Healthcare self-management support of stroke patients after discharge: A conceptual analysis using Rodger's evolutionary approach.

AIM(S): To explore the meaning of healthcare self-management support for post-discharged stroke patients. METHOD: Rodgers' evolutionary approach was used to identify antecedents, attributes, related terms, surrogate terms and consequences. DATA SOURCE: Literature from 2012 to 2022 was searched from MEDLINE, CINAHL, PsycINFO and Google Scholar. RESULTS: Three antecedents preceded healthcare self-management support for post-discharged stroke patients: loss of inpatient support, preparedness for self-management and presence of self-management support. Healthcare self-management support for post-discharged stroke patients was defined by eight attributes: pre-discharge assessment and planning; provision of continuous education and training; collaborative goal-setting; reinforcement and documentation of vital information; coordination of post-discharge care; provision of rehabilitation support and promoting community reintegration; provision of counselling support; and using clear communication, patient empowerment and promoting self-efficacy. The identified consequences of the concept were as follows: improved patient outcomes; improved life quality; decreased healthcare cost; decreased re-admission rate and inpatient care burden; and decreased complication rate. CONCLUSION: Healthcare self-management support for post-discharged stroke patients is an emerging concept that can help to significantly improve stroke patients' health outcomes and life quality. However, its applicability is uncertain considering the workload, time and resources available to healthcare professionals. There is a need for future studies to focus on the feasibility and applicability of this concept in clinical practice and to identify any challenges healthcare providers may have in supporting stroke patients after discharge. IMPACT: This concept analysis brings clarity to the concept of healthcare self-management support of post-discharged stroke patients and distinguishes it from other self-management supports. It provides an opportunity for further studies and a pathway for generalized healthcare self-management support for stroke patients after discharge to improve health outcomes and quality of life. NO PATIENT OR PUBLIC CONTRIBUTION: No patients, service users, caregivers or members of the public were involved in conducting this concept analysis.

A Randomized Trial of a Multifactorial Strategy to Prevent Serious Fall Injuries.

BACKGROUND: Injuries from falls are major contributors to complications and death in older adults. Despite evidence from efficacy trials that many falls can be prevented, rates of falls resulting in injury have not declined. METHODS: We conducted a pragmatic, cluster-randomized trial to evaluate the effectiveness of a multifactorial intervention that included risk assessment and individualized plans, administered by specially trained nurses, to prevent fall injuries. A total of 86 primary care practices across 10 health care systems were randomly assigned to the intervention or to enhanced usual care (the control) (43 practices each). The participants were community-dwelling adults, 70 years of age or older, who were at increased risk for fall injuries. The primary outcome, assessed in a time-to-event analysis, was the first serious fall injury, adjudicated with the use of participant report, electronic health records, and claims data. We hypothesized that the event rate would be lower by 20% in the intervention group than in the control group. RESULTS: The demographic and baseline characteristics of the participants were similar in the intervention group (2802 participants) and the control group (2649 participants); the mean age was 80 years, and 62.0% of the participants were women. The rate of a first adjudicated serious fall injury did not differ significantly between the groups, as assessed in a time-to-first-event analysis (events per 100 person-years of follow-up, 4.9 in the intervention group and 5.3 in the control group; hazard ratio, 0.92; 95% confidence interval [CI], 0.80 to 1.06; P = 0.25). The rate of a first participant-reported fall injury was 25.6 events per 100 person-years of follow-up in the intervention group and 28.6 events per 100 person-years of follow-up in the control group (hazard ratio, 0.90; 95% CI, 0.83 to 0.99; P = 0.004). The rates of hospitalization or death were similar in the two groups. CONCLUSIONS: A multifactorial intervention, administered by nurses, did not result in a significantly lower rate of a first adjudicated serious fall injury than enhanced usual care. (Funded by the Patient-Centered Outcomes Research Institute and others; STRIDE ClinicalTrials.gov number, NCT02475850.).

Is This ACP? A Focus Group Study of Patient Experiences of Advance Care Planning.

BACKGROUND: To date, most research on patients' experiences with advance care planning (ACP) focuses on motivations to engage in discussions and how patients prepare. Gaps remain in understanding how non-critically ill Medicare patients perceive ACP encounters, including how they characterize positive and negative experiences with ACP. OBJECTIVES: Understanding these patients' perceptions is imperative as Medicare has sought to incentivize provision of ACP services via two billing codes in 2016. DESIGN: Qualitative focus group study. Thematic analysis was performed to assess participants ACP experience. PARTICIPANTS: Medicare beneficiaries who had engaged in or were billed for ACP. KEY RESULTS: Seven focus groups were conducted with 34 Medicare beneficiaries who had engaged in ACP across 5 US health systems. Participants described a spectrum of perceptions regarding ACP, and a range of delivery approaches, including group ACP, discussions with specialists during serious illness, and ACP in primary care settings during wellness visits. Despite being billed for ACP or having ACP services noted in their medical record, many did not recognize that they had engaged in ACP, expressed lack of clarity over the term "ACP," and were unaware of the Medicare billing codes. Among participants who described quality patient-centered ACP experiences, three additional themes were identified: trusted and established patient/clinician relationships, transparent communication and documentation, and an understanding that ACP is revisable. Participants offered recommendations for clinicians and health systems to improve the patient ACP experience. CONCLUSIONS: Findings include actionable steps to promote patient-centered ACP experiences, including clinician training to support improved communication and facilitating shared decision-making, allocating sufficient clinical time for discussions, and ensuring that documentation of preferences is clear and accessible. Other approaches such as group ACP and ACP navigators may help to support patient interests within clinical constraints and need to be further explored.

A systematic evaluation of advance care planning patient educational resources.

BACKGROUND: Advance care planning (ACP) conversations help individuals exercise autonomy and make informed decisions about their care. There are many ACP resources available to support the process of advance care planning, yet available resources not universally accepted and under-utilized in clinical practice. OBJECTIVE: This study aims to systematically evaluate commonly available general ACP patient educational resources using a comprehensive approach to assess elements ranging from resource inclusion to health literacy. DESIGN: Systematic evaluation of general ACP educational resources METHODS: ACP educational resources were systematically identified and evaluated for: Patient Education Materials Assessment Tool (PEMAT) score, Flesch-Kincaid reading ease and grade level, cost, languages available, and categories of content including Advance directive/Healthcare proxy, Physician Order for Life-Sustaining Treatment (POLST), Living will, values, preferences, and goals. RESULTS: Educational resources (n = 20) were identified. These resources were classified as information resources, workbooks, interactive websites, or and activities/conversation guides. The average PEMAT understandability score was 86 (range 58-100) and the average actionability was 90 (range 40-100). Two resources met Flesch-Kincaid reading ease and grade level. Eight were available in English only, nine in two languages, and three in more than two languages. Three explicitly discussed completion of POLST forms. The majority of the resources adequately addressed the content of advanced directives and health care proxy, values, goals, and preferences for future care. The level of time commitment required to use each resource also varied considerably. CONCLUSION: We present a comprehensive evaluation of resources to support ACP. Using the Transtheoretical Model, we provide a guide for the use of these educational resources based on patient readiness. This review allows clinicians to identify aspects of each resource that may be helpful in preparing older adults for future healthcare decsions. Our analysis has identified the need to continue to refine these educational resources so that they can reach a broad population with varying needs. Advance care planning (ACP) conversations help individuals exercise autonomy and make informed decisions about their care. There are many ACP educational resources available to support the process of advance care planning, yet available resources are not universally accepted and under-utilized in clinical practice. We present a comprehensive evaluation of 20 educational resources to support ACP. Educational resources were identified and evaluated for: Patient Education Materials Assessment Tool (PEMAT) score, Flesch-Kincaid reading ease and grade level, cost, languages available, and categories of content. Using the Transtheoretical Model, we provide a guide for the use of these educational resources based on patient readiness. This review allows clinicians to identify aspects of each resource that may be helpful in preparing older adults for future healthcare decisions. Our analysis has identified the need to continue to refine these educational resources so that they can reach a broad population with varying needs.

Prospective Evaluation of a Multifaceted Intervention to Improve Outcomes in Intensive Care: The Promoting Respect and Ongoing Safety Through Patient Engagement Communication and Technology Study.

OBJECTIVES: Studies comprehensively assessing interventions to improve team communication and to engage patients and care partners in ICUs are lacking. This study examines the effectiveness of a patient-centered care and engagement program in the medical ICU. DESIGN: Prospective intervention study. SETTING: Medical ICUs at large tertiary care center. PATIENTS: Two thousand one hundred five patient admissions (1,030 before and 1,075 during the intervention) from July 2013 to May 2014 and July 2014 to May 2015. INTERVENTIONS: Structured patient-centered care and engagement training program and web-based technology including ICU safety checklist, tools to develop shared care plan, and messaging platform. Patient and care partner access to online portal to view health information, participate in the care plan, and communicate with providers. MEASUREMENTS AND MAIN RESULTS: Primary outcome was aggregate adverse event rate. Secondary outcomes included patient and care partner satisfaction, care plan concordance, and resource utilization. We included 2,105 patient admissions, (1,030 baseline and 1,075 during intervention periods). The aggregate rate of adverse events fell 29%, from 59.0 per 1,000 patient days (95% CI, 51.8-67.2) to 41.9 per 1,000 patient days (95% CI, 36.3-48.3; p < 0.001), during the intervention period. Satisfaction improved markedly from an overall hospital rating of 71.8 (95% CI, 61.1-82.6) to 93.3 (95% CI, 88.2-98.4; p < 0.001) for patients and from 84.3 (95% CI, 81.3-87.3) to 90.0 (95% CI, 88.1-91.9; p < 0.001) for care partners. No change in care plan concordance or resource utilization. CONCLUSIONS: Implementation of a structured team communication and patient engagement program in the ICU was associated with a reduction in adverse events and improved patient and care partner satisfaction.

Effectiveness of narrative pedagogy in developing student nurses' advocacy role.

BACKGROUND: The literature and research on nursing ethics and advocacy has shown that generally very few nurses and other clinicians will speak up about an issue they have witnessed regarding a patient advocacy concern and that often advocacy in nursing is not learned until after students have graduated and begun working. OBJECTIVE: To evaluate the effectiveness of narrative pedagogy on the development of advocacy in student nurses, as measured by the Protective Nursing Advocacy Scale. DESIGN: We tested the hypothesis that use of a narrative pedagogy assignment related to ethics would improve student nurse's perception of their advocacy role as measured by the Protective Nursing Advocacy Scale using a quasi-experimental nonrandomized study using a pre-test, intervention, post-test design. Data collection occurred during class time from October 2012 to December 2012. The Protective Nursing Advocacy Scale tool was administered to students in class to assess their baseline and was administered again at the completion of the educational intervention to assess whether narrative pedagogy was effective in developing the nursing student's perception of their role as a patient advocate. ETHICAL CONSIDERATIONS: Students were informed that their participation was voluntary and that the data collected would be anonymous and confidential. The survey was not a graded assignment, and students did not receive any incentive to participate. The institutional review board of the college determined the study to be exempt from review. SETTING: School of Nursing at a small liberal arts college in the Northeastern United States. PARTICIPANTS: A consecutive, nonprobability sample of 44 senior-level nursing students enrolled in their final nursing semester was utilized. FINDINGS: Results indicated significant differences in student nurse's perception of their advocacy role related to environment and educational influences following an education intervention using an ethics digital story. CONCLUSION: Using the Protective Nursing Advocacy Scale, we were able to measure the effectiveness of narrative pedagogy on nursing student's perception of the nurse's advocacy role.

A description of nurses' decision-making in managing electrocardiographic monitor alarms.

AIMS AND OBJECTIVES: To describe the cues and factors that nurses use in their decision-making when responding to clinical alarms. BACKGROUND: Alarms are designed to be very sensitive, and as a result, they are not very specific. Lack of adherence to the practice standards for electrocardiographic monitoring in hospital settings has been observed, resulting in overuse of the electrocardiographic monitoring. Monitoring without consideration of clinical indicators uses scarce healthcare resources and may even produce untoward circumstances because of alarm fatigue. With so many false alarms, alarm fatigue represents a symptom of a larger problem. It cannot be fixed until all of the factors that contribute to its existence have been examined. DESIGN: This was a qualitative descriptive study. METHOD: This study was conducted at an academic medical centre located in the Northeast United States. Eight participants were enrolled using purposive sampling. Nurses were observed for two three-hour periods. Following each observation, the nurse was interviewed using the critical decision method to describe the cognitive processes related to the alarm activities. Qualitative data from the conducted interviews were analysed via an a priori framework founded in the critical decision method. RESULTS: This study reveals information, experience, guidance and decision-making as the four prominent categories contributing to nurses' decision-making in relation to alarm management. Managing technology was a category not identified a priori that emerged in the data analysis. CONCLUSION: Nurses revealed a breadth of information needed to adequately identify and interpret monitor alarms, and how they used that information to put the alarms into the particular context of an individual patient's situations. RELEVANCE TO CLINICAL PRACTICE: Understanding the cues and factors nurses use when responding to cardiac alarms will guide the development of learning experiences and inform policies to guide practice.

Nursing Students' Perception of Caring for Culturally Diverse Patients: A Hermeneutic Phenomenological Study.

BACKGROUND: This study examined the phenomenon of prelicensure nursing students caring for culturally diverse patients. METHOD: Individual interviews were conducted with undergraduate nursing students using a hermeneutic phenomenological approach. Qualitative research experts conducted the interviews, transcribed the data, and followed van Manen's methodology for analysis. RESULTS: Eleven nursing students participated in the study. Data were collected from April to August 2022. The average length of the student interviews was 32 minutes. Four themes were identified: (1) communication issues; (2) access to care; (3) nurse background; and (4) trust and respect. CONCLUSION: This study highlights the importance of caring for culturally diverse patients. Policymakers and health care leaders can use the findings to support legislative proposals for enhancing culturally diverse patient safety and health equity. Based on these findings, nurse educators and preceptors can adapt their clinical teaching approaches accordingly, and nurse managers can benefit from the results when hiring new graduate nurses. [J Nurs Educ. 2024;63(6):373-379.].

An integrated review: connecting Covid-era hospital visiting policies to family engagement.

Introduction: Family engagement and patient-family-centered care are vitally important to improve outcomes for patients, families, providers, hospitals, and communities. Both constructs prioritize providers forming partnerships with patients and their families. The domains of family-engaged care include presence, communication, shared-decision making, family needs, contribution to care, and collaboration at the institutional level. This integrative review describes the extent to which the domains of family engagement are present in the literature about Covid-era hospital visiting policies. Methods: A search of four databases resulted in 127 articles and one added through data mining. After review, 28 articles were synthesized and analyzed into an integrative review of family engagement in the hospital with Covid-era visiting policies as the backdrop. Results: The 28-article review resulted in an international, multidisciplinary perspective of diverse study designs. The review's sample population includes 6,984 patients, 1,126 family members, 1,174 providers, 96 hospitals, 50 health centers, 1 unit, and 257 documents. While all the domains are represented, presence is the prevailing domain, identified in 25 out of the 28 (89%). Discussion: Presence is recognized as facilitating the other domains. Because the concept of collaboration is largely absent in the literature, it may provide healthcare institutions with a growth opportunity to facilitate and promote family engagement. This review is the first step in operationalizing family engagement in the hospital setting, especially when presence is challenging.

Examining the Impact of Selected Sociodemographic Factors and Cancer-Related Fatalistic Beliefs on Patient Engagement via Health Information Technology Among Older Adults: Cross-Sectional Analysis.

BACKGROUND: Despite the role of health information technology (HIT) in patient engagement processes and government incentives for HIT development, research regarding HIT is lacking among older adults with a high burden of chronic diseases such as cancer. This study examines the role of selected sociodemographic factors and cancer-related fatalistic beliefs on patient engagement expressed through HIT use for patient engagement in adults aged ≥65 years. We controlled for cancer diagnosis to account for its potential influence on patient engagement. OBJECTIVE: This study has 2 aims: to investigate the role of sociodemographic factors such as race, education, poverty index, and psychosocial factors of cancer fatalistic beliefs in accessing and using HIT in older adults and to examine the association between access and use of HIT in the self-management domain of patient activation that serves as a precursor to patient engagement. METHODS: This is a secondary data analysis of a subset of the Health Information National Trend Survey (Health Information National Trend Survey 4, cycle 3). The subset included individuals aged ≥65 years with and without a cancer diagnosis. The relationships between access to and use of HIT to several sociodemographic variables and psychosocial factors of fatalistic beliefs were analyzed. Logistic and linear regression models were fit to study these associations. RESULTS: This study included 180 individuals aged ≥65 years with a cancer diagnosis and 398 without a diagnosis. This analysis indicated that having less than a college education level (P=<.001), being an individual from an ethnic and minority group (P=<.001), and living in poverty (P=.001) were significantly associated with decreased access to HIT. Reduced HIT use was associated with less than a college education (P=.001) and poverty(P=.02). This analysis also indicated that fatalistic beliefs about cancer were significantly associated with lower HIT use (P=.03). Specifically, a 1-point increase in the cancer fatalistic belief score was associated with a 36% decrease in HIT use. We found that controlling for cancer diagnosis did not affect the outcomes for sociodemographic variables or fatalistic beliefs about cancer. However, patients with access to HIT had a self-management domain of patient activation (SMD) score of 0.21 points higher (P=.003) compared with patients who did not have access. SMD score was higher by 0.28 points (P=.002) for individuals who used HIT and 0.14 points higher (P=.04) who had a prior diagnosis of cancer. CONCLUSIONS: Sociodemographic factors (education, race, poverty, and cancer fatalistic beliefs) impact HIT access and use in older adults, regardless of prior cancer diagnosis. Among older adults, HIT users report higher self-management, which is essential for patient activation and engagement.

"I liked just that it was a communal thing": Feasibility and acceptability of engaging with transgender and gender-diverse persons in a digital photovoice research study on commercial cigarette smoking risk and protective factors.

Background: Commercial cigarette smoking is the leading modifiable risk factor for more than 16 types of cancer. Over one-third (35.5%) of transgender and gender-diverse (TGD) adults smoke cigarettes compared to 14.9% of cisgender adults. The objective of this paper is to describe the feasibility of enrolling and engaging with TGD persons in a digital photovoice study to examine smoking risk and protective factors through real-world experiences (Project SPRING). Methods: The study comprised a purposeful sample of 47 TGD adults aged ≥18 years who currently smoke and live in the United States (March 2019-April 2020). They participated in three weeks of digital photovoice data collection using Facebook and Instagram closed groups. A subsample participated in focus groups to explore smoking risks and protective factors in greater depth. We summarized the enrollment strategies and accrual rates, participant engagement (posts, comments, and reactions) during the photovoice data collection to assess study feasibility, and respondent feedback on acceptability and likability during and after the study. Results: Participants were recruited via Facebook/Instagram advertising (n = 33) and via Craigslist/word-of-mouth (n = 14). Costs ranged from $29 via Craigslist/word-of-mouth to $68 per recruited participant via Facebook/Instagram advertising. On average, participants posted 17 pictures of smoking risks/protective factors, commented 15 times on others' posts, and had 30 reactions within their group over 21 days. Participants' rating of the acceptability and likability of the study were positive based on closed- and open-ended feedback. Conclusion: The findings of this report will inform future research to engage with TGD community-engaged research to develop culturally tailored interventions to reduce smoking prevalence among TGD individuals.

US clinicians' perspectives on advance care planning for persons with dementia: A qualitative study.

BACKGROUND: Although advance care planning (ACP) for persons with dementia (PWD) can promote patient-centered care by aligning future healthcare with patient values, few PWD have documented ACPs for reasons incompletely understood. The objective of this paper is to characterize the perceived value of, barriers to, and successful strategies for completing ACP for PWD as reported by frontline clinicians. METHODS: Qualitative study using semi-structured interviews (August 2018-December 2019) with clinicians (physicians, nurse practitioners, nurses, social workers) at 11 US health systems. Interviews asked clinicians about their approaches to ACP with PWDs, including how ACP was initiated, what was discussed, how carepartners were involved, how decision-making was approached, and how decision-making capacity was assessed. RESULTS: Of 75 participating generalist and specialty clinicians from across the United States, 61% reported conducting ACP with PWD, of whom 19% conducted ACP as early as possible with PWD. Three themes emerged: value of early ACP preserves PWD's autonomy in cases of differing PWD carepartner values, acute medical crises, and clinician paternalism; barriers to ACP with PWD including the dynamic and subjective assessment of patient decision-making capacity, inconsistent awareness of cognitive impairment by clinicians, and the need to balance patient and family carepartner involvement; and strategies to support ACP include clarifying clinicians' roles in ACP, standardizing clinicians' approach to PWD and their carepartners, and making time for ACP and decision-making assessments that allow PWD and carepartner involvement regardless of the patients' capacity. CONCLUSIONS: Clinicians found early ACP for PWD valuable in promoting patient-centered care among an at-risk population. In sharing their perspectives on conducting ACP for PWD, clinicians described challenges that are amenable to changes in training, workflow, and material support for clinician time. Clinical practices need sustainable scheduling and financial support models.

Understanding primary palliative nursing education in undergraduate nursing programs.

BACKGROUND: Nurses are the largest segment of health care professionals and often the first one to interact with individuals about their health and illness. Ensuring nurses have the education to care for individuals with serious illness is essential to quality health care. The new AACN Essentials: Competencies for Professional Nursing Education delineates hospice/palliative/supportive care as one of four spheres of nursing care. Surveying undergraduate schools/colleges of nursing in Massachusetts about content pertaining to care of individuals with serious illness provides the foundation for a state strategy to ensure quality primary palliative education for undergraduate nursing students. METHODS: A Massachusetts statewide college/school of nursing survey approach to assessing primary palliative nursing education within undergraduate baccalaureate nursing curricula was performed from June 2020 to December 2020. Because the project was a collaboration with the Deans of the college/school of nursing, the survey identified the programs. RESULTS: Survey results revealed that only a small number of Massachusetts nursing programs are preparing nurses with specific and formal primary palliative nursing education. However, programs are open to support and resources. CONCLUSION: The survey provided information to inform a successful strategy to support primary palliative nursing education within Massachusetts undergraduate baccalaureate nursing curricula. A survey approach can serve as a model for other states.

Documentation Burden in Nursing and Its Role in Clinician Burnout Syndrome.

OBJECTIVES: The purpose of this study is to understand the relationship between documentation burden and clinician burnout syndrome in nurses working in direct patient care. The Office of the National Coordinator considers documentation burden a high priority problem. However, the presence of documentation burden in nurses working in direct patient care is not well known. Furthermore, the presence of documentation burden has not been linked to the development of clinician burnout syndrome. METHODS: This paper reports that the results of a cross-sectional survey study comprised of three tools: (1) The burden of documentation for nurses and mid-wives survey, (2) the system usability scale, and (3) Maslach's burnout inventory for medical professionals. RESULTS: Documentation burden has a weak to moderate correlation to clinician burnout syndrome. Furthermore, poor usability of the electronic health record (EHR) is also associated with documentation burden and clinician burnout syndrome. CONCLUSION: This study suggests that there is a relationship between documentation burden and clinician burnout syndrome. The correlation of poor usability and domains of clinician burnout syndrome implies the need for more work on improving the usability of EHR for nursing documentation. Further study regarding the presence of documentation burden and its correlation to clinician burnout syndrome should focus on specific areas of nursing to understand the drivers of documentation burden variation within and across specialty domains.

"Don't Talk to Them About Goals of Care": Understanding Disparities in Advance Care Planning.

BACKGROUND: Structurally marginalized groups experience disproportionately low rates of advance care planning (ACP). To improve equitable patient-centered end-of-life care, we examine barriers and facilitators to ACP among clinicians as they are central participants in these discussions. METHOD: In this national study, we conducted semi-structured interviews with purposively selected clinicians from 6 diverse health systems between August 2018 and June 2019. Thematic analysis yielded themes characterizing clinicians' perceptions of barriers and facilitators to ACP among patients, and patient-centered ways of overcoming them. RESULTS: Among 74 participants, 49 (66.2%) were physicians, 16.2% were nurses, and 13.5% were social workers. Most worked in primary care (35.1%), geriatrics (21.1%), and palliative care (19.3%) settings. Clinicians most frequently expressed difficulty discussing ACP with certain racial and ethnic groups (African American, Hispanic, Asian, and Native American) (31.1%), non-native English speakers (24.3%), and those with certain religious beliefs (Catholic, Orthodox Jewish, and Muslim) (13.5%). Clinicians were more likely to attribute barriers to ACP completion to patients (62.2%), than to clinicians (35.1%) or health systems (37.8%). Three themes characterized clinicians' difficulty approaching ACP (preconceived views of patients' preferences, narrow definitions of successful ACP, and lack of institutional resources), while the final theme illustrated facilitators to ACP (acknowledging bias and rejecting stereotypes, mission-driven focus on ACP, and acceptance of all preferences). CONCLUSIONS: Most clinicians avoided ACP with certain racial and ethnic groups, those with limited English fluency, and persons with certain religious beliefs. Our findings provide evidence to support development of clinician-level and institutional-level interventions and to reduce disparities in ACP.

Understanding The Use Of Medicare Procedure Codes For Advance Care Planning: A National Qualitative Study.

In 2016 Medicare introduced advance care planning Current Procedural Terminology (CPT) codes to reimburse clinicians for time spent providing the service. Despite recent increases, use of these codes remains low for reasons incompletely captured by quantitative research. To further identify barriers and facilitators to code use for Medicare fee-for-service enrollees, we conducted case studies at eleven health systems, including 272 interviews with clinicians, administrators, and key leadership. Five themes related to use of the new codes emerged: code-based constraints to billing, burdening patients with unexpected charges, ethical concerns with billing for discussion of advance care plans, incentives to signal the importance of their use in billing, and increasing both workflow burden and the need for institutional supports and training. Respondents also observed that use was facilitated by health systems' investment in clinician training and in processes to audit the codes' use. Our findings suggest that increased reimbursement, strong institutional commitment and support, and streamlined workflow could improve the use of the new CPT codes to document receipt of and ensure access to Medicare advance care planning.

Educational Resources and Self-Management Support to Engage Patients in Advance Care Planning: An Interpretation of Current Practice in the US.

BACKGROUND: Educational resources and decision aids help patients, their care partners and health care providers prepare for and confidently engage in Advance Care Planning (ACP). Incorporating ACP resources as part of a self-management approach may lead to fuller engagement with ACP beyond identifying a surrogate decision-maker, towards supporting a person to identify their values and goals and to communicate them with their care partners and health care providers. OBJECTIVE: To examine the use of educational resources and decision aids to support self-management of ACP in 11 health systems across the US. METHODS: This study was a qualitative interview study examining barriers and facilitators to ACP. Guided by interpretative description and the chronic care model, we sought to describe how health care stakeholders (clinicians and administrators) and patients use ACP resources to support engagement with ACP. RESULTS: 274 health care stakeholders were interviewed, and 7 patient focus groups were conducted across 11 health systems. The majority of participants reported using resources to support completion of preference documentation, with fewer participants using resources that promote more engagement in ACP. ACP resources were reported as valuable in preparing for and complementing a complex, interpersonal, and interprofessional process. Barriers to using resources included a lack of a defined workflow and time. CONCLUSION: Our data suggest that ACP resources that promote engagement are valued but under-utilized in practice. The use of ACP resources with an inter-professional team and a self-management approach is a promising strategy to mitigate the barriers of ACP implementation while improving engagement in ACP.

Advance Care Planning Experiences Among Sexual and Gender Minority People.

Importance: Advance care planning (ACP) can promote patient-centered end-of-life (EOL) care and is intended to ensure that medical treatments are aligned with patient's values. Sexual and gender minority (SGM) people face greater discrimination in health care settings compared with heterosexual, cisgender people, but it is unknown whether such discrimination occurs in ACP and how it might affect the ACP experiences of SGM people. Objectives: To increase understanding of barriers and facilitators of ACP facing SGM individuals. Design, Setting, and Participants: This mixed-methods national study of ACP included a telephone survey of self-identified SGM and non-SGM participants in a nationally representative sample drawn from a larger omnibus national panel by SSRS. Qualitative interviews were conducted with a subset of survey participants who identified as SGM. Data were collected from October 2020 to March 2021. Exposures: Self-identified SGM. Main Outcomes and Measures: The survey included 4 items from the validated ACP Engagement Survey, adapted to capture experiences of discrimination. Interviews asked about participants' experiences with ACP, including the appointment of medical decision-makers, sharing preferences, and experiences within the health care system more broadly. Results: A total of 603 adults participated in the survey, with 201 SGM individuals (mean [SD] age, 45.7 [18.7] years; 101 [50.2%] female; 22 [10.9%] Black, 37 [18.4%] Hispanic, and 140 [69.7%] White individuals) and 402 non-SGM individuals (mean [SD] age, 53.7 [19.2] years; 199 [49.5%] female; 35 [8.7%] Black, 41 [10.2%] Hispanic, and 324 [80.6%] White individuals). Regarding reasons for not completing ACP, SGM respondents, compared with non-SGM respondents, were more likely to say "I don't see the need" (72 [73.5%] vs 131 [57.2%], P = .006) and "I feel discriminated against by others" (12 [12.2%] vs 6 [2.6%], P < .001). Of 25 completed interviews among SGM participants, 3 main themes were identified: how fear and experiences of discrimination affect selection of clinicians and whether to disclose SGM identity; concerns about whether EOL preferences and medical decision-makers would be supported; and a preference to discuss EOL decisions and values outside of clinical settings. Conclusions and Relevance: This study found that fear of disclosing sexual orientation or gender identity information and discrimination are important barriers to ACP for SGM in clinical settings, but discussions of preferences and values still occur between many SGM people and medical decision-makers. More SGM-specific patient-centered care might better support these discussions within the health care system. Furthermore, health systems can facilitate improved engagement by supporting clinician sensitivity training, including guidance on documentation and requirements.