Search

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. See related article by Freed et al. and editorial by Ankuda et al. in this issue. [ABSTRACT FROM AUTHOR]

The article discusses research which assessed racial/ethnic and socioeconomic disparities in days alive at home (DAH), particularly in a critically ill population receiving home-based palliative care. The study compared race/ethnicity and Neighborhood Deprevation Index (NDI) groups. It analyzed variables associated with DAH including 30-day Edmonton Symptom Assessment System (ESAS) change score, as well as patient-reported measures of symptom burden.

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. [ABSTRACT FROM AUTHOR]

Objective: To systematically capture patient- and family-centered data to understand variability and opportunities in end-of-life care delivery across settings in an integrated health care delivery system. Background: Improving the quality of end-of-life care requires assessing patient and family experiences across settings where care occurs, but we found no existing instrument suitable for this purpose. Methods: We conducted a cross-sectional survey with 10,308 surviving respondents (usually next of kin) of decedents in five Kaiser Permanente operating regions. The survey included eight items from an existing validated survey and three original items. Results: The overall response rate was 26% (2631). Most respondents reported that they were knowledgeable about decedents' end-of-life care and preferences. Across regions, 80% of respondents reported overall end-of-life care as excellent or very good. The proportion of excellent and very good responses was 74–84% across regions for items assessing attributes of end-of-life care, with statistically significant differences (p < 0.05). The proportion of positive responses was 69–89%. Overall, end-of-life care was rated as excellent or very good for a greater proportion of patients who received palliative care, hospice care, or both (78–82%), compared to those who did not (69%, p < 0.05 for all). Discussion: Regions are using data to inform end-of-life care initiatives. Assessing patient and family experiences of end-of-life care across settings with a single survey was feasible and provided valuable information supporting quality improvement. The survey met our need for a general purpose survey on end-of-life care experience. [ABSTRACT FROM AUTHOR]

Introduction: As health care systems strive to meet the growing needs of seriously ill patients with high symptom burden and functional limitations, they need evidence about how best to deliver home-based palliative care (HBPC). We compare a standard HBPC model that includes routine home visits by nurses and prescribing clinicians with a tech-supported model that aims to promote timely interprofessional team coordination using video consultation with the prescribing clinician while the nurse is in the patient's home. We hypothesize that tech-supported HBPC will be no worse compared with standard HBPC. Methods: This study is a pragmatic, cluster randomized noninferiority trial conducted across 14 Kaiser Permanente sites in Southern California and the Pacific Northwest. Registered nurses (n = 102) were randomized to the two models so that approximately half of the participating patient–caregiver dyads will be in each study arm. Adult English or Spanish-speaking patients (estimate 10,000) with any serious illness and a survival prognosis of 1–2 years and their caregivers (estimate 4800) are being recruited to the HomePal study over ∼2.5 years. The primary patient outcomes are symptom improvement at one month and days spent at home. The primary caregiver outcome is perception of preparedness for caregiving. Study Implementation—Challenges and Contributions: During implementation we had to balance the rigors of conducting a clinical trial with pragmatic realities to ensure responsiveness to culture, structures, workforce, workflows of existing programs across multiple sites, and emerging policy and regulatory changes. We built close partnerships with stakeholders across multiple representative groups to define the comparators, prioritize and refine measures and study conduct, and optimize rigor in our analytical approaches. We have also incorporated extensive fidelity monitoring, mixed-method implementation evaluations, and early planning for dissemination to anticipate and address challenges longitudinally. Trial Registration: ClinicalTrials.gov: NCT#03694431. [ABSTRACT FROM AUTHOR]

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. See related editorial by Calton et al. in this issue. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

The article discusses the concept of pain management within the palliative and end-of-life experience in the intensive care unit (ICU). It states that high pain management requires skill in phamacologic, behavioral, social and communication strategies in the holistic palliative care approach. It evaluates the experience of patients at ICU, patient who with beneficial treatment of healthcare team. Moreover, it explores also the impact of comprehensive palliative care.

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 multicomponent 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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

The article presents an intensive care unit (ICU) daily care plan checklist#123 that can be used to promote palliative care, simultaneously with curative or life-prolonging therapies. The checklist would be helpful in clarifying the goals of care for the ICU team and all concerned to improve the quality of palliative care. The artcile also details the contents of the checklist.

The author discusses the use of a preadmission checklist#122 that can be helpful to determine the appropriateness of intensive care unit (ICU) therapy for the chronically and/or terminally ill. The article advises that the patient-centered goals of care should be taken into consideration while opting for a care plan that integrates palliation into the daily agenda. The article also provides the contents of the checklist.

Abstract: 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. [Copyright &y& Elsevier]

Background: Family members' perspectives about satisfaction with care provided in the intensive care unit (ICU) have become an important part of quality assessment and improvement, but national and international differences may exist in care provided and family perspectives about satisfaction with care. Objective: The purpose of the research was to understand family members' perspectives regarding overall care of medical patients receiving intensive care. Methods: Family members of medical patients who remained 48 hours or more in two adult ICUS at two healthcare institutions in the U.S. Pacific Northwest took part by responding to the Family Satisfaction with Care in the Intensive Care Unit survey. Qualitative content analysis was used to identify major categories and subcategories in their complimentary (positive) or critical (negative) responses to open-ended questions. The number of comments in each category and subcategory was counted. Results: Of 138 responding family members, 106 answered the open-ended questions. The 281 comments were more frequently complimentary (n = 126) than critical (n = 91). Three main categories (competent care, communication, and environment) and nine subcategories were identified. Comments about the subcategory of emotional/interrelational aspects of care occurred most frequently and were more positive than comments about practical aspects of care. Discussion: Findings were similar to those reported from other countries. Emotional/interrelational aspects of care were integral to family member satisfaction with care provided. Findings suggest that improving communication and decision-making, supporting family members, and caring for family loved ones as a person are important care targets. Initiatives to improve ICU care should include assessments from families and opportunity for qualitative analysis to refine care targets and assess changes. [ABSTRACT FROM AUTHOR]