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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.].
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Cultural Diversity , Education, Nursing, Baccalaureate , Hermeneutics , Qualitative Research , Students, Nursing , Humans , Students, Nursing/psychology , Students, Nursing/statistics & numerical data , Female , Male , Adult , Nurse-Patient Relations , Attitude of Health Personnel , Young AdultABSTRACT
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.
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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.
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COVID-19 , Humans , Hospitals , Communication , Databases, Factual , PolicyABSTRACT
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.
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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.
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Education, Nursing, Baccalaureate , Education, Nursing , Hospice and Palliative Care Nursing , Students, Nursing , Humans , Education, Nursing, Baccalaureate/methods , Palliative Care , CurriculumABSTRACT
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.
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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.
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Advance Care Planning , Dementia , Physicians , Humans , Decision Making , Qualitative Research , Dementia/therapy , Dementia/psychologyABSTRACT
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.
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Burnout, Professional , Burnout, Psychological , Humans , Cross-Sectional Studies , Documentation , Electronic Health RecordsABSTRACT
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.
Subject(s)
Advance Care Planning , Health Services Accessibility , Sexual and Gender Minorities , Terminal Care , Adult , Advance Care Planning/standards , Advance Care Planning/statistics & numerical data , Attitude to Health , Female , Gender Identity , Health Care Surveys , Health Services Accessibility/statistics & numerical data , Humans , Male , Middle Aged , Patient-Centered Care/statistics & numerical data , Sexual Behavior , Sexual and Gender Minorities/statistics & numerical data , Terminal Care/statistics & numerical dataABSTRACT
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.
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Advance Care Planning , Medicare , Aged , Communication , Focus Groups , Humans , Patient Outcome Assessment , United StatesABSTRACT
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.
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Advance Care Planning , Medicare , Aged , Fee-for-Service Plans , Humans , Motivation , Qualitative Research , United StatesABSTRACT
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.
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Advance Care Planning , Self-Management , Documentation , Health Personnel , Humans , WorkflowABSTRACT
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.
Subject(s)
Advance Care Planning , Terminal Care , Humans , Black or African American , Hispanic or Latino , White People , Asian , American Indian or Alaska Native , Religion , Communication , Physician-Patient RelationsABSTRACT
BACKGROUND: Transgender and gender-expansive (TGE) adults are twice as likely to smoke cigarettes than cisgender individuals. There is a critical gap in research on effective and culturally sensitive approaches to reduce smoking prevalence among TGE adults. OBJECTIVE: This study aims to qualitatively examine the risk and protective factors of cigarette smoking among TGE adults through real-world exemplars. METHODS: We conducted a digital photovoice study among a purposeful sample of 47 TGE adults aged ≥18 years and currently smoking in the United States (March 2019-April 2020). Participants uploaded photos daily that depicted smoking risk and protective factors they experienced over 21 days on either private Facebook or Instagram groups. Next, we conducted separate focus group discussions to explore the experiences of these factors among a subset of participants from each group. We analyzed participants' photos, captions, and focus group transcripts and generated themes associated with smoking risk and protective factors. RESULTS: We identified 6 major themes of risk and protective factors of smoking among TGE individuals: experience of stress, gender affirmation, health consciousness, social influences, routine behaviors, and environmental cues. We describe and illustrate each theme using exemplar photos and quotes. CONCLUSIONS: The findings of this study will inform future community-engaged research to develop culturally tailored interventions to reduce smoking prevalence among TGE individuals.
Subject(s)
Transgender Persons , Adult , Humans , Prevalence , Qualitative Research , Risk Factors , Smoking , United StatesABSTRACT
BACKGROUND/OBJECTIVES: Evaluations of complex models of care for older adults may benefit from simultaneous assessment of intervention implementation. The STRIDE (Strategies To Reduce Injuries and Develop confidence in Elders) pragmatic trial evaluated the effectiveness of a multifactorial intervention to reduce serious fall injuries in older adults. We conducted multi-level stakeholder interviews to identify barriers to STRIDE intervention implementation and understand efforts taken to mitigate these barriers. DESIGN: Qualitative interviews with key informants. SETTING: Ten clinical trial sites affiliated with practices that provided primary care for persons at increased risk for fall injuries. PARTICIPANTS: Specially trained registered nurses working as Falls Care Managers (FCMs) who delivered the intervention (n = 13 individual interviews), Research Staff who supervised trial implementation locally (n = 10 group interviews, 23 included individuals), and members of Central Project Management and the National Patient Stakeholder Council who oversaw national implementation (n = 2 group interviews, six included individuals). MEASUREMENTS: A semi-structured interview guide derived from the consolidated framework for implementation research (CFIR). RESULTS: We identified eight key barriers to STRIDE intervention implementation. FCMs navigated complex relationships with patients and families while working with Research Staff to implement the intervention in primary care practices with limited clinical space, variable provider buy-in, and significant primary care practice staff and provider turnover. The costs of the intervention to individual patients and medical practices amplified these barriers. Efforts to mitigate these barriers varied depending on the needs and opportunities of each primary care setting. CONCLUSION: The many barriers to implementation and the variability in how stakeholders addressed these locally may have affected the overall STRIDE intervention's effectiveness. Future pragmatic trials should incorporate simultaneous implementation aims to better understand how research interventions translate into clinical care that improves the lives of older adults.
Subject(s)
Accidental Falls/prevention & control , Health Personnel/psychology , Health Plan Implementation/statistics & numerical data , Primary Health Care/statistics & numerical data , Stakeholder Participation/psychology , Adult , Aged , Female , Humans , Male , Middle Aged , Patient Outcome Assessment , Primary Health Care/methods , Program Evaluation , Qualitative ResearchABSTRACT
Importance: Advance care planning (ACP) is intended to maximize the concordance of preferences with end-of-life (EOL) care and is assumed to lead to less intensive use of health care services. The Centers for Medicare & Medicaid Services began reimbursing clinicians for ACP discussions with patients in 2016. Objective: To determine whether billed ACP visits are associated with intensive use of health care services at EOL. Design Setting and Participants: This prospective patient-level cohort analysis of seriously ill patients included Medicare fee-for-service beneficiaries who met criteria for serious illness from January 1 to December 31, 2016, and died from January 1, 2017, to December 31, 2018. Analyses were completed from November 1, 2020, to March 31, 2021. Main Outcomes and Measures: Five measures of EOL health care services used (inpatient admission, emergency department visit, and/or intensive care unit stay within 30 days of death; in-hospital death; and timing of first hospice bill) and a measure of EOL expenditures. Analyses were adjusted for age, race and ethnicity, sex, Charlson Comorbidity Index, Medicare-Medicaid dual eligibility, and expenditure by hospital referral region (high, medium, or low). The primary exposure was receipt of a billed ACP service classified as none, timely (>1 month before death), or late (first ACP visit ≤1 month before death). Results: Of the 955 777 Medicare beneficiaries who met criteria for serious illness in 2016 and died in 2017 or 2018, 522 737 (54.7%) were women, 764 666 (80.0%) were 75 years or older, and 822 684 (86.1%) were non-Hispanic White individuals. Among the study population, 81 131 (8.5%) had a timely ACP visit, and an additional 22 804 (2.4%) had a late ACP visit. After multivariable adjustment, compared with patients without any billed ACP visit, patients with a timely ACP visit experienced significantly less intensive EOL care on 4 of 5 measures, including in-hospital death (adjusted odds ratio [aOR], 0.85; 95% CI, 0.84-0.87), hospital admission (aOR, 0.84; 95% CI, 0.83-0.85), intensive care unit admission (aOR, 0.87; 95% CI, 0.85-0.88), and emergency department visit (OR, 0.83; 95% CI, 0.82-0.84). Only small or insignificant differences in late hospice use or mean total EOL expenditures were noted. Compared with patients without ACP, patients with late ACP experienced more intensive EOL care, including in-hospital death (aOR, 1.22; 95% CI, 1.19-1.26), hospital admission (aOR, 5.28; 95% CI, 5.07-5.50), intensive care unit admission (aOR, 1.57; 95% CI, 1.53-1.62), and emergency department visit (aOR, 3.87; 95% CI, 3.72-4.02). Conclusions and Relevance: In this cohort study of US Medicare beneficiaries, billed ACP services during the EOL course of patients with serious illness were relatively uncommon, but if they occurred before the last month of life, they were associated with less intensive use of EOL services. Further research on the variables affecting hospice use and expenditures in the EOL period and the differential effect of late ACP is recommended to understand the relative role of ACP in achieving goal-concordant care.
Subject(s)
Advance Care Planning , Medicare , Aged , Cohort Studies , Death , Female , Health Expenditures , Hospital Mortality , Humans , Male , Prospective Studies , United StatesABSTRACT
BACKGROUND: Delivering patient-centered care (PCC) is essential to our healthcare system. Patient dignity and respect are foundational elements of PCC. Understanding patients' and their care partner's perspectives on the meaning of dignity and respect within a clinical care environment is critical to achieving our goal of PCC. OBJECTIVE: The aim of the study was to understand how patients and their care partners define, describe, and experience dignity and respect during hospitalization. METHODS: We conducted a qualitative study with 22 patients and care partners hospitalized in high-acuity patient care areas in 1 academic medical center. Data collected from semistructured interviews were analyzed using grounded theory open coding in Atlas Ti software. RESULTS: Our data provide a definition of dignity and respect during hospitalization from the patient and care partner perspective and a conceptual model of the factors needed to enhance patients' and care partners' experience of dignity and respect in the hospital setting. Dignity was felt to be intrinsic to personhood including the recognition of that person's value by others. Respect was characterized as the behavioral or social norms that acknowledge dignity. Determinants of dignity and respect were categorized at the organizational (macro) level and within the microsystem between clinicians, patients, and their care partners. CONCLUSIONS: The definition of dignity and respect and the conceptual model presented here represent an important supplement to our understanding of dignity and respect during hospitalization. Healthcare organizations should focus on the key factors found in this study to create a culture that treats patients with dignity and respect.