European Respiratory Society clinical practice guideline on symptom management for adults with serious respiratory illness.

Respiratory symptoms are ubiquitous and impair health-related quality of life in people with respiratory disease. This European Respiratory Society (ERS) task force aimed to provide recommendations for symptomatic treatment in people with serious respiratory illness. The ERS task force comprised 16 members, including representatives of people with serious respiratory illness and informal caregivers. Seven questions were formulated, six in the PICO (Population, Intervention, Comparison, Outcome) format, which were addressed with full systematic reviews and evidence assessed using GRADE (Grading of Recommendations Assessment, Development and Evaluation). One question was addressed narratively. An "evidence-to-decision" framework was used to formulate recommendations. To treat symptoms in people with serious respiratory illness, the task force suggests the use of graded exercise therapy (conditional recommendation, low certainty of evidence); and suggests the use of a multicomponent services, handheld fan and breathing techniques (conditional recommendations, very low certainty of evidence). The task force suggests not to use opioids (conditional recommendation, very low certainty of evidence); and suggests either administering or not administering supplemental oxygen therapy (conditional recommendation, low certainty of evidence). The task force suggests that needs assessment tools may be used as part of a comprehensive needs assessment, but do not replace patient-centred care and shared decision making (conditional recommendation, low certainty of evidence). The low certainty of evidence, modest impact of interventions on patient-centred outcomes, and absence of effective strategies to ameliorate cough highlight the need for new approaches to reduce symptoms and enhance wellbeing for individuals who live with serious respiratory illness.

Health System Approach to Improve Chronic Obstructive Pulmonary Disease Care after Hospital Discharge: Stepped-Wedge Clinical Trial.

Rationale: Patients discharged from the hospital for chronic obstructive pulmonary disease (COPD) exacerbation have impaired quality of life and frequent readmission and death. Clinical trials to reduce readmission demonstrate inconsistent results, including some demonstrating potential harms. Objectives: We tested whether a pragmatic proactive interdisciplinary and virtual review of patients discharged after hospitalization for COPD exacerbation would improve quality of life, using the Clinical COPD Questionnaire, and reduce all-cause 180-day readmission and/or mortality. Methods: We performed a stepped-wedge clinical trial. We enrolled primary care providers and their patients after hospital discharge for COPD at two Department of Veterans Affairs medical centers and 10 outpatient clinics. A multidisciplinary team reviewed health records and developed treatment recommendations delivered to primary care providers via E-consult. We facilitated uptake by entering recommendations as unsigned orders that could be accepted, modified, or canceled. Providers and patients made all final treatment decisions. Measurements and Main Results: We enrolled 365 primary care providers. Over a 30-month period, 352 patients met eligibility criteria, with 191 (54.3%) patients participating in the control and 161 (45.7%) in the intervention. The intervention led to clinically significant better Clinical COPD Questionnaire scores (-0.47; 95% confidence interval [CI], -0.85 to -0.09; 52.6% missing) but did not reduce 180-day readmission and/or mortality (adjusted odds ratio, 0.83; 95% CI, 0.49 to 1.38), in part because of wide CIs. Among the 161 patients in the intervention group, we entered 519 recommendations as unsigned orders, of which 401 (77.3%) were endorsed. Conclusions: A pragmatic health system-level intervention that delivered proactive specialty supported care improved quality of life but did not reduce 180-day readmission or death. Clinical trial registered with www.clinicaltrials.gov (NCT02021955).

Palliative Care Early in the Care Continuum among Patients with Serious Respiratory Illness: An Official ATS/AAHPM/HPNA/SWHPN Policy Statement.

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.

Making Medical Treatment Decisions for Unrepresented Patients in the ICU. An Official American Thoracic Society/American Geriatrics Society Policy Statement.

Background and Rationale: ICU clinicians regularly care for patients who lack capacity, an applicable advance directive, and an available surrogate decision-maker. Although there is no consensus on terminology, we refer to these patients as "unrepresented." There is considerable controversy about how to make treatment decisions for these patients, and there is significant variability in both law and clinical practice.Purpose and Objectives: This multisociety statement provides clinicians and hospital administrators with recommendations for decision-making on behalf of unrepresented patients in the critical care setting.Methods: An interprofessional, multidisciplinary expert committee developed this policy statement by using an iterative consensus process with a diverse working group representing critical care medicine, palliative care, pediatric medicine, nursing, social work, gerontology, geriatrics, patient advocacy, bioethics, philosophy, elder law, and health law.Main Results: The committee designed its policy recommendations to promote five ethical goals: 1) to protect highly vulnerable patients, 2) to demonstrate respect for persons, 3) to provide appropriate medical care, 4) to safeguard against unacceptable discrimination, and 5) to avoid undue influence of competing obligations and conflicting interests. These recommendations also are intended to strike an appropriate balance between excessive and insufficient procedural safeguards. The committee makes the following recommendations: 1) institutions should offer advance care planning to prevent patients at high risk for becoming unrepresented from meeting this definition; 2) institutions should implement strategies to determine whether seemingly unrepresented patients are actually unrepresented, including careful capacity assessments and diligent searches for potential surrogates; 3) institutions should manage decision-making for unrepresented patients using input from a diverse interprofessional, multidisciplinary committee rather than ad hoc by treating clinicians; 4) institutions should use all available information on the patient's preferences and values to guide treatment decisions; 5) institutions should manage decision-making for unrepresented patients using a fair process that comports with procedural due process; 6) institutions should employ this fair process even when state law authorizes procedures with less oversight.Conclusions: This multisociety statement provides guidance for clinicians and hospital administrators on medical decision-making for unrepresented patients in the critical care setting.

Care Plan Standardization for Older Adults: Opportunities for Nursing Leadership.

Care plans guide and document achievement of short- and long-term goals. However, most care plans are discipline oriented, document medical problems, and lack person-centered information such as care preferences. The current authors' goal was to explore the status of comprehensive care plans and the future application of sharing data among health care providers and settings. Semi-structured interviews were conducted among a variety of professionals in six geographically diverse settings to learn the status and performance of care plans. Various biases, regular and irregular omissions, and lack of long-term perspectives in the care plan generation processes were found. These deficits support the need for developing comprehensive standardized care plans to improve access, coordination, and quality of care for older adults. Nurses are in an ideal position to lead local, state, and national initiatives to drive policies for comprehensive care plans that will improve access to and quality of care delivery to older adults. [Journal of Gerontological Nursing, 44(12), 11-16.].

Which patient and clinician characteristics are associated with high-quality communication among veterans with chronic obstructive pulmonary disease?

The authors evaluated associations of patient and clinician characteristics with high-quality communication among patients with chronic obstructive pulmonary disease. Using a cross-sectional analysis from patients with chronic obstructive pulmonary disease enrolled in a clinical trial, the authors evaluated the association of patient and clinician characteristics with patient-reported communication quality. The authors measured these associations using general estimating equations and adjusted odds ratios for best imagined communication quality. Most patient and clinician characteristics, including age, race/ethnicity, mental health attributes, and clinician specialty, were not associated with communication quality. Patient-reported clinician expertise (OR = 2.10, 95% CI [1.52, 2.88], p < .001) was associated with increased communication quality, while the patient not being married was associated with decreased quality (OR = 0.52, 95% CI [0.27, 0.99], p = .047). Only one modifiable characteristic, patient-reported clinician expertise, was associated with best imagined communication quality. This characteristic may be important to include as a potential intermediate outcome in future communication intervention studies. Predictors and outcomes of communication quality are not uniform across patient populations and settings. To maximize the effectiveness of communication interventions, it is important to have a thorough understanding of which patient, clinician, and system factors are associated with communication quality.

Nurse-Led, Telephone-Based Primary Palliative Care Intervention for Patients With Lung Cancer: Domains of Quality Care.

Palliative care is traditionally delivered by specialty-trained palliative care teams. Because of a national workforce shortage of palliative care specialists, there is an urgent need to explore alternative models of palliative care delivery to meet the needs of patients living with serious illness. As part of a multisite randomized controlled trial, 2 registered nurses without previous palliative care experience were trained to deliver a primary palliative care intervention to patients with newly diagnosed lung cancer. The intervention focused on assessing and managing symptoms, psychosocial needs, education, and initiating goals-of-care discussions. The primary outcome, improved symptom burden and quality of life, was not statistically significant. Despite this finding, nurses addressed 5 of the 8 National Consensus Project Guidelines domains of quality palliative care: structure and processes of care; physical, psychological, and social aspects of care; and ethical and legal aspects. Patients' engagement in goals-of-care discussions, a measure of high-quality palliative care, increased. Clinical recommendations offered by the nurses to the patients' clinicians were addressed and accepted on a timely basis. Most patients rated satisfaction with the intervention as "very or extremely" satisfied. These findings may inform future nurse-led palliative care interventions on the specific quality domains of palliative care.

Dying with dementia in nursing homes: A population-based study of decedents and their families.

BACKGROUND: Families play a critical role in end-of-life (EOL) care for nursing home (NH) residents with dementia. Despite the important role of family, little is known about the availability and characteristics of families of persons with dementia who die in NHs. METHODS: This is a retrospective cohort study of 18,339 individuals 65 years and older with dementia who died in a Utah NH between 1998 and 2016, linked to their first-degree family (FDF) members (n = 52,566; spouses = 11.3%; children = 58.3%; siblings = 30.3%). Descriptive statistics, chi-square tests, and t-tests were used to describe the study cohort and their FDF members and to compare sociodemographic and death characteristics of NH decedents with (n = 14,398; 78.5%) and without FDF (n = 3941; 21.5%). RESULTS: Compared with NH decedents with FDF, NH decedents with dementia without FDF members were more likely to be older (mean age 86.5 vs 85.5), female (70.5% vs 59.3%), non-White/Hispanic (9.9% vs 3.2%), divorced/separated/widowed (84.4% vs 61.1%), less educated (<12th grade; 42.2% vs 33.7%), have Medicare and Medicaid (20.8% vs 12.5%), and die in a rural/frontier NH (25.0% vs 23.4%). NH decedents who did not have FDF were also more likely to die from cancer (4.2% vs 3.9%), chronic obstructive pulmonary disease (COPD; 3.9% vs 2.5%), and dementia (40.5% vs 38.4%) and were less likely to have 2+ inpatient hospitalizations at EOL (13.9% vs 16.2%), compared with NH decedents with FDF. CONCLUSIONS: Findings highlight differences in social determinants of health (e.g., sex, race, marital status, education, insurance, rurality) between NH decedents with dementia who do and do not have FDF-factors that may influence equity in EOL care. Understanding the role of family availability and familial characteristics on EOL care outcomes for NH residents with dementia is an important next step to informing NH dementia care interventions and health policies.

Effect of communication skills training for residents and nurse practitioners on quality of communication with patients with serious illness: a randomized trial.

IMPORTANCE: Communication about end-of-life care is a core clinical skill. Simulation-based training improves skill acquisition, but effects on patient-reported outcomes are unknown. OBJECTIVE: To assess the effects of a communication skills intervention for internal medicine and nurse practitioner trainees on patient- and family-reported outcomes. DESIGN, SETTING, AND PARTICIPANTS: Randomized trial conducted with 391 internal medicine and 81 nurse practitioner trainees between 2007 and 2013 at the University of Washington and Medical University of South Carolina. INTERVENTION: Participants were randomized to an 8-session, simulation-based, communication skills intervention (N = 232) or usual education (N = 240). MAIN OUTCOMES AND MEASURES: Primary outcome was patient-reported quality of communication (QOC; mean rating of 17 items rated from 0-10, with 0 = poor and 10 = perfect). Secondary outcomes were patient-reported quality of end-of-life care (QEOLC; mean rating of 26 items rated from 0-10) and depressive symptoms (assessed using the 8-item Personal Health Questionnaire [PHQ-8]; range, 0-24, higher scores worse) and family-reported QOC and QEOLC. Analyses were clustered by trainee. RESULTS: There were 1866 patient ratings (44% response) and 936 family ratings (68% response). The intervention was not associated with significant changes in QOC or QEOLC. Mean values for postintervention patient QOC and QEOLC were 6.5 (95% CI, 6.2 to 6.8) and 8.3 (95% CI, 8.1 to 8.5) respectively, compared with 6.3 (95% CI, 6.2 to 6.5) and 8.3 (95% CI, 8.1 to 8.4) for control conditions. After adjustment, comparing intervention with control, there was no significant difference in the QOC score for patients (difference, 0.4 points [95% CI, -0.1 to 0.9]; P = .15) or families (difference, 0.1 [95% CI, -0.8 to 1.0]; P = .81). There was no significant difference in QEOLC score for patients (difference, 0.3 points [95% CI, -0.3 to 0.8]; P = .34) or families (difference, 0.1 [95% CI, -0.7 to 0.8]; P = .88). The intervention was associated with significantly increased depression scores among patients of postintervention trainees (mean score, 10.0 [95% CI, 9.1 to 10.8], compared with 8.8 [95% CI, 8.4 to 9.2]) for control conditions; adjusted model showed an intervention effect of 2.2 (95% CI, 0.6 to 3.8; P = .006). CONCLUSIONS AND RELEVANCE: Among internal medicine and nurse practitioner trainees, simulation-based communication training compared with usual education did not improve quality of communication about end-of-life care or quality of end-of-life care but was associated with a small increase in patients' depressive symptoms. These findings raise questions about skills transfer from simulation training to actual patient care and the adequacy of communication skills assessment. TRIAL REGISTRATION: clinicaltrials.gov Identifier: NCT00687349.

Goals of care and end-of-life communication needs of persons with chronic respiratory disease.

PURPOSE OF THE REVIEW: To highlight recent advances in effective communication among persons with chronic respiratory diseases. The authors focus on communication science related to goals of care (GOC) discussions, medical devices, and life-sustaining invasive treatments. The authors discuss important considerations when working with individuals with low literacy and rurality. Communication handoffs between respiratory clinicians and/or palliative care to hospice clinicians are summarized to ensure effective person-centered and caregiver-centered care. RECENT FINDINGS: Studies suggest the following communication approaches: (1) clarify differences between palliative and end of life; (2) conduct conversations early and gradual throughout the illness trajectory; (3) distinguish types of GOC discussions as they relate to treatment preferences; (4) for patients from rural communities, include family members and spiritual leaders; (5) assess literacy and employ supportive strategies; (6) apply time-limited-trial framework for life-sustaining treatment (LST) decisions; and (7) standardize processes for communication handoffs to hospice clinicians to improve communication fidelity. SUMMARY: Effective communication tools for clinicians to engage in GOC discussions for persons with chronic respiratory diseases are grounded in a patient-centered framework. A trained clinician should lead these conversations and include interdisciplinary team members throughout the disease trajectory including at the end of life. These approaches may enable patients to express their values and care preferences as they evolve over time.

Evolution of Palliative Care in the Department of Veterans Affairs: Lessons from an Integrated Health Care Model.

Palliative care (PC) is beneficial, however, in many settings it is under-resourced and unable to consistently meet the needs of patients and their families. A lack of national health policy support for PC contributes to underutilization and the low value care experienced by many patients with serious illness at the end of life. Through a series of transformative health care structure and process improvements including developing robust initiatives and promoting institutional culture change, the Department of Veterans Affairs (VA) has significantly improved the quality of PC among veterans. VA's strategic simultaneous top-down and bottom-up approach to develop programs, policies, and initiatives provides important perspectives and deserves attention toward advancing PC in the broader U.S. health care system. Although opportunities for improvement exist, the comprehensive framework within VA should help inform the future of program development and serve as a model for integrated and accountable care organizations to emulate.

The Role of Palliative Care in COPD.

COPD is the fourth leading cause of death in the United States and is a serious respiratory illness characterized by years of progressively debilitating breathlessness, high prevalence of associated depression and anxiety, frequent hospitalizations, and diminished well-being. Despite the potential to confer significant quality-of-life benefits for patients and their care partners and to improve end-of-life (EOL) care, specialist palliative care is rarely implemented in COPD, and when initiated, it often occurs only at the very EOL. Primary palliative care delivered by frontline clinicians is a feasible model, but is not integrated routinely in COPD. In this review, we discuss the following: (1) the role of specialist and primary palliative care for patients with COPD and the case for earlier integration into routine practice; (2) the domains of the National Consensus Project Guidelines for Quality Palliative Care applied to people living with COPD and their care partners; and (3) triggers for initiating palliative care and practical ways to implement palliative care using case-based examples. This review solidifies that palliative care is much more than hospice and EOL care and demonstrates that early palliative care is appropriate at any point during the COPD trajectory. We emphasize that palliative care should be integrated long before the EOL to provide comprehensive support for patients and their care partners and to prepare them better for the EOL.

A Randomized Trial of a Nurse-Led Palliative Care Intervention for Patients with Newly Diagnosed Lung Cancer.

Background: Specialist palliative care improves quality of life (QOL), symptom burden, and may prolong survival among patients with advanced lung cancer. Previous trials focused on advanced disease, and less is known about patients across a broad range of stages. Objective: We sought to assess the effect of a nurse-led telephone-based primary palliative care intervention that focused on patients across a broad range of stages. Design, Setting, and Participants: We conducted a multisite randomized controlled trial in the United States involving patients diagnosed within two months with any stage or histology of lung cancer to compare the effects of a telephone-based palliative care intervention delivered by registered nurses trained in primary palliative care versus usual care. Main Outcomes and Measures: The primary outcome was the Functional Assessment of Cancer Therapy-Lung Scale Total Outcome Index (FACT-L TOI), which measures QOL and symptoms. We estimated having 80% power to detect a 5-point change from baseline to three months. Secondary outcome was a change in satisfaction of care, measured by the FAMCARE-P13. Results: A total of 151 patients were enrolled over 30 months. Patients were, on average, male (98%), age 70 years, White (85%), and 36% diagnosed with stage I-II, and 64% had stage III-IV. In comparison to usual care, patients in the nurse-led intervention did not report improvement in QOL from baseline to three months follow-up or demonstrate differences in treatment effect by site or cancer stage: FACT-L TOI 1.03 (95% confidence interval [CI]: -3.98 to 6.04). Satisfaction with care did not significantly improve: 0.66 (95% CI: -2.01 to 3.33). Conclusions: Among patients with newly diagnosed lung cancer, a nurse-led, primary palliative care intervention did not significantly improve QOL, symptom burden, or satisfaction of care. In contrast to several clinical trials demonstrating the effectiveness of delivering specialty palliative care with disease-modifying treatments on QOL among patients with advanced lung cancer, this intervention did not significantly improve QOL among patients with any stage lung cancer. Future research should identify which specific components of primary palliative care improve outcomes for patients newly diagnosed with lung cancer.

Treatment of Dyspnea in Advanced Disease and at the End of Life.

Dyspnea is a subjective experience of breathing discomfort that consists of qualitatively distinct sensations, varies in intensity, and can only be known through the patient's report. Dyspnea is akin to suffocation and is one of the most distressing symptoms experienced by patients with advanced illness and at the end of life. Common approaches to dyspnea management, such as pulmonary rehabilitation, breathing strategies, or supplemental oxygen, have become accepted through pragmatic use or because studies do not include dyspnea as a measured outcome. Patients and clinicians urgently need evidence-based treatments to alleviate this frightening symptom. To fill this gap, a group of dyspnea researchers with expertise to conduct a literature review of evidence-based interventions for dyspnea in patients with serious illness produced these guidelines. We present the evidence from the strongest recommendations for practice to the weakest recommendations and include practical considerations for clinical nurses.

Management of Dyspnea in Advanced Cancer: ASCO Guideline.

PURPOSE: To provide guidance on the clinical management of dyspnea in adult patients with advanced cancer. METHODS: ASCO convened an Expert Panel to review the evidence and formulate recommendations. An Agency for Healthcare Research and Quality (AHRQ) systematic review provided the evidence base for nonpharmacologic and pharmacologic interventions to alleviate dyspnea. The review included randomized controlled trials (RCTs) and observational studies with a concurrent comparison group published through early May 2020. The ASCO Expert Panel also wished to address dyspnea assessment, management of underlying conditions, and palliative care referrals, and for these questions, an additional systematic review identified RCTs, systematic reviews, and guidelines published through July 2020. RESULTS: The AHRQ systematic review included 48 RCTs and two retrospective cohort studies. Lung cancer and mesothelioma were the most commonly addressed types of cancer. Nonpharmacologic interventions such as fans provided some relief from breathlessness. Support for pharmacologic interventions was limited. A meta-analysis of specialty breathlessness services reported improvements in distress because of dyspnea. RECOMMENDATIONS: A hierarchical approach to dyspnea management is recommended, beginning with dyspnea assessment, ascertainment and management of potentially reversible causes, and referral to an interdisciplinary palliative care team. Nonpharmacologic interventions that may be offered to relieve dyspnea include airflow interventions (eg, a fan directed at the cheek), standard supplemental oxygen for patients with hypoxemia, and other psychoeducational, self-management, or complementary approaches. For patients who derive inadequate relief from nonpharmacologic interventions, systemic opioids should be offered. Other pharmacologic interventions, such as corticosteroids and benzodiazepines, are also discussed.Additional information is available at www.asco.org/supportive-care-guidelines.

Symptom Burden and Palliative Care Needs Among High-Risk Veterans With Multimorbidity.

CONTEXT: Palliative care research has focused on patients with disease-specific conditions. However, older patients with multimorbidity may have unmet palliative care needs. OBJECTIVES: We assessed symptom burden and quality of life among veterans with multimorbidity and sought to determine if their bothersome symptoms were addressed and treated in the primary care setting. We sought to identify specific diagnoses that may account for greater symptom burden. We hypothesized that patients with a higher number of diagnoses would experience greater symptom burden and poorer quality of life. METHODS: We identified veterans at high risk of hospitalization or death using a validated prognostic model. We administered cross-sectional surveys via telephone, The Memorial Symptom Assessment Scale-Short Form and Veterans RAND 12, to randomly selected patients in primary care in the VA Health Care System from May to December 2015. We assessed if their most bothersome symptom was addressed and treated during their most recent visit. Regression models identified specific diagnoses accounting for greater symptom burden and patient predictors of high symptom burden and poor quality of life. RESULTS: Patients (n = 503) reported (10.6 ± 5.5) active symptoms and poor physical quality of life. Patients reported pain and dyspnea as their most bothersome symptoms (n = 145 [29%] and n = 57 [11%], respectively). Most patients acknowledged their clinicians assessed (n = 348 [74%]) and treated (n = 330 [70%]) their most bothersome symptom. Physical symptoms (78%, P < 0.0001) were more likely to be addressed than psychological symptoms (55%, P < 0.001). Patients diagnosed with obesity or depression experienced greater physical symptom burden. Younger patients reported greater symptom severity than older patients (P < 0.01). Younger patients and those with greater multimorbidities reported lower self-perceived quality of health than older patients and those with fewer multimorbidities (P = 0.01 and P < 0.01, respectively). CONCLUSION: Outpatients with multimorbidity have high symptom burden, unaddressed symptoms, poor quality of life, and unmet palliative care needs. Our findings support standardization of comprehensive symptom assessment and management in primary care for veterans with multimorbidities, which may ameliorate symptoms and improve quality of life.

Family Perceptions of Quality of End-of-Life Care for Veterans with Advanced CKD.

BACKGROUND AND OBJECTIVES: Little is known about the quality of end-of-life care for patients with advanced CKD. We describe the relationship between patterns of end-of-life care and dialysis treatment with family-reported quality of end-of-life care in this population. DESIGN, SETTING, PARTICIPANTS, & MEASUREMENTS: We designed a retrospective observational study among a national cohort of 9993 veterans with advanced CKD who died in Department of Veterans Affairs facilities between 2009 and 2015. We used logistic regression to evaluate associations between patterns of end-of-life care and receipt of dialysis (no dialysis, acute dialysis, maintenance dialysis) with family-reported quality of end-of-life care. RESULTS: Overall, 52% of cohort members spent ≥2 weeks in the hospital in the last 90 days of life, 34% received an intensive procedure, and 47% were admitted to the intensive care unit, in the last 30 days, 31% died in the intensive care unit, 38% received a palliative care consultation in the last 90 days, and 36% were receiving hospice services at the time of death. Most (55%) did not receive dialysis, 12% received acute dialysis, and 34% received maintenance dialysis. Patients treated with acute or maintenance dialysis had more intensive patterns of end-of-life care than those not treated with dialysis. After adjustment for patient and facility characteristics, receipt of maintenance (but not acute) dialysis and more intensive patterns of end-of-life care were associated with lower overall family ratings of end-of-life care, whereas receipt of palliative care and hospice services were associated with higher overall ratings. The association between maintenance dialysis and overall quality of care was attenuated after additional adjustment for end-of-life treatment patterns. CONCLUSIONS: Among patients with advanced CKD, care focused on life extension rather than comfort was associated with lower family ratings of end-of-life care regardless of whether patients had received dialysis.

Association of Family Ratings of Quality of End-of-Life Care With Stopping Dialysis Treatment and Receipt of Hospice Services.

Importance: Approximately 1 in 4 patients receiving maintenance dialysis for end-stage renal disease eventually stop treatment before death. Little is known about the association of stopping dialysis and quality of end-of-life care. Objectives: To evaluate the association of stopping dialysis before death with family-rated quality of end-of-life care and whether this association differed according to receipt of hospice services at the time of death. Design, Setting, and Participants: This survey study included data from 3369 patients who were treated with maintenance dialysis at 111 Department of Veterans Affairs medical centers and died between October 1, 2009, to September 30, 2015. Data set construction and analyses were conducted from September 2017 to July 2019. Exposure: Cessation of dialysis treatment before death. Main Outcomes and Measures: Bereaved Family Survey ratings. Results: Among 3369 patients included, the mean (SD) age at death was 70.6 (10.2) years, and 3320 (98.5%) were male. Overall, 937 patients (27.8%) stopped dialysis before death and 2432 patients (72.2%) continued dialysis treatment until death. Patients who stopped dialysis were more likely to have been receiving hospice services at the time of death than patients who continued dialysis (544 patients [58.1%] vs 430 patients [17.7%]). Overall, 1701 patients (50.5%) had a family member who responded to the Bereaved Family Survey. In adjusted analyses, families were more likely to rate overall quality of end-of-life care as excellent if the patient had stopped dialysis (54.9% vs 45.9%; risk difference, 9.0% [95% CI, 3.3%-14.8%]; P = .002) or continued to receive dialysis but also received hospice services (60.5% vs 40.0%; risk difference, 20.5% [95% CI, 12.2%-28.9%]; P < .001). Conclusions and Relevance: This survey study found that families rated overall quality of end-of-life care higher for patients who stopped dialysis before death or continued dialysis but received concurrent hospice services. More work to prepare patients for end-of-life decision-making and to expand access to hospice services may help to improve the quality of end-of-life care for patients with end-stage renal disease.

End-of-Life Care in Patients Exposed to Home-Based Palliative Care vs Hospice Only.

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.

Transitions regarding palliative and end-of-life care in severe chronic obstructive pulmonary disease or advanced cancer: themes identified by patients, families, and clinicians.

BACKGROUND: Classic trajectories of illness at end of life (EOL) suggest different care needs for patients with cancer versus chronic obstructive pulmonary disease (COPD) and may lead to different experiences of transitions over the course of a life-limiting illness. Patients may experience transitions in different ways than clinicians. No prior studies have examined this issue from patients', families', and clinicians' perspectives. OBJECTIVES: We sought to explore transitions, defined as experiences that patients and family members viewed as milestones in the evolution of their illnesses and therapies, and compare these perceptions with the perspectives of the patient's physician and nurse to provide insights about communication concerning EOL care. METHODS: We conducted a qualitative study using grounded theory to examine participants' perspectives on the experiences of key transitions in the context of living with advanced COPD or cancer. In-depth interviews with patients, family members, nurses, and physicians were conducted by experienced interviewers. RESULTS: Six themes were identified regarding participants' experiences with transitions. Themes that defined transitions among both patients with COPD and those with cancer included: new or different treatments and no more treatments available. Themes unique to patients with COPD were activity limitations due to functional decline and initiation of oxygen therapy. One theme unique to clinicians was acute exacerbation of illness or hospitalization. CONCLUSIONS: This study identified differences in the meaning of transitions for patients versus clinicians and for patients with COPD versus those with cancer. These findings may offer clinicians the opportunity to provide a more patient-centered approach to communication about end-of-life care by acknowledging and addressing transitions in palliative care from the perspective of the patient and family.