Using Family Narrative Reports to Identify Practices for Improving End-of-Life Care Quality.

CONTEXT: Patient experiences should be considered by healthcare systems when implementing care practices to improve quality of end-of-life care. Families and caregivers of recent in-patient decedents may be best positioned to recommend practices for quality improvement. OBJECTIVES: To identify actionable practices that bereaved families highlight as contributing to high quality end-of-life care. METHODS: We conducted qualitative content analysis of narrative responses to the Bereaved Family Surveys Veterans Health Administration inpatient decedents. Out of 5964 completed surveys in 2017, 4604 (77%) contained at least one word in response to the open-ended questions. For feasibility, 1500/4604 responses were randomly selected for analysis. An additional 300 randomly selected responses were analyzed to confirm saturation. RESULTS: Over 23% percent (355/1500) of the initially analyzed narrative responses contained actionable practices. By synthesizing narrative responses to the BFS in a national healthcare system, we identified 98 actionable practices reported by the bereaved families that have potential for implementation in QI efforts. Specifically, we identified 67 end-of-life practices and 31 practices in patient-centered care domains of physical environment, food, staffing, coordination, technology and transportation. The 67 cluster into domains including respectful care and communication, emotional and spiritual support, death benefits, symptom management. Sorting these practices by target levels for organizational change illuminated opportunities for implementation. CONCLUSION: Narrative responses from bereaved family members can yield approaches for systematic quality improvement. These approaches can serve as a menu in diverse contexts looking for approaches to improve patient quality of death in in-patient settings.

Empowering the Latino Community Related to Palliative Care and Chronic Disease Management through Promotores de Salud (Community Health Workers).

Background: Latinos are the largest minority group in the United States and when compared with non-Latino whites suffer from higher rates of certain chronic diseases. Latino community health workers (promotores de salud) are successful in improving the health of their communities. However, evidence of their effectiveness in increasing awareness of palliative care (PC) is limited. Objective: To evaluate the feasibility of applying a promotores de salud model to improve PC awareness among Latinos within the context of chronic disease management. Methods: Bilingual promotores from Familias en Acción trained 76 southern California promotores on PC and chronic disease management. Promotores agreed to disseminate the information learned to 10+ Latino community members. The strengths of the curriculum and the community's needs were identified during phone interviews six months post-training. Results: In 406 diverse settings, 69 promotores trained 2734 community members. Interviews with promotores at follow-up established four themes: (1) holistic health in chronic disease management; (2) communication with doctors; (3) shared decision making, patients' rights, and control; and (4) need for PC information (awareness, access, and support groups). Conclusion:Promotores proved effective at disseminating information related to PC within chronic disease management to Latino community members. Future training should include information on support groups and where caregivers can seek help while caring for those with a terminal disease.

Developing Unique Insights From Narrative Responses to Bereaved Family Surveys.

CONTEXT: Although bereaved family surveys (BFS) are routinely used quantitatively for quality assessment, open-ended and narrative responses are rarely systematically analyzed. Analysis of narrative responses may identify opportunities for improving end-of-life (EOL) care delivery. OBJECTIVES: To highlight the value of routine and systematic analysis of narrative responses and to thematically summarize narrative responses to the BFS of Veterans Affairs. METHODS: We analyzed more than 4600 open-ended responses to the BFS for all 2017 inpatient decedents across Veterans Affairs facilities. We used a descriptive qualitative approach to identify major themes. RESULTS: Thematic findings clustered into three domains: patient needs, family needs, and facility and organizational characteristics. Patient needs include maintenance of veteran's hygiene, appropriately prescribing medications, adhering to patient wishes, physical presence in patient's final hours, and spiritual and religious care at EOL. Family and caregiver needs included enhanced communication with the patient's care team, assistance with administrative and logistical challenges after death, emotional support, and displays of respect and gratitude for the patient's life. Facility and organizational characteristics included care team coordination, optimal staffing, the importance of nonclinical staff to care, and optimizing facilities to be welcoming, equipped for individuals with disabilities, and able to provide high-quality food. CONCLUSION: Systematic analysis of narrative survey data yields unique findings not routinely available through quantitative data collection and analysis. Organizations may benefit from the collection and regular analysis of narrative survey responses, which facilitate identification of needed improvements in palliative and EOL care that may improve the overall experiences for patients and families.

Using a Quality Improvement Model to Implement Distress Screening in a Community Cancer Setting.

BACKGROUND: Quality cancer care includes routine screening for psychosocial distress. This quality improvement project focused on the implementation of distress screening at a licensed affiliate of Cancer Support Community, a community-based non-profit organization that provides professionally led cancer support. METHODS: An advanced practice oncology nurse assisted the staff in implementing and evaluating the process of distress screening. CancerSupportSource (CSS), a validated web-based distress screening program developed by Cancer Support Community for use in community cancer settings, was employed to screen for distress, identify potential resources, and improve in-house and community referrals. For purposes of this quality improvement project, CSS was administered in interview format by staff. The Plan-Do-Study-Act (PDSA) quality improvement approach was used to implement CSS. RESULTS: To implement the practice of distress screening, 21 patient participants were initially screened and evaluated for distress, including risk for clinically significant levels of depression, using CSS. The tool identified participant concerns and flagged thirteen persons as at risk for depression. After implementation and evaluation of distress screening using PDSA, in a year, 51 participants were screened. Participants stated that distress screening allowed for discussion of intimate questions that may not have otherwise occurred in an intake interview. CONCLUSION: It was demonstrated that CSS identified psychosocial and practical needs, facilitating the referral process and identification of community resources. Application of the PDSA model was an effective quality improvement model that can be used for the implementation and sustainability of distress screening across settings.

Pilot Implementation of a Low-Literacy Zone Tool for Heart Failure Self-management.

Heart failure affects 6.5 million Americans, with 1 million hospitalizations annually, a 22% readmission rate, and $31 billion in health care costs. Palliative care decreases symptom burden, readmissions, and costs. Many elderly patients have difficulty recognizing and reporting heart failure symptoms to their providers in a timely manner. Self-management tools with color-coded zones (green = "all clear," yellow = "caution," red = "take action") help patients recognize and respond to heart failure symptoms and reduce readmissions. The purpose of this quality improvement project was to develop, implement, and evaluate a low-literacy zone tool for heart failure self-management with home-based palliative care patients. An interdisciplinary palliative care team developed this zone tool. Health literacy was prescreened with the Newest Vital Sign instrument. Nurses provided the zone tool to patients and caregivers and instructed them in use of this tool for daily self-monitoring. In postimplementation surveys, participants rated the zone tool as easy to understand and helpful in recognizing and reporting symptoms. This project demonstrated feasibility of a new zone tool for heart failure self-management, resulting in a practice change for this home-based palliative care program. The interdisciplinary team eventually developed similar zone tools for cancer, cirrhosis, chronic obstructive pulmonary disease, dementia, and frailty self-management.

Pain Screening in the Older Adult With Delirium.

BACKGROUND: In patients with cognitive impairments who are unable to self-report pain, nurses must rely on behavioral observation tools to assess and manage pain. Although frequently employed in medical-surgical units, evidence supporting the psychometric efficacy of the Pain in Advanced Dementia (PAINAD) for pain screening in older adults with delirium is lacking. AIM: To examine the psychometrics of the PAINAD for older adults with delirium in medical-surgical settings. DESIGN: A descriptive repeated measures design. SETTING: Medical-surgical units in an urban tertiary care hospital. PARTICIPANTS: Sixty-eight older adults with delirium. METHODS: Patients with delirium unable to self-report pain were screened by two data collectors with the PAINAD and the Critical Care Pain Observation Tool (CPOT). Patients with a PAINAD score ≥3 or a CPOT score ≥2 received a pain intervention. Pain assessments were repeated 30 minutes post baseline or pain intervention. RESULTS: Patients were predominately female (58.8%) with dementia (71%). Thirty-nine patients screened positive for pain and received a pain intervention. PAINAD reliability was strong (Cronbach's α = 0.81-0.87; interrater intraclass coefficients [ICC] = 0.91-0.94; test-retest ICC = 0.76-0.77). Construct validity was supported by a statistically significant interaction effect between time (baseline versus follow-up) and condition (pain intervention versus no pain group; Rater 1: F(1,66) = 8.31, p = 0.005, ηp2 = 0.11; Rater 2: F(1,66) = 8.22, p = 0.006, ηp2 = 0.11. CONCLUSIONS: The PAINAD is a reliable and valid tool for pain screening for older adults with delirium in medical-surgical settings. CLINICAL IMPLICATIONS: Pain and delirium frequently co-occur in the older adult population. Best practices require a holistic assessment for contributing pain and non-pain factors in patients exhibiting distress.

The Patient-Centered Medical Home Model and Diabetes Outcomes: An Integrative Literature Review.

The purpose of this integrative review was to synthesize the existing evidence on diabetes care within a Patient-Centered Medical Home (PCMH) model to evaluate its effectiveness on quality outcomes. Literature published in English between 2005 and 2015 was searched using thefollowing keywords: PCMH and diabetes, comprehensive care, care coordination, patient-centered care, quality and safety, and accessible care. The following databases were searched: Cumulative Index to Nursing and Allied Health Literature (CINAHL), PubMed, Cochrane Review, Academic Premier (EBSCO), and Psych INFO. The search yielded 96 articles; 11 were selectedfor review. The effects of the PCMH model on diabetes outcomes varied. The heterogeneity of the research designs, practice settings, and quality outcomes limited the generalizability of the findings. The evidence related to diabetes type 2 quality outcomes in a PCMH model is limited yet encouraging. However, future studies should consider longitudinal designs, where outcomes can be observed over a period of time.

Populations and Interventions for Palliative and End-of-Life Care: A Systematic Review.

IMPORTANCE: Evidence supports palliative care effectiveness. Given workforce constraints and the costs of new services, payers and providers need help to prioritize their investments. They need to know which patients to target, which personnel to hire, and which services best improve outcomes. OBJECTIVE: To inform how payers and providers should identify patients with "advanced illness" and the specific interventions they should implement, we reviewed the evidence to identify (1) individuals appropriate for palliative care and (2) elements of health service interventions (personnel involved, use of multidisciplinary teams, and settings of care) effective in achieving better outcomes for patients, caregivers, and the healthcare system. EVIDENCE REVIEW: Systematic searches of MEDLINE, EMBASE, PsycINFO, Web of Science, and Cochrane Database of Systematic Reviews databases (1/1/2001-1/8/2015). RESULTS: Randomized controlled trials (124) met inclusion criteria. The majority of studies in cancer (49%, 38 of 77 studies) demonstrated statistically significant patient or caregiver outcomes (e.g., p < 0.05), as did those in congestive heart failure (CHF) (62%, 13 of 21), chronic obstructive pulmonary disease (COPD; 58%, 11 of 19), and dementia (60%, 15 of 25). Most prognostic criteria used clinicians' judgment (73%, 22 of 30). Most interventions included a nurse (70%, 69 of 98), and many were nurse-only (39%, 27 of 69). Social workers were well represented, and home-based approaches were common (56%, 70 of 124). Home interventions with visits were more effective than those without (64%, 28 of 44; vs. 46%, 12 of 26). Interventions improved communication and care planning (70%, 12 of 18), psychosocial health (36%, 12 of 33, for depressive symptoms; 41%, 9 of 22, for anxiety), and patient (40%, 8 of 20) and caregiver experiences (63%, 5 of 8). Many interventions reduced hospital use (65%, 11 of 17), but most other economic outcomes, including costs, were poorly characterized. Palliative care teams did not reliably lower healthcare costs (20%, 2 of 10). CONCLUSIONS: Palliative care improves cancer, CHF, COPD, and dementia outcomes. Effective models include nurses, social workers, and home-based components, and a focus on communication, psychosocial support, and the patient or caregiver experience. High-quality research on intervention costs and cost outcomes in palliative care is limited.

Early malnutrition screening and low cost protein supplementation in elderly patients admitted to a skilled nursing facility.

BACKGROUND: Malnutrition among skilled nursing facility (SNF) patients can lead to hospital readmissions and multiple complications. PURPOSE: To evaluate the effect of an existing malnutrition screening and management program on prealbumin levels of patients in skilled nursing facilities. METHODS: A retrospective design was used to evaluate baseline admission data including a prealbumin level. Patients with malnutrition received an oral protein supplement according to protocol. A comparison prealbumin level was obtained at 30days. RESULTS: Nearly half of the patients were severely malnourished on admission. Patients receiving the prescribed protocol had significantly increased prealbumin levels at 30days than those patients that did not receive the protocol as prescribed. CONCLUSION: A prealbumin level upon admission at a SNF could represent a reliable tool to evaluate malnutrition. Initiation of an early malnutrition screening and protein supplement program in this setting is essential to identifying and treating at-risk patients before complications occur.

Palliative care in neonatal intensive care, effects on parent stress and satisfaction: a feasibility study.

CONTEXT: Approximately 1 in 10 infants require neonatal intensive care unit (NICU) hospitalization, which causes parental stress. Palliative care (PC) provides an opportunity to alleviate suffering and stress. OBJECTIVES: This study examines the effects of PC on NICU parent stress and satisfaction. METHODS: A prospective cohort design compares stress and satisfaction among families receiving or not receiving PC. RESULTS: No significant differences in stress scores were found (P = .27-1.00). Palliative care parents (100%) were more likely to report being "extremely satisfied" with care than usual-care parents (50%). CONCLUSION: This study supports the feasibility of evaluating NICU PC services. Infants referred for PC typically have higher morbidity/mortality; therefore, higher parental stress scores may be expected. Stress levels were similar in both cohorts, thus PC did not increase stress and may decrease PC parent stress.

Developing an informatics tool to advance supportive care: the Veterans Health Care Administration Palliative Care National Clinical Template.

BACKGROUND: Increasing emphasis in performance-based payment, public reporting, and quality improvement (QI) has led to widespread interest in measuring and improving the quality of care. By 2014, hospice programs will be required to report quality data to the federal government or incur financial penalties. With this increased interest in quality reporting comes an opportunity to develop informatics tools to capture data that reflect the complex practices involved in palliative care (PC). Therefore, there is a need to disseminate information on developing tools that facilitate capturing data and fostering improved performance. The Veterans Health Care Administration, a national leader in health information technology (HIT) and PC, established the Quality Improvement Resource Center (QuIRC) to develop innovative HIT tools to standardize and improve PC practices throughout the 153 Department of Veterans Affairs (VA) medical centers nationwide. OBJECTIVE: The aim of the paper is to describe the development of the Palliative Care-National Clinical Template (PC-NCT) for documenting initial PC consults. RESULTS: Domains of quality of life provided the foundation for this template. Principles of user-centered informatics design guided development activities. A national consensus panel of PC experts prioritized quality indicators as targets for QI. An interdisciplinary team of PC providers identified desired aspects of template functionality. QuIRC balanced PC providers' desired aspects of functionality against the feasibility within the VA HIT system. Formal pilot and usability testing contributed to numerous iterations of the PC-NCT currently piloted in five geographically distributed sites. CONCLUSION: This paper presents a robust approach to developing an informatics tool for PC practice. Data collected via the PC-NCT will bring variations in current practice into view and assist in directing resources at "important targets" for QI. Although the development of HIT tools to quantify PC practice is complex, there is enormous potential to improve the quality of care for patients and families facing serious illnesses.

Provider approaches to palliative dyspnea assessment: implications for informatics-based clinical tools.

AIM: To understand provider practices around dyspnea assessment to inform the development of an electronic medical record (EMR)-based dyspnea assessment module in an inpatient palliative care consultation template. DESIGN: Qualitative analysis of palliative care provider interviews. RESULTS: Three themes emerged: (1) integration of patient self-report of breathlessness with a clinical observation of dyspnea; (2) identification of patients for dyspnea assessment based on perceived patient need; and (3) variability in preferences for and use of existing severity scales for dyspnea. CONCLUSIONS: The assessment approaches described by providers underscore the challenge of developing an informatics tool that supports the natural clinical experience and facilitates standardized care. The complexity of the dyspnea assessment process and variation in provider practices necessitate a level of flexibility and choice to be built into a computer-based tool.

Prescription sharing, alcohol use, and street drug use to manage pain among veterans.

CONTEXT: Efforts to promote awareness and management of chronic pain have been accompanied by a troubling increase in prescription medication abuse. At the same time, some patients may misuse substances in an effort to manage chronic pain. OBJECTIVES: This study examines self-reported substance misuse for pain management among veterans and identifies the contributing factors. METHODS: We analyzed cross-sectional data from the Help Veterans Experience Less Pain study. RESULTS: Of 343 veterans, 35.3% reported an aberrant pain management behavior (24% reported using alcohol, 11.7% reported using street drugs, and 16.3% reported sharing prescriptions to manage pain). Poorer mental health, younger age, substance use disorders (SUDs), number of nonpain symptoms, and greater pain severity and interference were associated with aberrant pain management behaviors. In multivariate analysis, SUDs (odds ratio [OR]: 3.9, 95% confidence interval [CI]: 2.3-6.7, P<0.000) and poorer mental health (OR: 2.3, 95% CI: 1.3-4.3, P=0.006) were associated with using alcohol or street drugs to manage pain; SUDs (OR: 2.4, 95% CI: 1.3-4.4, P=0.006) and pain interference (OR: 1.1, 95% CI: 1.0-1.2, P=0.047) were associated with prescription sharing; and SUDs (OR: 3.6, 95% CI: 2.2-6.1, P<0.000) and number of nonpain symptoms (OR: 6.5, 95% CI: 1.2-35.4, P=0.031) were associated with any aberrant pain management behavior. CONCLUSION: Veterans with a history of SUDs, greater pain interference, more nonpain symptoms, and mental health concerns should be carefully managed to deter substance misuse for pain management.

Nursing staff, patient, and environmental factors associated with accurate pain assessment.

CONTEXT: Although pain ranks highly among reasons for seeking care, routine pain assessment is often inaccurate. OBJECTIVES: This study evaluated factors associated with nurses (e.g., registered) and other nursing support staff (e.g., licensed vocational nurses and health technicians) discordance with patients in estimates of pain in a health system where routine pain screening using a 0-10 numeric rating scale (NRS) is mandated. METHODS: This was a cross-sectional, visit-based, cohort study that included surveys of clinic outpatients (n=465) and nursing staff (n=94) who screened for pain as part of routine vital sign measurement during intake. These data were supplemented by chart review. We compared patient pain levels documented by the nursing staff (N-NRS) with those reported by the patient during the study survey (S-NRS). RESULTS: Pain underestimation (N-NRSS-NRS) in 7% of the cases. Nursing staff used informal pain-screening techniques that did not follow established NRS protocols in half of the encounters. Pain underestimation was positively associated with more years of nursing staff work experience and patient anxiety or post-traumatic stress disorder and negatively associated with better patient-reported health status. Pain overestimation was positively associated with nursing staff's use of the full NRS protocol and with a distracting environment in which patient vitals were taken. CONCLUSION: Despite a long-standing mandate, pain-screening implementation falls short, and informal screening is common.

Addressing patients' concerns about pain management and addiction risks.

Fear of engendering addiction is frequently reported as both a provider and a patient barrier to effective pain management. In this study, a clinical scenario ascertained nursing staff members' usual practice in addressing addiction fears for patients with concerns about the addictive potential of pain medication. One hundred forty-five Veterans Health Administration nursing staff members from eight ambulatory care sites were queried to identify variables associated with proclivity to address patient fears about addiction risks in a population where pain is prevalent and the risk for substance abuse is high. Regarding addressing addiction concerns, 66% of nursing staff were very likely, 16% somewhat likely, 9% unsure, 6% somewhat unlikely, and 2% very unlikely to take action. Health technicians were less likely to address addiction concerns than registered or licensed vocational nurses (odds ratio [OR] 0.116; p=.004). Nursing staff with more years' experience (OR 1.070; p=.005) and higher levels of self-efficacy/confidence (OR 1.380; p=.001) were more likely to engage in discussions related to addiction risks. Targeted efforts to improve pain management activities should focus on retaining experienced nursing staff in initial assessment positions and improving the skills and confidence of less experienced and less skilled staff.

Does screening for pain correspond to high quality care for veterans?

BACKGROUND: Routine numeric screening for pain is widely recommended, but its association with overall quality of pain care is unclear. OBJECTIVE: To assess adherence to measures of pain management quality and identify associated patient and provider factors. DESIGN: A cross-sectional visit-based study. PARTICIPANTS: One hundred and forty adult VA outpatient primary care clinic patients reporting a numeric rating scale (NRS) of moderate to severe pain (four or more on a zero to ten scale). Seventy-seven providers completed a baseline survey regarding general pain management attitudes and a post-visit survey regarding management of 112 participating patients. MEASUREMENT AND MAIN RESULTS: We used chart review to determine adherence to four validated process quality indicators (QIs) including noting pain presence, pain character, and pain control, and intensifying pharmacological intervention. The average NRS was 6.7. Seventy-three percent of charts noted the presence of pain, 13.9% the character, 23.6% the degree of control, and 15.3% increased pain medication prescription. Charts were more likely to include documentation of pain presence if providers agreed that "patients want me to ask about pain" and "pain can have negative consequences on patient's functioning". Charts were more likely to document character of pain if providers agreed that "patients are able to rate their pain". Patients with musculoskeletal pain were less likely to have chart documentation of character of pain. CONCLUSIONS: Despite routine pain screening in VA, providers seldom documented elements considered important to evaluation and treatment of pain. Improving pain care may require attention to all aspects of pain management, not just screening.

Exploring alternative approaches to routine outpatient pain screening.

OBJECTIVE: To evaluate potential alternatives to the numeric rating scale (NRS) for routine pain screening. DESIGN: Cross-sectional. SETTING: Nineteen Veterans Affairs outpatient clinics in Southern California at two hospitals and six community sites. PATIENTS: Five hundred twenty-eight veterans from primary care, cardiology, and oncology clinics sampled in proportion to the total number of visits made to each clinic during the previous year. METHODS: Veterans were approached following clinic visits to complete researcher-administered surveys about their clinic experience. Using the Brief Pain Inventory (BPI) interference scale of > or =5 as a reference standard for important unrelieved pain, we evaluated potential alternative pain screening items and item combinations by analyzing sensitivity and specificity, area under the receiver operating curve (AUC), and likelihood ratios. RESULTS: Of the veterans, 43.6% had unrelieved pain as measured by the reference standard. Approximately half had painful musculoskeletal diagnoses and one-third had comorbid mental health or substance use disorders. The fifth vital sign detected pain less accurately than did an NRS with a 1-week timeframe and an item assessing pain-related bother over the past week. AUCs were 0.79, 0.86, and 0.86, respectively. A sequential approach combining the pain-related bother and NRS with a 1-week timeframe items had good discriminatory ability. CONCLUSIONS: Alternative single or combined pain screening strategies assessing pain-related bother may improve routine pain detection.

Heart failure: the hidden problem of pain.

Although dyspnea and fatigue are hallmark symptoms of heart failure (HF), the burden of pain may be underrecognized. This study assessed pain in HF and identified contributing factors. As part of a multicenter study, 96 veterans with HF (96% male, 67+/-11 years) completed measures of symptoms, pain (Brief Pain Inventory [BPI]), functional status (Functional Morbidity Index), and psychological state (Patient Health Questionnaire-2 and Generalized Anxiety Disorder-2). Single items from the BPI interference and the quality of life-end of life measured social and spiritual well-being. Demographic and clinical variables were obtained by chart audit. Correlation and linear regression models evaluated physical, emotional, social, and spiritual factors associated with pain. Fifty-three (55.2%) HF patients reported pain, with a majority (36 [37.5%]) rating their pain as moderate to severe (pain>or=4/10). The presence of pain was reported more frequently than dyspnea (67 [71.3%] vs. 58 [61.7%]). Age (P=0.02), psychological (depression: P=0.002; anxiety: P=0.001), social (P<0.001), spiritual (P=0.010), and physical (health status: P=0.001; symptom frequency: P=0.000; functional status: P=0.002) well-being were correlated with pain severity. In the resulting model, 38% of the variance in pain severity was explained (P<0.001); interference with relations (P<0.001) and symptom number (P=0.007) contributed to pain severity. The association of physical, psychological, social, and spiritual domains with pain suggests that multidisciplinary interventions are needed to address the complex nature of pain in HF.

Caring for special populations: total pain theory in advanced heart failure: applications to research and practice.

TOPIC: Total pain theory. PURPOSE: Describe total pain theory and apply it to research and practice in advanced heart failure (HF). SOURCE OF INFORMATION: Total pain theory provides a holistic perspective for improving care, especially at the end of life. In advanced HF, multiple domains of well-being known to influence pain perception are adversely affected by declining health and increasing frailty. A conceptual framework is suggested which addresses domains of well-being identified by total pain theory. CONCLUSION: By applying total pain theory, providers may be more effective in mitigating the suffering of individuals with progressive, life-limiting diseases.