants are recruited from a network of community cancer care clinics, with group sessions led by the network's oncology clinical social workers. Participants are assessed at baseline, mid-intervention, post-intervention, and 2-month follow-up. The primary outcome is ACP completion; secondary outcomes include anxiety and depression symptoms, fear of dying, and sense of life meaning. Relationships between anxiety/depression symptoms and ACP will be evaluated cross-sectionally and longitudinally and theory-based putative mediators will be examined. DISCUSSION: Among adults with advanced cancer in community oncology settings, this RCT will provide evidence regarding the efficacy of the group ACT intervention on ACP and psychosocial outcomes as well as examine the relationship between ACP and anxiety/ depression symptoms. This trial aims to advance palliative care science and inform clinical practice. TRIAL REGISTRATION: Clinicaltrials.gov NCT04773639 on February 26, 2021.

Developing the Graduate Nurse Residency: An Oral History With Dr. Colleen Goode and Dr. Mary Krugman.

Health care organizations face the challenge of needing newly licensed nurses to fill positions and facilitate competent care for patients. Wide variation in graduate nurse orientation programs, a growing complexity of care, and high graduate nurse turnover rates led to the development of nurse residency programs. The historical perspectives of two nursing pioneers involved in the development of a national model for nurse residency programs provide context to the importance of creating a vision, providing leadership, and applying an evidence-based rationale to structure a series of learning and work experiences designed to support graduate nurses as they transition into their first professional nursing position. [J Contin Educ Nurs. 2022;53(4):171-177.].

International consensus-based policy recommendations to advance universal palliative care access from the American Academy of Nursing Expert Panels.

The purpose of this consensus paper was to convene leaders and scholars from eight Expert Panels of the American Academy of Nursing and provide recommendations to advance nursing's roles and responsibility to ensure universal access to palliative care. On behalf of the Academy, these evidence-based recommendations will guide nurses, policy makers, government representatives, professional associations, and interdisciplinary and community partners to integrate palliative nursing services across health and social care settings. Through improved palliative nursing education, nurse-led research, nurse engagement in policy making, enhanced intersectoral partnerships with nursing, and an increased profile and visibility of palliative care nurses worldwide, nurses can assume leading roles in delivering high-quality palliative care globally, particularly for minoritized, marginalized, and other at-risk populations. Part II herein provides a summary of international responses and policy options that have sought to enhance universal palliative care and palliative nursing access to date. Additionally, we provide ten policy, education, research, and clinical practice recommendations based on the rationale and background information found in Part I. The consensus paper's 43 authors represent eight countries (Australia, Canada, England, Kenya, Lebanon, Liberia, South Africa, United States of America) and extensive international health experience, thus providing a global context for the subject matter.

A scoping review of nurse-led advance care planning.

BACKGROUND: Advance care planning (ACP) supports persons at any age or health status to determine their values, goals, and preferences regarding future medical care. The American Nurses Association endorses nurses to facilitate ACP to promote patient- and family-centered care. PURPOSE: This project reviewed and synthesized literature on nurse-led ACP training models. METHODS: A scoping review used the Arksey and O'Malley Framework to identify: (a) ACP training model type, (b) nurse-led ACP recipients, (c) ACP in special populations, (d) ACP outcomes. FINDINGS: Of 33 articles reviewed, 19 included 11 established models; however, the primary finding was lack of a clearly identified evidence-based nurse-led ACP training model. DISCUSSION: Nurses are integral team members, well positioned to be a bridge of communication between patients and care providers. This is a call to action for nurse leaders, researchers, educators to collaborate to identify and implement an evidence-based, effective nurse-led ACP training model.

Transitioning to Remote Recruitment and Intervention: A Tale of Two Palliative Care Research Studies Enrolling Underserved Populations During COVID-19.

CONTEXT: During the COVID-19 pandemic, community-based research studies experienced prolonged shutdowns unless able to pivot to remote study procedures. OBJECTIVES: To describe the revision of two National Institutes of Health funded community-based palliative-focused clinical trials serving underserved populations to accommodate remote subject enrollment and examine its impact. METHODS: Transitioning to remote processes required multiple protocol and procedural changes including: altering informed consent processes; reducing the number of surveys administered; adding internet access as an inclusion criterion. To understand technological challenges, a screening tool was developed for one study to identify potentially eligible subjects' technology abilities and accessibility. RESULTS: Subjects' limited access to the internet and internet-enabled devices and discomfort with technology led to changes in recruitment patterns. Lack of familiarity with technology increased the amount of time it took research team members and subjects to connect remotely. Patients with significant cognitive and/or sensory deficits were at higher risk of experiencing fatigue during remote study visits leading to streamlining of data collection. A researcher-developed technology screening tool found that potential subjects were not comfortable with videoconferencing through Zoom expressing a preference for phone visits. Reduced travel time made scheduling remote study visits more efficient. CONCLUSION: Future community- and home-based palliative care trials must consider the best way to utilize remote recruitment, enrollment, and data collection processes to increase efficiency and reduce costs. Researchers should consider technology accessibility and train staff to ensure the greatest possible opportunity to recruit underserved populations who have traditionally been underrepresented in research studies.

American Academy of Nursing Expert Panel consensus statement on nursing's roles in ensuring universal palliative care access.

The purpose of this consensus paper was to convene leaders and scholars from eight Expert Panels of the American Academy of Nursing and provide recommendations to advance nursing's roles and responsibility to ensure universal access to palliative care. Part I of this consensus paper herein provides the rationale and background to support the policy, education, research, and clinical practice recommendations put forward in Part II. On behalf of the Academy, the evidence-based recommendations will guide nurses, policy makers, government representatives, professional associations, and interdisciplinary and community partners to integrate palliative nursing services across health and social care settings. The consensus paper's 43 authors represent eight countries (Australia, Canada, England, Kenya, Lebanon, Liberia, South Africa, United States of America) and extensive international health experience, thus providing a global context for the subject matter. The authors recommend greater investments in palliative nursing education and nurse-led research, nurse engagement in policy making, enhanced intersectoral partnerships with nursing, and an increased profile and visibility of palliative nurses worldwide. By enacting these recommendations, nurses working in all settings can assume leading roles in delivering high-quality palliative care globally, particularly for minoritized, marginalized, and other at-risk populations.

A Psychometric Evaluation of the Casey-Fink Graduate Nurse Experience Survey.

OBJECTIVE: The purpose of this study was to evaluate the psychometric properties of the Casey-Fink Graduate Nurse Experience Survey (CFGNES). BACKGROUND: Transitioning from the student role to professional nurse is challenging and stressful. Accurate measurement of role transition is important because of concerns regarding retention. METHODS: A secondary analysis of 71 919 graduate nurse responses to the CFGNES, collected 6 months into the Vizient/AACN residency program, was conducted. Psychometric testing included exploratory and confirmatory factor analysis. Internal consistency reliability was measured using Cronbach's α. RESULTS: Analysis revealed a consistent 5-factor solution. Factors were labeled job satisfaction, support, organize/prioritize care, role confidence, and professional socialization. Results demonstrated the CFGNES is a reliable and valid instrument for measuring perceptions of role transition. CONCLUSIONS: This study was needed to inform survey item revisions. The CFGNES continues to be valuable in providing voice to the needs of graduate nurses and evidence for improving nurse residency program outcomes.

Apoyo con Cariño: A Qualitative Analysis of a Palliative Care-Focused Lay Patient Navigation Intervention for Hispanics With Advanced Cancer.

A lay patient navigator model involving a culturally tailored intervention to improve palliative care outcomes for Hispanics with advanced cancer was tested across 3 urban and 5 rural cancer centers in Colorado. Five home visits were delivered over 3 months to 112 patients assigned to the randomized controlled trial's intervention arm. Grounded in core Hispanic values, visits addressed palliative care domains (advance care planning, pain/symptom management, and hospice utilization). To describe the content of patient navigator visits with patients/family caregivers, research team members analyzed 4 patient navigators' field notes comprising 499 visits to 112 patients. Based on previous work, codes were established a priori to identify ways patient navigators help patients/family caregivers. Key words and comments from field notes were classified into themes using ATLAS.ti and additional codes established. Nine common themes and exemplars describing the lay patient navigator role are described: activation/empowerment, advocacy, awareness, access, building rapport, providing support, exploring barriers, symptom screening, and the patient experience. Patient navigators used advocacy, activation, education, and motivational interviewing to address patient/family concerns and reduce barriers to quality palliative care in urban and rural settings. Adapting and implementing this model across cultures has potential to improve palliative care access to underserved populations.

Community-Based Conversations about Advance Care Planning for Underserved Populations Using Lay Patient Navigators.

Background: Widespread community engagement in advance care planning (ACP) is needed to overcome barriers to ACP implementation. Objective: Develop, implement, and evaluate a model for community-based ACP in rural populations with low English language fluency and health care access using lay patient navigators. Design: A statewide initiative to improve ACP setting/subjects-trained in a group session approach, bilingual patient navigators facilitated 1-hour English and Spanish ACP sessions discussing concerns about choosing a surrogate decision maker and completing an advance directive (AD). Participants received bilingual informational materials, including Frequently Asked Questions, an AD in English or Spanish, and Goal Setting worksheet. Measurement: Participants completed a program evaluation and 4-item ACP Engagement Survey (ACP-4) postsession. Results: For 18 months, 74 ACP sessions engaged 1034 participants in urban, rural, and frontier areas of the state; 39% were ethnically diverse, 69% female. A nurse or physician co-facilitated 49% of sessions. Forty-seven percent of participants completed an ACP-4 with 29% planning to name a decision maker in the next 6 months and 21% in the next 30 days; 31% were ready to complete an AD in the next 6 months and 22% in the next 30 days. Evaluations showed 98% were satisfied with sessions. Thematic analysis of interviews with facilitators highlighted barriers to delivering an ACP community-based initiative, strategies used to build community buy-in and engagement, and ways success was measured. Conclusion: Patient navigators effectively engaged underserved and ethnically diverse rural populations in community-based settings. This model can be adapted to improve ACP in other underserved populations.

Interprofessional Master of Science in Palliative Care: On Becoming a Palliative Care Community Specialist.

Background: Palliative care (PC) is a limited resource in health care systems. Many providers develop a PC interest later in their careers when it is difficult to relocate and compete for a limited number of training positions. In communities without an academic tertiary medical center, interprofessional PC community specialists are poised to deliver high-quality accessible PC to patients/families with needs beyond what can be addressed by primary care providers. Objective: An interprofessional 36-credit Master of Science in Palliative Care (MSPC) provides evidence-based education to nurses, pharmacists, physicians, physician assistants, social workers, spiritual care providers, psychologists, counselors, and other allied health professionals. Design: The predominantly online curriculum, designed and taught by an interprofessional faculty, focuses on interdisciplinary teamwork, communication skills, and practical application of biomedical and psycho-sociocultural-spiritual-ethics content. The pedagogy is narrative based, emulating in-person clinical experiences, with patient cases progressing throughout the curriculum. We have enrolled four student cohorts. Measurements: Student self-assessments pre-mid-post program. Results: Students highly rate curriculum with demonstrated application of knowledge in case integration assignments, simulations with standardized patients, and Capstone Projects. Students' self-assessed skills on a 39-item scale increased on average to the highest level of 5 (able to perform independently and teach others). Conclusions: The inaugural student cohort reports high levels of engagement and satisfaction, including mastery and synthesis of didactic and experiential content through case integration projects. Students who worked in PC/hospice settings have advanced in their professions; others have transitioned to PC work. The MSPC has capacity to meet projected PC workforce gaps.

Puente para cuidar (bridge to caring): A palliative care patient navigator and counseling intervention to improve distress in Latino/as with advanced cancer.

OBJECTIVE: Interventions are needed to improve mental health (ie, depression, anxiety) and palliative care (ie, symptoms, goals of care, and advance care planning) outcomes in Latino/as with advanced cancer. METHODS: An interprofessional study team used the ecological validity model and a participatory approach to adapt an evidence-based counseling intervention for Latino/as and integrate the counseling intervention with an evidence-based patient navigator intervention. Next, a small pilot study was conducted to understand and improve the feasibility of the integrated puente para cuidar intervention. RESULTS: Adaptations were made to language, literacy, and content of the counseling intervention, and video vignettes of the counseling case studies were produced on the recommendation of Latino/a stakeholders. Bicultural, bilingual patient navigators were used as "cultural brokers" between Latino/a patients and the counselor. The pilot study of puente para cuidar demonstrated feasibility based on participant perception of helpfulness and acceptability and nearing goal visit completion rates. CONCLUSIONS: A culturally adapted intervention to address mental health and palliative care needs in Latino/as with advanced cancer was developed from prior evidenced-based interventions using a cultural adaptation model and a participatory approach. The intervention is ready for effectiveness testing.

Global Survey of the Roles, Satisfaction, and Barriers of Home Health Care Nurses on the Provision of Palliative Care.

Background: The World Health Assembly urges members to build palliative care (PC) capacity as an ethical imperative. Nurses provide PC services in a variety of settings, including the home and may be the only health care professional able to access some disparate populations. Identifying current nursing services, resources, and satisfaction and barriers to nursing practice are essential to build global PC capacity. Objective: To globally examine home health care nurses' practice, satisfaction, and barriers, regarding existing palliative home care provision. Design: Needs assessment survey. Setting/Subjects: Five hundred thirty-two home health care nurses in 29 countries. Measurements: A needs assessment, developed through literature review and cognitive interviewing. Results: Nurses from developing countries performed more duties compared with those from high-income countries, suggesting a lack of resources in developing countries. Significant barriers to providing home care exist: personnel shortages, lack of funding and policies, poor access to end-of-life or hospice services, and decreased community awareness of services provided. Respondents identified lack of time, funding, and coverages as primary educational barriers. In-person local meetings and online courses were suggested as strategies to promote learning. Conclusions: It is imperative that home health care nurses have adequate resources to build PC capacity globally, which is so desperately needed. Nurses must be up to date on current evidence and practice within an evidence-based PC framework. Health care policy to increase necessary resources and the development of a multifaceted intervention to facilitate education about PC is indicated to build global capacity.

Cancer Pain Assessment and Measurement.

OBJECTIVES: To review the incidence of cancer pain; assessment of acute, chronic, and breakthrough pain; and provide insight on assessment approaches and reliable and valid instruments for clinical and research settings. DATA SOURCES: Peer-reviewed journal articles, book chapters, Internet. CONCLUSION: Quality pain management for patients with cancer is dependent on an accurate pain assessment and ongoing reassessment, considering the whole person. Being knowledgeable about evidence-based pain assessment practices is key. IMPLICATIONS FOR NURSING PRACTICE: Concentrated efforts to address pain assessment barriers and effectively report pain assessments in diverse populations are warranted, especially in this current health care environment when pain assessment is challenging.

Evaluation of Quality Improvement Initiatives to Improve and Sustain Advance Care Planning Completion and Documentation.

Despite the established benefit of advance care planning (ACP), achieving and sustaining high rates of ACP completion continue to be a challenge in many health care settings. A palliative care champions committee has targeted improving the ACP process through quality improvement initiatives at an academic medical center. To understand the impact of multiyear efforts to improve ACP, surveys of registered nurses, care coordinators, and medical assistants from inpatient and outpatient settings were conducted in 2013 and 2017 to explore comfort level with ACP, barriers preventing completion of ACP in daily practice, and suggestions for overcoming these barriers. The findings suggest strategies to further integrate ACP through interdisciplinary teams, including outpatient staff education, inpatient and outpatient quality improvement initiatives, and dedicated staff for ACP.