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Background: Patients with serious respiratory illness and their caregivers suffer considerable burdens, and palliative care is a fundamental right for anyone who needs it. However, the overwhelming majority of patients do not receive timely palliative care before the end of life, despite robust evidence for improved outcomes. Goals: This policy statement by the American Thoracic Society (ATS) and partnering societies advocates for improved integration of high-quality palliative care early in the care continuum for patients with serious respiratory illness and their caregivers and provides clinicians and policymakers with a framework to accomplish this. Methods: An international and interprofessional expert committee, including patients and caregivers, achieved consensus across a diverse working group representing pulmonary-critical care, palliative care, bioethics, health law and policy, geriatrics, nursing, physiotherapy, social work, pharmacy, patient advocacy, psychology, and sociology. Results: The committee developed fundamental values, principles, and policy recommendations for integrating palliative care in serious respiratory illness care across seven domains: 1 ) delivery models, 2 ) comprehensive symptom assessment and management, 3 ) advance care planning and goals of care discussions, 4 ) caregiver support, 5 ) health disparities, 6 ) mass casualty events and emergency preparedness, and 7 ) research priorities. The recommendations encourage timely integration of palliative care, promote innovative primary and secondary or specialist palliative care delivery models, and advocate for research and policy initiatives to improve the availability and quality of palliative care for patients and their caregivers. Conclusions: This multisociety policy statement establishes a framework for early palliative care in serious respiratory illness and provides guidance for pulmonary-critical care clinicians and policymakers for its proactive integration.

Background: Most patients living with serious illness value spending time at home. Emerging data suggest that days alive and at home (DAH) may be a useful metric, however more research is needed. We aimed to assess the concurrent validity of DAH with respect to clinically significant changes in patient- and caregiver-reported outcomes (PROs)., Methods: We drew data from a study that compared two models of home-based palliative care among seriously ill patients and their caregivers in two Kaiser Permanente regions (Southern California and Northwest). We included participants aged 18 years or older (n = 3533) and corresponding caregivers (n = 463). We categorized patients and caregivers into three groups based on whether symptom burden (Edmonton Symptom Assessment System, ESAS) or caregiving preparedness (Preparedness for Caregiving Scale, CPS) showed improvements, deterioration, or no change from baseline to 1 month later. We measured DAH across four time windows: 30, 60, 90, and 180 days, after admission to home palliative care. We used two-way ANOVA to compare DAH across the PRO groups., Results: Adjusted pairwise comparisons showed that DAH was highest for patients whose ESAS scores improved or did not change compared with those with worsening symptoms. Although the mean differences ranged from less than a day to about 3 weeks, none exceeded 0.3 standard deviations. ESAS change scores had weak negative correlations (r = -0.11 to -0.21) with DAH measures. CPS change scores also showed weak, positive correlations (r = 0.23-0.24) with DAH measures., Conclusion: DAH measures are associated, albeit weakly, with clinically important improvement or maintenance of patient symptom burden in a diverse, seriously ill population., (© 2021 The American Geriatrics Society.)

Background: Serious illness often causes financial hardship for patients and families. Home-based palliative care (HBPC) may partly address this., Objective: Describe the prevalence and characteristics of patients and family caregivers with high financial distress at HBPC admission and examine the relationship between financial distress and patient and caregiver outcomes., Design, Settings, and Participants: Data for this cohort study were drawn from a pragmatic comparative-effectiveness trial testing two models of HBPC in Kaiser Permanente. We included 779 patients and 438 caregivers from January 2019 to January 2020., Measurements: Financial distress at admission to HBPC was measured using a global question (0-10-point scale: none=0; mild=1-5; moderate/severe=6+). Patient- (Edmonton Symptom Assessment Scale, distress thermometer, PROMIS-10) and caregiver (Preparedness for Caregiving, Zarit-12 Burden, PROMIS-10)-reported outcomes were measured at baseline and 1 month. Hospital utilization was captured using electronic medical records and claims. Mixed-effects adjusted models assessed survey measures and a proportional hazard competing risk model assessed hospital utilization., Results: Half of the patients reported some level of financial distress with younger patients more likely to have moderate/severe financial distress. Patients with moderate/severe financial distress at HBPC admission reported worse symptoms, general distress, and quality of life (QoL), and caregivers reported worse preparedness, burden, and QoL (all, p<.001). Compared to patients with no financial distress, moderate/severe financial distress patients had more social work contacts, improved symptom burden at 1 month (ESAS total score: -4.39; 95% CI: -7.61, -1.17; p<.01), and no increase in hospital-based utilization (adjusted hazard ratio: 1.11; 95% CI: 0.87-1.40; p=.41); their caregivers had improved PROMIS-10 mental scores (+2.68; 95% CI: 0.20, 5.16; p=.03). No other group differences were evident in the caregiver preparedness, burden, and physical QoL change scores., Conclusion: These findings highlight the importance and need for routine assessments of financial distress and for provision of social supports required to help families receiving palliative care services., (© 2021. The Author(s) under exclusive licence to Society of General Internal Medicine.)

Background: The research enterprise has embraced patient centeredness in embedded efficient pragmatic trials, but limited data exist on using patient-reported outcomes (PROs) collected as part of usual clinical care for research. Objectives: We sought to assess the performance of different assessment methods for obtaining PROs in a pragmatic cluster randomized trial (HomePal study) designed to compare two models of home-based palliative care (HBPC). Design: Descriptive analytics, comparative trends, and psychometric performance of PROs collected in the HomePal study; measures included Edmonton Symptom Assessment System (ESAS), PROMIS-10, and others administered at baseline, 1, and 6 months. Setting/Subjects: HomePal was conducted in the Southern California and Northwest Kaiser Permanente regions in the United States; subjects were patients receiving HBPC and their caregivers. Measurements: We specifically compared ESAS obtained by research staff with those obtained by clinical HBPC nurses at the time of HBPC enrollment. We also compared ESAS completed by patients versus if done or assisted by a caregiver (proxy). Results: We enrolled 3533 patients and had 2205 ESAS measurements that met the criteria for analysis at baseline and 1447 at the one-month follow-up assessment. Research staff-obtained ESAS at admission to HBPC was higher overall (indicating more symptoms) than the clinically collected measure whether symptoms were reported by patients (31.7 ± 15.4 vs. 26.0 ± 13.4) or by proxies (36.9 ± 15.6 vs. 26.5 ± 13.5). These differences persisted with follow-up ESAS measures. Conclusions: We identified significant variability in PRO responses between different surveyors and whether proxy interaction was needed suggesting complex issues around PRO measure performance for pragmatic embedded trials. ClinicalTrials.gov Identifier: NCT03694431.

Objectives: The current evidence base regarding the effectiveness of home-based palliative care (HomePal) on outcomes of importance to multiple stakeholders remains limited. The purpose of this study was to compare end-of-life care in decedents who received HomePal with two cohorts that either received hospice only (HO) or did not receive HomePal or hospice (No HomePal-HO)., Design: Retrospective cohorts from an ongoing study of care transition from hospital to home. Data were collected from 2011 to 2016., Setting: Kaiser Permanente Southern California., Participants: Decedents 65 and older who received HomePal (n = 7177) after a hospitalization and two comparison cohorts (HO only = 25 102; No HomePal-HO = 22 472)., Measurements: Utilization data were extracted from administrative, clinical, and claims databases, and death data were obtained from state and national indices. Days at home was calculated as days not spent in the hospital or in a skilled nursing facility (SNF)., Results: Patients who received HomePal were enrolled for a median of 43 days and had comparable length of stay on hospice as patients who enrolled only in hospice (median days = 13 vs 12). Deaths at home were comparable between HomePal and HO (59% vs 60%) and were higher compared with No HomePal-HO (16%). For patients who survived at least 6 months after HomePal admission (n = 2289), the mean number of days at home in the last 6 months of life was 163 ± 30 vs 161 ± 30 (HO) vs 149 ± 40 (No HomePal-HO). Similar trends were also noted for the last 30 days of life, 25 ± 8 (HomePal, n = 5516), 24 ± 8 (HO), and 18 ± 11 (No HomePal-HO); HomePal patients had a significantly lower risk of hospitalizations (relative risk [RR] = .58-.87) and SNF stays (RR = .32-.77) compared with both HO and No HomePal-HO patients., Conclusion: Earlier comprehensive palliative care in patients' home in place of or preceding hospice is associated with fewer hospitalizations and SNF stays and more time at home in the final 6 months of life. J Am Geriatr Soc, 2019., (© 2019 The American Geriatrics Society.)

Rationale: To understand how well palliative care is provided in the intensive care unit (ICU) and to direct improvements, measurement of the quality of care delivered is requisite., Objectives: To measure the quality of palliative care delivered in the ICU, using chart review-derived process quality measures of palliative care in critically ill patients, and to compare these measures with family and nursing perspectives on the quality of care provided., Methods: We developed and operationalized a comprehensive quality evaluation measure set from previously endorsed palliative care measure statements, using a rigorous multidisciplinary Delphi process focused on optimizing the validity and feasibility of chart review-derived metrics. Fourteen process measures assessed the quality of care delivered across established domains of palliative care for the ICU. We assessed the quality of care for ICU patients with ICU length of stay exceeding 2 days from three perspectives: medical record reviews, family satisfaction reports, and nurse ratings from those providing care in the ICU., Measurements and Main Results: We evaluated the care over a 7-month period of 150 patients (mean age, 63.9 yr [SD 13.4], average ICU length of stay, 7.5 d [SD 7.2]). Overall, ICU patients received 53.1% of recommended palliative care. The Family Satisfaction with Care in the Intensive Care Unit total scores from 136 family members (response rate, 91%) were high, 85.7 (SE 2.0) and 86.0 (SE 1.6), at the two sites but not correlated to measured quality delivered. Nurses rated the quality of care higher than medical record review (mean, 77.3% [SD 13.4]; n = 135) and similarly correlation with chart based process measures was poor., Conclusions: Delivering high-quality palliative care in the ICU requires assessing key patient-centered domains. However, assessments from different perspectives do not always agree with technical quality of care as measured through chart-based metrics. We found deficits across seven domains of technical quality that were not correlated with either nurse or family ratings. Despite care gaps, families were generally satisfied with the care delivered. We conclude that each measurement perspective provides an independent view that can guide quality improvement and innovation work as well as subsequent research.

Purpose: To describe educational features in palliative and end-of-life care (PEOLC) in pulmonary/critical care fellowships and identify the features associated with perceptions of trainee competence in PEOLC., Methods: A survey of educational features in 102 training programs and the perceived skill and comfort level of trainees in 6 PEOLC domains: communication, symptom control, ethical/legal, community/institutional resources, specific syndromes, and ventilator withdrawal. We evaluated associations between perceived trainee competence/comfort in PEOLC and training program features, using regression analyses., Results: Fifty-five percent of program directors (PDs) reported faculty with training in PEOLC; 30% had a written PEOLC curriculum. Neither feature was associated with trainee competence/comfort. Program directors and trainees rated bedside PEOLC teaching highly. Only 20% offered PEOLC rotations; most trainees judged these valuable. Most PDs and trainees reported that didactic teaching was insufficient in communication, although sufficient teaching of this was associated with perceived trainee competence in communication. Perceived trainee competence in managing institutional resources was rated poorly. Program directors reporting significant barriers to PEOLC education also judged trainees less competent in PEOLC. Time constraint was the greatest barrier., Conclusion: This survey of PEOLC education in US pulmonary/critical care fellowships identified associations between certain program features and perceived trainee skill in PEOLC. These results generate hypotheses for further study., (Copyright © 2015 Elsevier Inc. All rights reserved.)

In 2009, the American Thoracic Society (ATS) funded an assembly project, Palliative Management of Dyspnea Crisis, to focus on identification, management, and optimal resource utilization for effective palliation of acute episodes of dyspnea. We conducted a comprehensive search of the medical literature and evaluated available evidence from systematic evidence-based reviews (SEBRs) using a modified AMSTAR approach and then summarized the palliative management knowledge base for participants to use in discourse at a 2009 ATS workshop. We used an informal consensus process to develop a working definition of this novel entity and established an Ad Hoc Committee on Palliative Management of Dyspnea Crisis to further develop an official ATS document on the topic. The Ad Hoc Committee members defined dyspnea crisis as "sustained and severe resting breathing discomfort that occurs in patients with advanced, often life-limiting illness and overwhelms the patient and caregivers' ability to achieve symptom relief." Dyspnea crisis can occur suddenly and is characteristically without a reversible etiology. The workshop participants focused on dyspnea crisis management for patients in whom the goals of care are focused on palliation and for whom endotracheal intubation and mechanical ventilation are not consistent with articulated preferences. However, approaches to dyspnea crisis may also be appropriate for patients electing life-sustaining treatment. The Ad Hoc Committee developed a Workshop Report concerning assessment of dyspnea crisis; ethical and professional considerations; efficient utilization, communication, and care coordination; clinical management of dyspnea crisis; development of patient education and provider aid products; and enhancing implementation with audit and quality improvement.

Assessment and management of dyspnea has emerged as a priority topic for quality evaluation and improvement. Evaluating dyspnea quality of care requires valid, reliable, and responsive measures of the care provided to patients across settings and diseases. As part of an Agency for Healthcare Research and Quality Symposium, we reviewed quality of care measures for dyspnea by compiling quality measures identified in systematic searches and reviews. Systematic reviews identified only three existing quality measurement sets that included quality measures for dyspnea care. The existing dyspnea quality measures reported by retrospective evaluations of care assess only four aspects: dyspnea assessment within 48 hours of hospital admission, use of objective scales to rate dyspnea severity, identification of management plans, and evidence of dyspnea reduction. To begin to improve care, clinicians need to assess and regularly document patient's experiences of dyspnea. There is no consensus on how dyspnea should be characterized for quality measurement, and although over 40 tools exist to assess dyspnea, no rating scale or instrument is ideal for palliative care. The panel recommended that dyspnea assessment should include a measure of intensity and some inquiry into the associated bother or distress experienced by the patient. A simple question into the presence or absence of dyspnea would be unlikely to help guide therapy, as complete relief of dyspnea in advanced disease would not be anticipated. Additional knowledge gaps include standards for clinical dyspnea care, assessment in the cognitively impaired, and evaluation of effectiveness of dyspnea care for patients with advanced disease.

In the ICU where critically ill patients receive aggressive life-sustaining interventions, suffering is common and death can be expected in up to 20% of patients. High-quality pain management is a part of optimal therapy and requires knowledge and skill in pharmacologic, behavioral, social, and communication strategies grounded in the holistic palliative care approach. This contemporary review article focuses on pain management within comprehensive palliative and end-of-life care. These key points emerge from the transdisciplinary review: (1) all ICU patients experience opportunities for discomfort and suffering regardless of prognosis or goals, thus palliative therapy is a requisite approach for every patient, of which pain management is a principal component; (2) for those dying in the ICU, an explicit shift in management to comfort-oriented care is often warranted and may be the most beneficial treatment the health-care team can offer; (3) communication and cultural sensitivity with the patient-family unit is a principal approach for optimizing palliative and pain management as part of comprehensive ICU care; (4) ethical and legal misconceptions about the escalation of opiates and other palliative therapies should not be barriers to appropriate care, provided the intention of treatment is alleviation of pain and suffering; (5) standardized instruments, performance measurement, and care delivery aids are effective strategies for decreasing variability and improving palliative care in the complex ICU setting; and (6) comprehensive palliative care should addresses family and caregiver stress associated with caring for critically ill patients and anticipated suffering and loss.

Background: Many persons and their families are burdened by serious chronic illness in late life. How to best support quality of life is an important consideration for care., Purpose: To assess evidence about interventions to improve palliative and end-of-life care., Data Sources: English-language citations (January 1990 to November 2005) from MEDLINE, the Database of Abstracts of Reviews of Effects, the National Consensus Project for Quality Palliative Care bibliography, and November 2005 to January 2007 updates from expert reviews and literature surveillance., Study Selection: Systematic reviews that addressed "end of life," including terminal illness (for example, advanced cancer) and chronic, eventually fatal illness with ambiguous prognosis (for example, advanced dementia), and intervention studies (randomized and nonrandomized designs) that addressed pain, dyspnea, depression, advance care planning, continuity, and caregiving., Data Extraction: Single reviewers screened 24,423 titles to find 6381 relevant abstracts and reviewed 1274 articles in detail to identify 33 high-quality systematic reviews and 89 relevant intervention studies. They synthesized the evidence by using the Grading of Recommendations, Assessment, Development, and Evaluation (GRADE) classification., Data Synthesis: Strong evidence supports treating cancer pain with opioids, nonsteroidals, radionuclides, and radiotherapy; dyspnea from chronic lung disease with short-term opioids; and cancer-associated depression with psychotherapy, tricyclics, and selective serotonin reuptake inhibitors. Strong evidence supports multi component interventions to improve continuity in heart failure. Moderate evidence supports advance care planning led by skilled facilitators who engage key decision makers and interventions to alleviate caregiver burden. Weak evidence addresses cancer-related dyspnea management, and no evidence addresses noncancer pain, symptomatic dyspnea management in advanced heart failure, or short-acting antidepressants in terminal illness. No direct evidence addresses improving continuity for patients with dementia. Evidence was weak for improving caregiver burdens in cancer and was absent for heart failure., Limitations: Variable literature indexing for advanced chronic illness and end of life limited the comprehensiveness of searches, and heterogeneity was too great to do meta-analysis., Conclusion: Strong to moderate evidence supports interventions to improve important aspects of end-of-life care. Future research should quantify these effects and address the generalizability of insights across the conditions and settings of the last part of life. Many critical issues lack high-quality evidence.

The objective of this study was to systematically review the literature to better understand the conceptualization of satisfaction with end-of-life care and the effectiveness of palliative care interventions on this outcome. Data sources included Medline and the Database of Reviews of Effects. The review included relevant qualitative studies and intervention studies using satisfaction as an outcome from 1990 to 2005. Reviewing 24,423 citations yielded 21 relevant qualitative studies, four systematic reviews, and eight additional intervention studies. The qualitative literature described the domains of accessibility and coordination; competence, including symptom management; communication and education; emotional support and personalization of care; and support of patients' decision-making. For collaboration and consultation interventions, eight of 13 studies showed a significant effect on satisfaction. A meta-analysis found that palliative care and hospice teams improved satisfaction, although most studies did not include satisfaction as an outcome. For other types of interventions, only two of six showed a significant effect. For heart failure coordination of care, only seven of 32 studies addressed this as an outcome; two of the three that compared satisfaction between groups showed a significant difference. Evaluations used many different measures, only one of which was designed for the end of life. In conclusion, researchers have conceptualized satisfaction in palliative care, and different types of palliative care interventions can improve satisfaction, but it is often not included as an outcome. More focus on these satisfaction elements might improve the effectiveness of end-of-life interventions and their evaluation.

Palliative care aims to improve the quality of life of patients and their families and reduce suffering from life-threatening illness. In assessing palliative care efficacy, researchers must consider a broad range of potential outcomes, including those experienced by the patient's family/caregivers, clinicians, and the health care system. The purpose of this article is to summarize the discussions and recommendations of an Outcomes Working Group convened to advance the palliative care research agenda, particularly in the context of randomized controlled trials. These recommendations address the conceptualization of palliative care outcomes, sources of outcomes data, application of outcome measures in clinical trials, and the methodological challenges to outcome measurement in palliative care populations. As other fields have developed and refined methodological approaches that address their particular research needs, palliative care researchers must do the same to answer important clinical questions in rigorous and credible ways.

For critically ill patients and their loved ones, high-quality health care includes the provision of excellent palliative care. To achieve this goal, the healthcare system needs to identify, measure, and report specific targets for quality palliative care for critically ill or injured patients. Our objective was to use a consensus process to develop a preliminary set of quality measures to assess palliative care in the critically ill. We built on earlier and ongoing efforts of the Robert Wood Johnson Foundation Critical Care End-of-Life Peer Workgroup to propose specific measures of the structure and process of palliative care. We used an informal iterative consensus process to identify and refine a set of candidate quality measures. These candidate measures were developed by reviewing previous literature reviews, supplementing the evidence base with recently published systematic reviews and consensus statements, identifying existing indicators and measures, and adapting indicators from related fields for our objective. Among our primary sources, we identified existing measures from the Voluntary Hospital Association's Transformation of the ICU program and a government-sponsored systematic review performed by RAND Health to identify palliative care quality measures for cancer care. Our consensus group proposes 18 quality measures to assess the quality of palliative care for the critically ill and injured. A total of 14 of the proposed measures assess processes of care at the patient level, and four measures explore structural aspects of critical care delivery. Future research is needed to assess the relationship of these measures to desired health outcomes. Subsequent measure sets should also attempt to include outcome measures, such as patient or surrogate satisfaction, as the field develops the means to rigorously measure such outcomes. The proposed measures are intended to stimulate further discussion, testing, and refinement for quality of care measurement and enhancement.

Quality of health care is primarily concerned with the provision of health services that intend to lead to valued health outcomes and are based and driven by evidence. Among other desired health outcomes are patient-and-family-centered values consistent with proficient palliative and end-of-life care in the intensive care unit. The research in palliative and end-of-life care has elucidated important domains for quality care-in general, major targets for improvement are known. However, assessment of quality at local and national levels remains relevant as innovators select where to begin quality improvement efforts and the healthcare system evaluates the efficacy and potential harm from care delivery transformations. In this article, I endeavor to impart a practical framework for quality of end-of-life care assessment with the goal of guiding the selection of initiatives and evaluating cycles of innovation. I will ground this quality evaluation by reviewing palliative and end-of-life care and the known domains for quality palliative care. Although the field has identified candidate indicators for evaluating palliative and end-of-life care in the intensive care unit, future work is needed to operationalize assessment for important aspects of care with valid, reliable, acceptable, efficient, and responsive measures.

Purpose: Measuring quality of care for symptom management and ascertaining patient goals offers an important step toward improving palliative cancer management. This study was designed to identify systematically the quality measures and the evidence to support their use in pain, dyspnea, depression, and advance care planning (ACP), and to identify research gaps., Methods: English-language documents were selected from MEDLINE, Cumulative Index to Nursing and Allied Health, PsycINFO (1995 to 2005); Internet-based searches; and contact with measure developers. We used terms for each domain to select studies throughout the cancer care continuum. We included measures that expressed a normative relationship to quality, specified the target population, and specified the indicated care. Dual data review and abstraction was performed by palliative care researchers describing populations, testing, and attributes for each measure., Results: A total of 4,599 of 5,182 titles were excluded at abstract review. Of 537 remaining articles, 19 contained measures for ACP, six contained measures for depression, five contained measures for dyspnea, and 20 contained measures for pain. We identified 10 relevant measure sets that included 36 fully specified or fielded measures and 14 additional measures (16 for pain, five for dyspnea, four for depression, and 25 for ACP). Most measures were unpublished, and few had been tested in a cancer population. We were unable to describe the specifications of all measures fully and did not search for measures for pain and depression that were not cancer specific., Conclusion: Measures are available for assessing quality and guiding improvement in palliative cancer care. Existing measures are weighted toward ACP, and more nonpain symptom measures are needed. Additional testing is needed before the measures are used for accountability, and basic research is required to address measurement when self-report is impaired.

As background for a National Institutes of Health State of the Science Conference on End-of-Life-Care, we performed a systematic review of end-of-life care and outcomes. The systematic review was intended to evaluate the evidence in the field from the perspective of concerns important to patients, caregivers, and the health care system. This article relates the challenges in performing a systematic review of end-of-life care and outcomes, and describes the methods that we used to define the scope, search the literature, develop exclusion and inclusion criteria, incorporate various types of articles, and synthesize the results. Major challenges to conducting a review included the need to define "end of life," clarify a conceptual framework of outcomes including definitions of terms and the relationships among terms, and determine specific goals for the review. The review identified 24,423 total citations, of which 911 comprised the final set used for the evidence report. This very large, diverse body of literature reflects the tremendous growth of the field of end-of-life care over the last decade.

Pain management is an essential component of quality care delivery for the critically ill patient. Because outcomes are difficult to predict in the intensive care unit (ICU), high-quality pain management and palliative therapy should be a goal for every patient. For those patients actively dying, palliation may be among the main benefits offered by the health care team. Appropriate palliation of pain begins with the use of effective strategies for recognizing, evaluating,and monitoring pain. Skill in pain management requires knowledge of both pharmacologic and nonpharmacologic therapies. This article focuses on expertise in the use of opiates to facilitate confident and appropriate pain therapy. To optimize palliative therapy, symptoms are best addressed by interdisciplinary care teams guided by models that acknowledge a continuum of curative therapies and palliative care.

Objectives:Music-thanatology is a palliative modality that uses harp and voice to provide bedside vigils, particularly for terminally ill or actively dying. We sought to determine the benefits of music vigils for terminally ill patients.Methods:Survey of 55 family members, whose terminally ill loved one experienced a music vigil during hospitalization, regarding effects on the patient's breathing, relaxation, comfort, pain and ability to sleep. Written comments on negative and positive results of the vigils were coded using content analysis.Results:Family members perceived that the vigils resulted in modest improvement in the patients' breathing, relaxation, comfort, and ability to sleep, with fewer positive effects on pain, and almost no negative effects. Open ended comments focused on the positive benefit in increasing calm, relaxation, comfort. Comments on the positive effects for the family were almost as common as comments on the positive results for the patient.Significance of Results:The use of music-vigils in palliative care should be investigated more extensively as our study supports that this intervention has benefits, almost no risk, minimal cost, and may improve patient-family experience of the dying process. [ABSTRACT FROM PUBLISHER]

Abstract: Patients with advanced cancer often do not receive high-quality pain and symptom management or support with coordination of care, communication, and decision making. Implementing quality indicators that are reflective of the scope of care, feasible to implement, and supported by evidence might help to identify areas and settings most in need of improvement. However, recent reviews and policy initiatives identified only a few indicators that met these criteria. To help advance quality indicator development and implementation in this area, we developed a conceptual framework based on previous related initiatives, updated reviews of end-of-life cancer quality indicators and relevant data sources, and expert input. The framework describes five steps for developing and assessing a quality indicator for end-of-life care, defining the 1) population of focus, 2) broad quality domains, 3) specific target areas, 4) steps of the care process, and 5) evaluation criteria for quality indicators. The defined population includes seriously or terminally ill cancer patients, who are unlikely to recover or stabilize, and their families. Domains include the structure and processes of care; the physical, psychiatric, psychosocial, spiritual, and cultural aspects of care; as well as the care of the imminently dying, ethical and legal issues, and the delivery of care. Evaluation criteria include importance; scientific acceptability, including validity, evidence to improve outcomes, reliability, responsiveness, and variability; usability; and feasibility, including ready data sources. By using this conceptual framework, indicator developers, researchers, and policymakers can refine and implement indicator sets to effectively evaluate and improve care at the end of life. [Copyright &y& Elsevier]