Learning health system benefits: Development and initial validation of a framework.

Introduction: Implementation of research findings in clinical practice often is not realized or only partially achieved, and if so, with a significant delay. Learning health systems (LHSs) hold promise to overcome this problem by embedding clinical research and evidence-based best practices into care delivery, enabling innovation and continuous improvement. Implementing an LHS is a complex process that requires participation and resources of a wide range of stakeholders, including healthcare leaders, clinical providers, patients and families, payers, and researchers. Engaging these stakeholders requires communicating clear, tangible value propositions. Existing models identify broad categories of benefits but do not explicate the full range of benefits or ways they can manifest in different organizations. Methods: To develop such a framework, a working group with representatives from six Clinical and Translational Science Award (CTSA) hubs reviewed existing literature on LHS characteristics, models, and goals; solicited expert input; and applied the framework to their local LHS experiences. Results: The Framework of LHS Benefits includes six categories of benefits (quality, safety, equity, patient satisfaction, reputation, and value) relevant for a range of stakeholders and defines key concepts within each benefit. Applying the framework to five LHS case examples indicated preliminary face validity across varied LHS approaches and revealed three dimensions in which the framework is relevant: defining goals of individual LHS projects, facilitating collaboration based on shared values, and establishing guiding tenets of an LHS program or mission. Conclusion: The framework can be used to communicate the value of an LHS to different stakeholders across varied contexts and purposes, and to identify future organizational priorities. Further validation will contribute to the framework's evolution and support its potential to inform the development of tools to evaluate LHS impact.

Establishing evidence-based pharmacologic treatments for neonatal abstinence syndrome: A retrospective case study.

Translation of research discoveries into health impact can take many years, creating delays in improving clinical outcomes. One approach to promoting timely translation is to examine successful cases in order to understand facilitators and strategies for overcoming barriers. We examined the development of evidence-based management for neonatal abstinence syndrome (NAS) at one academic medical center, with a primary focus on pharmacologic treatment. Despite a substantial increase in NAS case incidence starting in the early 2000s, significant sociocultural, policy, and regulatory barriers limited collaborative NAS research. Facilitators for translation encompassed: 1) pursuing research of societal interest, 2) building an effective interdisciplinary team, 3) intentionally linking clinical, research, and advocacy efforts, 4) broad stakeholder engagement across clinical, policy, and research arenas, and 5) leveraging local resources. Challenges included lack of commercially available U.S. Food and Drug Administration approved neonatal drug formulations, legal and regulatory barriers related to off-label and illicit use of opioids, recruitment for a treatment associated with drug withdrawal syndromes, misalignment of research design needs with real-world scenarios, and episodic funding. Benefits of successful translation included improvements in clinical care, reduced healthcare costs related to NAS, and enhanced legislative, policy, and research strategies to support broader neonatal investigations.

Scientific Review Committees as part of institutional review of human participant research: Initial implementation at institutions with Clinical and Translational Science Awards.

INTRODUCTION: Scientific quality and feasibility are part of ethics review by Institutional Review Boards (IRBs). Scientific Review Committees (SRCs) were proposed to facilitate this assessment by the Clinical and Translational Science Award (CTSA) SRC Consensus Group. This study assessed SRC feasibility and impact at CTSA-affiliated academic health centers (AHCs). METHODS: SRC implementation at 10 AHCs was assessed pre/post-intervention using quantitative and qualitative methods. Pre-intervention, four AHCs had no SRC, and six had at least one SRC needing modifications to better align with Consensus Group recommendations. RESULTS: Facilitators of successful SRC implementation included broad-based communication, an external motivator, senior-level support, and committed SRC reviewers. Barriers included limited resources and staffing, variable local mandates, limited SRC authority, lack of anticipated benefit, and operational challenges. Research protocol quality did not differ significantly between study periods, but respondents suggested positive effects. During intervention, median total review duration did not lengthen for the 40% of protocols approved within 3 weeks. For the 60% under review after 3 weeks, review was lengthened primarily due to longer IRB review for SRC-reviewed protocols. Site interviews recommended designing locally effective SRC processes, building buy-in by communication or by mandate, allowing time for planning and sharing best practices, and connecting SRC and IRB procedures. CONCLUSIONS: The CTSA SRC Consensus Group recommendations appear feasible. Although not conclusive in this relatively short initial implementation, sites perceived positive impact by SRCs on study quality. Optimal benefit will require local or federal mandate for implementation, adapting processes to local contexts, and employing SRC stipulations.

Implementing Common Metrics across the NIH Clinical and Translational Science Awards (CTSA) consortium.

The Clinical and Translational Science Award (CTSA) Consortium and the National Center for Advancing Translational Science (NCATS) undertook a Common Metrics Initiative to improve research processes across the national CTSA Consortium. This was implemented by Tufts Clinical and Translational Science Institute at the 64 CTSA academic medical centers. Three metrics were collaboratively developed by NCATS staff, CTSA Consortium teams, and outside consultants for Institutional Review Board Review Duration, Careers in Clinical and Translational Research, and Pilot Award Publications and Subsequent Funding. The implementation program included training on the metric operational guidelines, data collection, data reporting system, and performance improvement framework. The implementation team provided small-group coaching and technical assistance. Collaborative learning sessions, driver diagrams, and change packages were used to disseminate best and promising practices. After 14 weeks, 84% of hubs had produced a value for one metric and about half had produced an initial improvement plan. Overall, hubs reported that the implementation activities facilitated their Common Metrics performance improvement process. Experiences implementing the first three metrics can inform future directions of the Common Metrics Initiative and other research groups implementing standardized metrics and performance improvement processes, potentially including other National Institutes of Health institutes and centers.

Evaluation of initial progress to implement Common Metrics across the NIH Clinical and Translational Science Awards (CTSA) Consortium.

INTRODUCTION: The Clinical and Translational Science Awards (CTSA) Consortium, about 60 National Institutes of Health (NIH)-supported CTSA hubs at academic health care institutions nationwide, is charged with improving the clinical and translational research enterprise. Together with the NIH National Center for Advancing Translational Sciences (NCATS), the Consortium implemented Common Metrics and a shared performance improvement framework. METHODS: Initial implementation across hubs was assessed using quantitative and qualitative methods over a 19-month period. The primary outcome was implementation of three Common Metrics and the performance improvement framework. Challenges and facilitators were elicited. RESULTS: Among 59 hubs with data, all began implementing Common Metrics, but about one-third had completed all activities for three metrics within the study period. The vast majority of hubs computed metric results and undertook activities to understand performance. Differences in completion appeared in developing and carrying out performance improvement plans. Seven key factors affected progress: hub size and resources, hub prior experience with performance management, alignment of local context with needs of the Common Metrics implementation, hub authority in the local institutional structure, hub engagement (including CTSA Principal Investigator involvement), stakeholder engagement, and attending training and coaching. CONCLUSIONS: Implementing Common Metrics and performance improvement in a large network of research-focused organizations proved feasible but required substantial time and resources. Considerable heterogeneity across hubs in data systems, existing processes and personnel, organizational structures, and local priorities of home institutions created disparate experiences across hubs. Future metric-based performance management initiatives across heterogeneous local contexts should anticipate and account for these types of differences.

Pilot test of an accrual Common Metric for the NIH Clinical and Translational Science Awards (CTSA) Consortium: Metric usefulness.

The Common Metrics Initiative aims to develop and field metrics to improve research processes within the national Clinical and Translational Science Award (CTSA) Consortium. A Median Accrual Ratio (MAR) common metric was developed to assess the results of efforts to increase subject accrual into a set of clinical trials within the expected time period. A pilot test of the MAR was undertaken at Tufts Clinical and Translational Science Institute (CTSI) with eight CTSA Consortium hubs. Post-pilot interviews were conducted with 9 CTSA Principal Investigators (PIs) and 23 pilot team members. Over three-quarters (78%) of respondents reported that the MAR could be useful for performance improvement, but also described limitations or concerns. The most commonly cited barrier to MAR use for performance improvement was difficulty in interpreting the single value that is produced. Most respondents were interested in using the MAR to assess recruitment at an individual trial level. Majority of respondents (63%) had mixed opinions about aggregating metric results across the CTSA Consortium for comparison or benchmarking. Collecting data about additional contextual factors, and comparing accrual between subgroups, were cited as potentially helping address concerns about aggregation. Significant challenges remain in ensuring that the MAR can be sufficiently useful for collaborative process improvement. We offer recommendations to potentially improve metric usefulness.

Do common metrics add value? Perspectives from NIH Clinical and Translational Science Awards (CTSA) Consortium hubs.

INTRODUCTION: The Clinical and Translational Science Awards (CTSA) Consortium, a network of academic health care institutions with CTSA hubs, is charged with improving the national clinical and translational research enterprise. The CTSA Consortium and the NIH National Center for Advancing Translational Sciences implemented the Common Metrics Initiative comprised of standardized metrics and a shared performance improvement framework. This article summarizes hubs' perspectives on its value during the initial implementation. METHODS: The value was assessed across 58 hubs. Survey items assessed change in perceived ability to manage performance and advance clinical and translational science. Semi-structured interviews elicited hubs' perspectives on meaningfulness and value-added of the Common Metrics Initiative and hubs' recommendations. RESULTS: Hubs considered their abilities to manage performance to have improved, but there was no change in perceived ability to advance clinical and translational science. The initiative added value by providing a formal structured process, enabling strategic conversations, facilitating improvements in processes, providing an external impetus for improvement, and providing justification for funds invested. Hubs were concerned about the usefulness of the metrics chosen and whether the value-added was sufficient relative to the effort required. Hubs recommended useful benchmarking, disseminating best practices and promoting peer-to-peer learning, and expanding the use of data to inform the initiative. CONCLUSIONS: Implementing Common Metrics and a performance improvement framework yielded concrete short-term benefits, but concerns about usefulness remained, particularly considering the effort required. The Common Metrics Initiative should focus on facilitating cross-hub collaboration around metrics that address high-priority impact areas for individual hubs and the Consortium.

Initial development of a patient-reported outcome measure of experience with cognitive impairment associated with schizophrenia.

Cognitive impairment is a serious, often distressing aspect of schizophrenia that affects patients' day-to-day lives. Although several interview-based instruments exist to assess cognitive functioning, a reliable measure developed based on the experiences of patients facing cognitive difficulties is needed to complement the objective performance-based assessments. The present article describes the initial development of a patient-reported outcome (PRO) measure to assess the subjective experience of cognitive impairment among patients with schizophrenia, the Patient-Reported Experience of Cognitive Impairment in Schizophrenia (PRECIS). The phases of development included the construction of a conceptual model based on the existing knowledge and two sets of qualitative interviews with patients: 1) concept elicitation interviews to ensure face and content validity from the perspective of people with schizophrenia and 2) cognitive debriefing of the initial item pool. Input from experts was elicited throughout the process. The initial conceptual model included seven domains. The results from concept elicitation interviews (n=80) supported these domains but yielded substantive changes to concepts within domains and to terminology. Based on these results, an initial pool of 53 items was developed to reflect the most common descriptions and languages used by the study participants. Cognitive debriefing interviews (n=22) resulted in the removal of 18 items and modification of 22 other items. The remaining 35 items represented 23 concepts within six domains plus two items assessing bother. The draft PRO measure is currently undergoing psychometric testing as a precursor to broad-based clinical and research use.

Physician assessments of drug seeking behavior: A mixed methods study.

BACKGROUND: Pain complaints are common, but clinicians are increasingly concerned about overuse of opioid pain medications. This may lead patients with actual pain to be stigmatized as "drug-seeking," or attempting to obtain medications they do not require medically. We assessed whether patient requests for specific opioid pain medication would lead physicians to classify them as drug-seeking and change management decisions. METHODS AND FINDINGS: Mixed-methods analysis of interviews with 192 office-based primary care physicians after viewing video vignettes depicting patients presenting with back pain. For each presentation physicians were randomly assigned to see either an active request for a specific medication or a more general request for help with pain. The main outcome was assignment by the physician of "drug-seeking" as a potential diagnosis among patients presenting with back pain. Additional outcomes included other actions the physician would take and whether the physician would prescribe the medication requested. A potential diagnosis of drug-seeking behavior was included by 21% of physicians seeing a specific request for oxycodone vs. 3% for a general request for help with back pain(p<0.001). In multivariable models an active request was most strongly associated with a physician-assigned diagnosis of drug-seeking behavior(OR 8.10; 95% CI 2.11-31.15;p = 0.002); other major patient and physician characteristics, including gender and race, did not have strong associations with drug-seeking diagnosis. Physicians described short courses of opioid medications as a strategy for managing patients with pain while avoiding opioid overuse. CONCLUSIONS: When patients make a specific request for opioid pain medication, physicians are far more likely to suspect that they are drug-seeking. Physician suspicion of drug-seeking behavior did not vary by patient characteristics, including gender and race. The strategies used to assess patients further varied widely. These findings indicate a need for the development of better clinical tools to support the evaluation and management of patients presenting with pain.

Intervening to enhance collaboration in translational research: A relational coordination approach.

INTRODUCTION: A core challenge of a multidisciplinary and multi-organizational translational research enterprise such as a Clinical and Translational Research Award (CTSA) is coordinating and integrating the work of individuals, workgroups, and organizations accustomed to working independently and autonomously. Tufts Clinical and Translational Science Institute (CTSI) undertook and studied a multifacted intervention to address this challenge and to create a culture of systems thinking, process awareness, responsive to others' needs, and shared decision-making. INTERVENTION: The intervention, based on relational coordination, included 1) relational interventions, in three staff retreats and a diagnostic survey to provide feedback on the current quality of relational coordination, and 2) structural interventions, in the launching of five new cross-functional teams with regular meeting structures. METHODS: A mixed-methods evaluation yielded quantitative data via two types of team surveys and qualitative data via interviews and meeting observations. RESULTS: The findings suggest that interventions to improve relational coordination are feasible for CTSAs, including good fidelity to the model and staff/physician engagement. Survey and interview data suggest model improvements in coordination and alignment. Further research about their optimal design is warranted.

Educating Parents About Pediatric Research: Children and Clinical Studies Website Qualitative Evaluation.

A gap in information about pediatric clinical trials exists, and parents remain uncertain about what is involved in research studies involving children. We aimed to understand parent perspectives about pediatric clinical research after viewing the online Children and Clinical Studies (CaCS) program. Using a qualitative descriptive study design, we conducted focus groups with parents and phone interviews with physicians. Three themes emerged providing approaches to improve parent's understanding of clinical research by including strategies where parents (a) hear from parents like themselves to learn about pediatric research, (b) receive general clinical research information to complement study-specific details, and (c) are provided more information about the role of healthy child volunteers. Parents found the website a valuable tool that would help them make a decision about what it means to participate in research. This tool can assist parents, providers, and researchers by connecting general information with study-specific information.

GPs' approaches to documenting stigmatising information: a qualitative study.

BACKGROUND: Complete medical documentation is essential for continuity of care, but the competing need to protect patient confidentiality presents an ethical dilemma. This is particularly poignant for GPs because of their central role in facilitating continuity. AIM: To examine how GPs manage medical documentation of stigmatising mental health (MH) and non-MH information. DESIGN AND SETTING: A qualitative sub-study of a factorial experiment with GPs practising in Massachusetts, US. METHOD: Semi-structured interviews (n = 128) were audiorecorded and transcribed verbatim. Transcripts were coded and analysed for themes. RESULTS: GPs expressed difficulties with and inconsistent strategies for documenting stigmatising information. Without being asked directly about stigmatising information, 44 GPs (34%) expressed difficulties documenting it: whether to include clinically relevant but sensitive information, how to word it, and explaining to patients the importance of including it. Additionally, 75 GPs (59%) discussed strategies for managing documentation of stigmatising information. GPs reported four strategies that varied by type of information: to exclude stigmatising information to respect patient confidentiality (MH: 26%, non-MH: 43%); to include but restrict access to information (MH: 13%, non-MH: 25%); to include but neutralise information to minimise potential stigma (MH: 26%, non-MH: 29%); and to include stigmatising information given the potential impact on care (MH: 68%, non-MH: 32%). CONCLUSION: Lack of consistency undermines the potential of medical documentation to efficiently facilitate continuous, coordinated health care because providers cannot be certain how to interpret what is or is not in the chart. A proactive consensus process within the field of primary care would provide much needed guidance for GPs and, ultimately, could enhance quality of care.

Does a Physician's Attitude toward a Patient with Mental Illness Affect Clinical Management of Diabetes? Results from a Mixed-Method Study.

OBJECTIVE: To determine whether physician's attitudes toward patients with comorbid mental illness affect management of a chronic disease. DATA SOURCE: A total of 256 primary care physicians interviewed in 2010. STUDY DESIGN: This randomized factorial experiment entailed physicians observing video vignettes of patient-actors with poorly controlled diabetes. Patients were balanced across age, gender, race, and comorbidity (schizophrenia with bizarre or normal affect, depression, eczema). DATA COLLECTION: Physicians completed structured and semistructured interviews plus chart notes about clinical management and attitudes. PRINCIPAL FINDINGS: Physicians reported more negative attitudes for patients with schizophrenia with bizarre affect (SBA). There were few differences in clinical decisions measured quantitatively or in charting, but qualitative data revealed less trust of patients with SBA as reporters, with more reliance on sources other than engaging the patient in care. Physicians often alerted colleagues about SBA, thereby shaping expectations before interactions occurred. CONCLUSIONS: Results are consistent with common stereotypes about people with serious mental illness. Vignettes did not include intentional indication of unreliable reporting or danger. Reducing health care disparities requires attention to subtle aspects of managing patients--particularly those with atypical affect--as seemingly slight differences could engender disparate patient experiences over time.

Physician styles of decision-making for a complex condition: Type 2 diabetes with co-morbid mental illness.

RATIONALE AIMS AND OBJECTIVES: Variation in physician decisions may reflect personal styles of decision-making, as opposed to singular clinical actions and these styles may be applied differently depending on patient complexity. The objective of this study is to examine clusters of physician decision-making for type 2 diabetes, overall and in the presence of a mental health co-morbidity. METHOD: This randomized balanced factorial experiment presented video vignettes of a "patient" with diagnosed, but uncontrolled type 2 diabetes. "Patients" were systematically varied by age, sex, race and co-morbidity (depression, schizophrenia with normal or bizarre affect, eczema as control). Two hundred and fifty-six primary care physicians, balanced by gender and experience level, completed a structured interview about clinical management. RESULTS: Cluster analysis identified 3 styles of diabetes management. "Minimalists" (n=84) performed fewer exams or tests compared to "middle of the road" physicians (n=84). "Interventionists" (n=88) suggested more medications and referrals. A second cluster analysis, without control for co-morbidities, identified an additional cluster of "information seekers" (n=15) who requested more additional information and referrals. Physicians ranking schizophrenia higher than diabetes on their problem list were more likely "minimalists" and none were "interventionists" or "information seekers". CONCLUSIONS: Variations in clinical management encompass multiple clinical actions and physicians subtly shift these decision-making styles depending on patient co-morbidities. Physicians' practice styles may help explain persistent differences in patient care. Training and continuing education efforts to encourage physicians to implement evidence-based clinical practice should account for general styles of decision-making and for how physicians process complicating comorbidities.

Gendered uncertainty and variation in physicians' decisions for coronary heart disease: the double-edged sword of "atypical symptoms".

Nonmedical factors and diagnostic certainty contribute to variation in clinical decision making, but the process by which this occurs remains unclear. We examine how physicians' interpretations of patient sex-gender affect diagnostic certainty and, in turn, decision making for coronary heart disease. Data are from a factorial experiment of 256 physicians who viewed 1 of 16 video vignettes with different patient-actors presenting the same symptoms of coronary heart disease. Physician participants completed a structured interview and provided a narrative about their decision-making processes. Quantitative analysis showed that diagnostic uncertainty reduces the likelihood that physicians will order tests and medications appropriate for an urgent cardiac condition in particular. Qualitative analysis revealed that a subset of physicians applied knowledge that women have "atypical symptoms" as a generalization, which engendered uncertainty for some. Findings are discussed in relation to social-psychological processes that underlie clinical decision making and the social framing of medical knowledge.

Talking with others about stigmatized health conditions: implications for managing symptoms.

We investigated the influence of social ties on symptom management and help seeking, using urinary symptoms as a case study. Talking with others about these symptoms was common and both facilitated and hindered symptom management and help seeking. In some cases, talking with others resulted in gaining a sense of identification with others suffering the same symptoms, receiving assistance to ease the burden of symptoms, obtaining suggestions to help manage symptoms, and learning information about available treatments. In other cases, talking with others served to normalize symptoms to such an extent that individuals saw no need to manage their symptoms differently.

A qualitative inquiry of patient-reported outcomes: the case of lower urinary tract symptoms.

BACKGROUND: Patient-reported outcomes are a valuable tool for assessing healthcare, particularly for symptom-based conditions that lack definitive physiological measures of treatment efficacy. OBJECTIVE: To explore the value of qualitative methods for understanding and developing patient-reported outcomes of medical care for symptom-based conditions by examining the case of lower urinary tract symptoms. METHODS: Semistructured interviews were conducted with a diverse community sample of 90 respondents who had spoken with a provider about their urinary symptoms. Content and thematic analyses were conducted for the areas of symptom relief, patient adherence, and satisfaction with care according to gender, race or ethnicity, and socioeconomic status. RESULTS: Across social groups, most patients experienced either no symptom relief or partial relief, reported that they adhered to recommendations, and were satisfied with the care received. The primary reason for no symptom relief was not receiving a treatment recommendation. For patients, even partial relief made symptoms more manageable both physically and emotionally. Satisfaction with care was mediated by the quality of the patient-provider relationship as well as expectations other than symptom relief, particularly for patients of low socioeconomic status. DISCUSSION: Patients' assessments of the outcomes of seeking medical care for this symptom-based condition broadened the criteria for quality of care beyond providing a cure. For healthcare providers, this can widen the path for meeting patient needs, even without complete symptom relief. For providers and researchers, as the evidence base expands to include patient reports, the context provided by a qualitative approach can enhance understanding of patients' perspectives and the ability to construct meaningful quantitative measures.

Patients' experiences of seeking health care for lower urinary tract symptoms.

A gap between experiencing symptoms and receiving effective treatment persists for people with lower urinary tract symptoms (LUTS), even for those who seek health care. In order to better understand how patients experience treatment seeking for LUTS, we interviewed a racially diverse sample of 90 men and women with a range of LUTS about their experiences seeking care. Thematic analysis revealed that patients often disclosed urinary symptoms first to primary care providers during a general examination or a visit for another health problem. Patients seek provider assistance typically when symptoms have intensified or are causing worry, and a desire for treatment trumps potential embarrassment; among women patients, feeling comfortable with a provider also is important for disclosing LUTS.

Race and ethnic differences in health beliefs about lower urinary tract symptoms.

BACKGROUND: Health beliefs are an important mediator between the experience of symptoms and health behaviors, and these beliefs can vary by race or ethnicity. OBJECTIVES: The aim of this study was to better understand the gap between experiencing symptoms and not seeking medical care by examining health beliefs about lower urinary tract symptoms across race and ethnic groups. METHOD: Qualitative, semistructured interviews were conducted with 35 Black, Hispanic, and White people who reported at least one urinary symptom but had not spoken with a healthcare provider about the symptom(s). Drawing on Shaw's framework of health behavior and outcomes, a range of beliefs was examined: cause, consequence, continuation, and treatability. Interviews were transcribed, coded, and analyzed for themes according to race or ethnic background. RESULTS: The belief that lower urinary tract symptoms are a typical part of aging and not amenable to medical treatment was most common among White respondents. Black respondents more commonly attributed their symptoms to personal behaviors over which they had control and therefore did not require medical care. Hispanic respondents appeared more often to live with uncertainty about the cause of their symptoms and an accompanying concern about a future health consequence. DISCUSSION: The combination of a range of health beliefs to form a cognitive representation made sense of the behavior of not seeking medical care. The finding that sociocultural differences shaped these cognitive representations underscores the need for cultural competency in patient assessment and education. Results have implications for theories of health behavior and indicate further research with larger samples, additional psychosocial influences, and other symptoms.

Vigilant at the end of life: family advocacy in the nursing home.

BACKGROUND: Increasing numbers of Americans die in nursing homes. Little is known about the roles and experiences of family members of persons who die in nursing homes. METHODS: The authors conducted 54 qualitative telephone interviews of close family or friends of individuals who had spent at least 48 hours in the last month of life in a nursing home. Respondents had earlier participated in a national survey that found 587 of 1578 decedents (37.2%) received end-of-life nursing home care. In qualitative interviews respondents described the last year of life, focusing on the nursing home experience. Interviews were analyzed by a multidisciplinary team to identify key themes of areas of concern. RESULTS: An important interview theme revealed families often felt the need to advocate for their dying relative because of low expectations or experiences with poor quality nursing home care. They noted staff members who did not fully inform them about what to expect in the dying process. Respondents reported burden and gratification in care they themselves provided, which sometimes entailed collaboration with staff. Interviews also identified ways hospice care impacted families, including helping to relieve family burden. CONCLUSIONS: End-of-life advocacy takes on increased urgency when those close to the dying resident have concerns about basic care and do not understand the dying course. Enhancing communication, preparing families at the end of life, and better understanding of hospice are likely to increase family trust in nursing home care, improve the care of dying residents, and help reduce family burden.