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.

The Impact of Advance Care Planning on Healthcare Professionals' Well-being: A Systematic Review.

CONTEXT: Advance care planning (ACP) improves care for patients with chronic illnesses and reduces family stress. However, the impact of ACP interventions on healthcare professionals' well-being remains unknown. OBJECTIVE: To systematically review the literature evaluating the impact of ACP interventions on healthcare professionals' well-being. METHODS: We followed the Joanna Briggs Institute methodology for systematic reviews and registered the protocol in PROSPERO (CRD42022346354). We included primary studies in all languages that assessed the well-being of healthcare professionals in ACP interventions. We excluded any studies on ACP in psychiatric care and in palliative care that did not address goals of care. Searches were conducted on April 4, 2022, and March 6, 2023 in Embase, CINAHL, Web of Science, and PubMed. We used the Mixed Methods Appraisal Tool for quality analysis. We present results as a narrative synthesis because of their heterogeneity. RESULTS: We included 21 articles published in English between 1997 and 2021 with 17 published after 2019. All were conducted in high-income countries, and they involved a total of 1278 participants. Three reported an interprofessional intervention and two included patient partners. Studies had significant methodological flaws but most reported that ACP had a possible positive impact on healthcare professionals' well-being. CONCLUSION: This review is the first to explore the impact of ACP interventions on healthcare professionals' well-being. ACP interventions appear to have a positive impact, but high-quality studies are scarce. Further research is needed, particularly using more rigorous and systematic methods to implement interventions and report results.

Gag order laws threaten nursing education and health equity.

Since 2021, some state legislators have passed laws that limit what public institutions can teach about discrimination. The number of these laws, also called gag orders, is increasing despite a national outcry against racism, homophobia and transphobia, and other forms of discrimination. Many nursing and other professional healthcare organizations have recognized and published statements decrying racism in healthcare and calling for an increased focus on health disparities and advancing health equity. Similarly, national research institutions and private grant funders are funding health disparities research. Nursing and other faculty in higher education, however, are being gagged by laws and executive orders which prevent them from teaching and conducting research about historic and contemporary health disparities. This commentary seeks to highlight the immediate and long-term impact of academic gag orders and to encourage action in opposition of such legislation. Supported by professional codes of ethics and discipline-specific education, we present concrete activities readers can use to address gag order legislation and in doing so, protect patient and community health outcomes.

Development and Evaluation of Serious Illness Conversation Training for Interprofessional Primary Care Teams.

Background: Early advance care planning (ACP) conversations are essential to deliver patient-centered care. While primary care is an ideal setting to initiate ACP, such as Serious Illness Conversations (SICs), many barriers exist to implement such conversations in routine practice. An interprofessional team approach holds promises to address barriers. Objective: To develop and evaluate SIC training for interprofessional primary care teams (IP-SIC). Design: An existing SIC training was adapted for IP-SIC and then implemented and evaluated for acceptability and effectiveness. Setting/Context: Interprofessional teams in 15 primary care clinics in five US states. Measures: Acceptability of the IP-SIC training and participants' self-reported likelihood to engage in ACP after the training. Results: The 156 participants were a mix of physicians and advanced practice providers (APPs) (44%), nurses and social workers (31%), and others (25%). More than 90% of all participants rated the IP-SIC training positively. While nurse/social worker and other groups were less likely than physician and APP group to engage in ACP before training (4.4, 3.7, and 6.4 on a 1-10 scale, respectively), all groups showed significant increase in likelihood to engage in ACP after the IP-SIC training (8.5, 7.7, and 9.2, respectively). Both physician/APP and nurse/social worker groups showed significant increase in likelihood to use the SIC Guide after the IP-SIC training, whereas an increase in likelihood to use SIC Guide among other groups was not statistically significant. Conclusion: The new IP-SIC training was well accepted by interprofessional team members and effective to improve their likelihood to engage in ACP. Further research exploring how to facilitate collaboration among interprofessional team members to maximize opportunities for more and better ACP is warranted. ClinicalTrials.gov ID: NCT03577002.

Feasibility and acceptability of advance care planning facilitated by nonphysician clinicians in Japanese primary care: Implementation pilot study.

Background: Implementation of advance care planning (ACP) is urgently needed in Japan, which is one of the most aging countries. This study tested the feasibility and acceptability of ACP facilitated by nonphysician clinicians, and identified barriers and enablers to implementing ACP into Japanese primary care. Methods: We trained 10 nonphysician clinicians (seven registered nurses, two medical social workers, and one care manager) in four primary care clinics as ACP facilitators. From April to June 2019, the trained facilitators had 19 ACP conversations with their patients. We conducted semistructured interviews and surveys regarding satisfaction and appropriateness of the ACP with patients, family members, ACP facilitators, and primary care physicians (PCPs) regarding their perceptions about ACP facilitated by nonphysician clinicians. Survey data were analyzed using descriptive statistics, and interviews were analyzed using a qualitative content analysis approach. Results: Majority of patients (75%) and family members (71%) were satisfied with ACP facilitated by nonphysician clinicians. In 71%, ACP facilitators and PCPs thought their ACP facilitation was appropriate and acceptable. Patients stated that they felt comfortable having ACP conversations with nonphysician clinicians. Identified barriers and enablers for ACP included: time restraints, size and organization of the clinics, settings for ACP conversations (ACP at the patient's home), team collaboration, and use of existing system to trigger ACP. Conclusions: Advance care planning facilitated by nonphysician clinicians was feasible and acceptable in Japanese primary care. Further studies are needed to explore strategies to overcome the barriers and enhance the enablers identified in this study.

Older Adults' Biobehavioral Fall Risks Were Affected by the COVID-19 Pandemic: Lessons Learned for Future Fall Prevention Research to Incorporate Multilevel Perspectives.

Background and Objectives: Examining the impact of coronavirus disease 2019 (COVID-19) pandemic on fall risks may provide insight into how multilevel factors as described in National Institute of Nursing Research's (NINR's) draft strategic plan can guide future fall prevention research. This article describes the affect of COVID-19 on fall risks from the perspective of older adults who live in assisted living facilities (ALFs), and explores the needs and approaches to implement fall prevention interventions at individual, social, community, and policy levels. Research Design and Methods: Exploratory survey study. Participants from a fall prevention study at 2 ALFs in Oregon were invited to the study. Survey questions asked about COVID experience, and changes in fall risks and day-to-day activities in Spring 2020. Quantitative responses were analyzed using descriptive statistics and Cohen's d effect sizes. Qualitative responses were analyzed using conventional content analysis. Results: Thirteen participants (age: M = 87.08, standard deviation = 6.52) responded. More participants reported feeling unsteady compared to pre-COVID data (38% vs. 62%), while the proportion of those worried about falling remained the same at 38%. Participants reported negligible decreases in importance of fall prevention and small decreases in confidence of fall prevention (Cohen's d = -0.13 and -0.21, respectively). The themes related to the affect of COVID on fall risks were: not to worry about fall risks but be cautious and physical activity is important, but it's hard during COVID. Impact of COVID on day-to-day activities were: varying degrees of concern for COVID, lack of social and community support, and finding unique ways to cope with COVID. Discussion and Implications: These individual-level perspectives suggest that older adults were at increased risk for falling. Results exemplify the influence of broader-level factors (e.g., social, community, and policy) on individual biobehavioral factors (e.g., fall risks and health behaviors), and illustrate the value of examining multilevel factors in future fall prevention research.

Protocol for a Cluster Randomized Trial Comparing Team-Based to Clinician-Focused Implementation of Advance Care Planning in Primary Care.

Introduction: For many patients, primary care is an appropriate setting for advance care planning (ACP). ACP focuses on what matters most to patients and ensuring health care supports patient-defined goals. ACP may involve interactions between a clinician and a patient, but for seriously ill patients ACP could be managed by a team. Methods: We are conducting a cluster randomized trial comparing team-based to clinician-focused ACP using the Serious Illness Care Program (SICP) in 42 practices recruited from 7 practice-based research networks (PBRNs). Practices were randomized to one of the two models. Patients are referred to the study after engaging in ACP in primary care. Our target enrollment is 1260 subjects. Patient data are collected at enrollment, six months and one year. Primary outcomes are patient-reported goal-concordant care and days at home. Secondary outcomes include additional patient measures, clinician/team experience, and practice-level measures of SICP implementation. Study Implementation: This trial was designed and is conducted by the Meta-network Learning and Research Center (Meta-LARC), a consortium of PBRNs focused on integrating engagement with patients, families, and other stakeholders into primary care research and practice. The trial pairs a comparative effectiveness study with implementation of a new program and is designed to balance fidelity to the assigned model with flexibility to allow each practice to adapt implementation to their environment and priorities. Our dissemination will report the results of comparing the two models and the implementation experience of the practices to create guidance for the spread of ACP in primary care.

Feasibility and Acceptability of Nurse-Led Primary Palliative Care for Older Adults with Chronic Conditions: A Pilot Study.

BACKGROUND: Many older adults live with serious illness for years before their death. Nurse-led primary palliative care could improve their quality of life and ability to stay in their community. OBJECTIVES: To assess feasibility and acceptability of a nurse-led Transitional Palliative Care (TPC) program for older adults with serious illness. METHODS: The study was a pilot trial of the TPC program in which registered nurses assisted patients with symptom management, communication with care providers, and advance care planning. Forty-one older adults with chronic conditions were enrolled in TPC or standard care groups. Feasibility was assessed through enrollment and attrition rates and degree of intervention execution. Acceptability was assessed through surveys and exit interviews with participants and intervention nurses. RESULTS: Enrollment rate for those approached was 68%, and completion rate for those enrolled was 71%. The TPC group found the intervention acceptable and helpful and was more satisfied with care received than the control group. However, one-third of participants perceived that TPC was more than they needed, despite the number of symptoms they experienced and the burdensomeness of their symptoms. More than half of the participants had little to no difficulty participating in daily activities. CONCLUSION: This study demonstrated that the nurse-led TPC program is feasible, acceptable, and perceived as helpful. However, further refinement is needed in selection criteria to identify the population who would most benefit from primary palliative care before future test of the efficacy of this intervention.