Palliative care research raises a host of ethical concerns. Obtaining informed consent from seriously ill patients and their families is often perceived as an additional burden. Alternative approaches to traditional written informed consent reflects the changing nature of modern trial design, embracing real-world effectiveness and pragmatic clinical trials with those who are seriously ill. Ethicists, clinical investigators, and regulatory bodies have acknowledged the challenges to rigorous, meaningful, and generalizable research across diverse patient populations in real-world settings. The purpose of this paper is to describe how these clinical trial designs have driven innovation in methods for achieving informed consent, with a focus on palliative care research. In this paper, we describe, and provide examples of consent waivers and three types of alternative approaches to consent, including broadcast notification, and integrated and targeted consent. We also present our experiences in an ongoing palliative care clinical trial, specifically using broadcast notification. Working with participants and regulatory oversight organizations, investigators can address the limits of traditional written informed consent and adopt innovative consent models to advance the science of palliative care. Research is now needed to determine the impact of these differing consent models on clinical trial recruitment, enrollment, and retention, as well as participants' informed understanding of their research participation using such models.
BACKGROUND: Little is known about the palliative care needs of patients awaiting lung transplantation. The aim of this study was to describe these needs in patients undergoing evaluation for or awaiting lung transplantation.
METHODS: Cross-sectional survey using an adapted version of the Needs at the End-of-life Screening Tool (NEST-13) at a US-based transplant program.
RESULTS: Among the 111 participants, 83.5% were white, 60.0% were female, and almost three-quarters had either restrictive or obstructive lung disease. The greatest palliative care needs included difficulty being physically active (mean: 7.9/10; SD: 2.6; median: 9.0), physical symptoms (mean: 7.4/10; SD: 2.6; median: 8.0), missing work due to illness (mean: 6.2/10; SD: 4.0; median: 8.0), and concerns that life might end (mean: 5.1/10; SD: 3.6; median: 5.0). Participants reported that religious/spiritual beliefs contribute to their sense of purpose (mean: 4.1/10; SD: 3.9) but had few unmet needs in this area (mean: 0.9/10; median: 0.0). Only 6.4% reported seeing a palliative care specialist and 48.2% were unsure what a palliative care specialist is.
CONCLUSION: There are substantial palliative care needs among lung transplant candidates, particularly physical symptoms and end-of-life concerns. These findings support integrating palliative care and end-of-life discussions in the management of lung transplant candidates.
CONTEXT: Improving end-of-life care (EOLC) quality among heart failure patients is imperative. Data are limited as to the hospital processes of care that facilitate this goal.
OBJECTIVES: To determine associations between hospital-level EOLC quality ratings and the EOLC delivered to heart failure patients.
METHODS: Retrospective analysis of the Veterans Health Administration (VA) and the Bereaved Family Survey data of heart failure patients from 2013-2015 who died in 107 VA hospitals. We calculated hospital-level observed-to-expected casemix-adjusted ratios of family-reported "excellent" EOLC, dividing hospitals into quintiles. Using logistic regression, we examined associations between quintiles and palliative care consultation (PCC), receipt of chaplain and bereavement services, inpatient hospice, and intensive care unit (ICU) death.
RESULTS: Of 6,256 patients, mean age was 77.4 (standard deviation=11.1), 98.3% were male, 75.7% white and 18.2% were black. Median hospital scores of "excellent" EOLC ranged from 41.3% (Interquartile range (IQR) 37.0-44.8%) in the lowest quintile to 76.4% (IQR 72.9-80.3%) in the highest. Patients who died in hospitals in the highest quintile, relative to the lowest, were slightly though not significantly more likely to receive a PCC (adjusted proportions 57.6% vs. 51.2%; p=0.32); but were more likely to receive chaplaincy (92.6% vs. 81.2%), bereavement (86.0% vs. 72.2%) and hospice (59.7% vs. 35.9%) and were less likely to die in the ICU (15.9% vs. 31.0%; p<0.05 for all).
CONCLUSION: Patients with heart failure who die in VA hospitals with higher overall EOLC quality receive more supportive EOLC. Research is needed that integrates care processes and develops scalable best-practices in EOLC across healthcare systems.
CONTEXT: As part of its Life Sustaining Treatment (LST) Decisions Initiative (LSTDI) the Veterans Health Administration (VA) in January 2017 began requiring electronic documentation of goals of care and preferences for Veterans with serious illness and at high risk for life-threatening events.
OBJECTIVES: To evaluate whether goals of "to be comfortable" were associated with greater palliative care (PC) use and lesser acute care use.
METHODS: We identified Veterans with VA inpatient or nursing home stays overlapping July 2018--January 2019, with LST templates documented by January 31, 2019, and who died by April 30, 2019 (N = 18,163). From template documentation, we identified a "to be comfortable" goal. Using VA and Medicare data we determined PC use (consultations and hospice) and hospital, intensive care unit (ICU) and emergency department (ED) use 7 and 30 days before death. Multivariate logistic regression examined the associations of interest.
RESULTS: Sixty-four percent of the 18,163 Veterans had comfort-care goals; 80% with comfort-care goals received hospice and 57% PC consultations (versus 57% and 46% [respectively] for decedents without comfort-care goals). In adjusted analyses, comfort care documented on the LST template prior to death was associated with significantly lower odds of hospital, ICU and ED use near the end of life. In the last 30 days of life Veterans with a comfort care goal had 44% lower odds (adjusted odds ratio 0.57; 95% CI: 0.51, 0.63) of being hospitalized.
CONCLUSION: Findings support the VA's commitment to honoring of Veterans' preferences post introduction of its LSTDI.
KEY MESSAGE: This study examines the association between comfort care goals and care near the end of life for Veteran decedents cared for after the Veterans Health Administration's Introduction of its Life-Sustaining Treatment Decisions Initiative. Findings show Veteran decedents with comfort care goals received care that appears concordant with their preferences.
Objectives: Geriatric palliative care approaches support deprescribing of antihypertensives in older nursing home (NH) residents with limited life expectancy and/or advanced dementia (LLE/AD) who are intensely treated for hypertension (HTN), but information on real-world deprescribing patterns in this population is limited. We examined the incidence and factors associated with antihypertensive deprescribing.
Design: National, retrospective cohort study.
Setting and Participants: Older Veterans with LLE/AD and HTN admitted to VA NHs in fiscal years 2009-2015 with potential overtreatment of HTN at admission, defined as receiving at least 1 antihypertensive class of medications and mean daily systolic blood pressure (SBP) <120 mm Hg.
Measures: Deprescribing was defined as subsequent dose reduction or discontinuation of an antihypertensive for =7 days. Competing risk models assessed cumulative incidence and factors associated with deprescribing.
Results: Within our sample (n = 10,574), cumulative incidence of deprescribing at 30 days was 41%. Veterans with the greatest level of overtreatment (ie, multiple antihypertensives and SBP <100 mm Hg) had an increased likelihood (hazard ratio 1.75, 95% confidence interval 1.59, 1.93) of deprescribing vs those with the lowest level of overtreatment (ie, one antihypertensive and SBP =100 to <120 mm Hg). Several markers of poor prognosis (ie, recent weight loss, poor appetite, dehydration, dependence for activities of daily living, pain) and later admission year were associated with increased likelihood of deprescribing, whereas cardiovascular risk factors (ie, diabetes, congestive heart failure, obesity), shortness of breath, and admission source from another NH or home/assisted living setting (vs acute hospital) were associated with decreased likelihood.
Conclusions and Implications: Real-world deprescribing patterns of antihypertensives among NH residents with HTN and LLE/AD appear to reflect variation in recommendations for HTN treatment intensity and individualization of patient care in a population with potential overtreatment. Factors facilitating deprescribing included treatment intensity and markers of poor prognosis. Comparative effectiveness and safety studies are needed to guide clinical decisions around deprescribing and HTN management.
CONTEXT: Children with life-shortening serious illnesses and medically complex care needs are often cared for by their families at home. Little, however, is known about what aspects of pediatric palliative and hospice care in the home setting (PPHC@Home) families value the most.
OBJECTIVE: To explore how parents rate and prioritize domains of PPHC@Home as the first phase of a larger study that developed a parent-reported measure of experiences with PPHC@Home.
METHODS: Twenty domains of high-value PPHC@Home, derived from the National Consensus Project's Guidelines for Quality Palliative Care, the literature, and a stakeholder panel, were evaluated. Using a discrete choice experiment, parents provided their ratings of the most and least valued PPHC@Home domains. We also explored potential differences in how subgroups of parents rated the domains.
RESULTS: Forty-seven parents participated. Overall, highest-rated domains included Physical Aspects of Care: Symptom Management, Psychological/EmotionalSupportfor the Child, and Care Coordination. Lowest-rated domains included Spiritual and Religious Aspects of Care and Cultural Aspects of Care. In exploratory analyses, parents who had other children rated the Psychological/Emotional Aspects of Care for the Sibling(s) domain significantly higher than parents who did not have other children (P=0.02). Furthermore, bereaved parents rated the CaregiverSupportat the End of Life domain significantly higher than parents who were currently caring for their child (P=0.04). No other significant differences in domain ratings were observed.
CONCLUSIONS: Knowing what parents value most about PPHC@Home provides the foundation for further exploration and conversation about priority areas for resource allocation and care improvement efforts.
BACKGROUND/OBJECTIVES: Specialty palliative care for hospitalized patients with dementia is widely recommended and may improve outcomes, yet rates of consultation remain low. We sought to describe hospitalists' decision-making regarding palliative care consultation for patients with dementia.
DESIGN: Descriptive qualitative study.
SETTING: Seven hospitals within a national nonprofit health system.
PARTICIPANTS: Hospitalist physicians.
MEASUREMENTS: Individual semistructured interviews. We used thematic analysis to explore factors that influence hospitalists' decision to consult palliative care for patients with dementia.
RESULTS: A total of 171 hospitalists were eligible to participate, and 28 (16%) were interviewed; 17 (61%) were male, 16 (57%) were white, and 18 (64%) were in practice less than 10 years. Overall, hospitalists' decisions to consult palliative care for patients with dementia were influenced by multiple factors across four themes: patient, family caregiver, hospitalist, and organization. Consultation was typically only considered for patients with advanced disease, particularly those receiving aggressive care or with family communication needs (navigating conflicts around goals of care and improving disease and prognostic understanding). Hospitalists' limited time and, for some, a lack of confidence in palliative care skills were strong drivers of consultation. Palliative care needs notwithstanding, most hospitalists would not request consultation if they perceived families would be resistant to it or had limited availability or involvement in caregiving. Additional barriers to referral at the organization level included a hospital culture that conflated palliative and end-of-life care and busy palliative care teams at some hospitals.
CONCLUSION: Hospitalists described a complex consultation decision process for involving palliative care specialists in the care of patients with dementia. Systematic identification of hospitalized patients with dementia most likely to benefit from palliative care consultation and strategies to overcome modifiable family and organization barriers are needed.
Background: Lung transplant patients experience significant physical symptoms and psychological stress that affect their quality of life. Palliative care is an interdisciplinary specialty associated with improved symptom management and enhanced quality of life. Little, however, is known about the palliative care needs of lung transplant patients and the role it plays in their care.
Aim: The aim of this integrative review was to synthesize the literature describing the palliative care needs, the current role, and factors influencing the integration of palliative care in the care of lung transplant patients.
Design/Data Sources: We searched PubMed, Scopus, CINAHL, and Embase to identify English-language, primary studies focused on palliative care in adult lung transplantation. Study quality was evaluated using Strengthening the Report of Observational studies in Epidemiology and Consolidated Criteria for Reporting Qualitative Research criteria.
Results: Seven articles were included in the review. Most were single-center, descriptive studies. Two studies used qualitative and 5 used quantitative methodologies. Collectively, these studies suggest that palliative care is typically consulted for physical and psychological symptom management, although consultation is uncommon and often occurs late in the lung transplant process. We found no studies that systematically assessed palliative needs. Misperceptions about palliative care, communication challenges, and unrealistic patient/family expectations are identified barriers to the integration. While limited, evidence suggests that palliative care can be successfully integrated into lung transplant patient management.
Conclusions: Empirical literature about palliative care in lung transplantation is sparse. Further research is needed to define the needs and opportunities for integration into the care of these patients.
There is a growing recognition of significant, unmet palliative care needs in nursing facilities, yet limitations in the workforce limit access to palliative care services. Attention to palliation is particularly important when there are efforts to reduce hospitalizations to help ensure there are no unintended harms associated with treating residents in place. A specialized palliative care registered nurse (PCRN) role was developed as part of the OPTIMISTIC (Optimizing Patient Transfers, Impacting Medical quality, and Improving Symptoms: Transforming Institutional Care) program, a federally funded project to reduce potentially avoidable hospitalizations. Working in collaboration with existing clinical staff and medical providers, the PCRN focuses on managing symptoms, advance care planning, achieving goal concordant care, and promoting quality of life. The PCRN serves as a resource for families through education and support. The PCRN also provides education and mentorship to staff to increase their comfort, knowledge, and skills with end-of-life care. The goals of this article are to provide an overview of the PCRN role and its implementation in nursing facilities and describe core functions that are transferrable to other contexts.
OBJECTIVES: Continuation of aspirin for secondary prevention in persons with limited life expectancy (LLE) is controversial. We sought to determine the incidence and predictors of aspirin discontinuation in veterans with LLE and/or advanced dementia (LLE/AD) who were taking aspirin for secondary prevention at nursing home admission, stratified by whether their limited prognosis (LP) was explicitly documented at admission.
DESIGN: Retrospective cohort study using linked Veterans Affairs (VA) and Medicare clinical/administrative data and Minimum Data Set resident assessments.
SETTING: All VA nursing homes (referred to as community living centers [CLCs]) in the United States.
PARTICIPANTS: Older (=65 y) CLC residents with LLE/AD, admitted for 7 days or longer in fiscal years 2009 to 2015, who had a history of coronary artery disease and/or stroke/transient ischemic attack, and used aspirin within the first week of CLC admission (n = 13 844).
MEASUREMENTS: The primary dependent variable was aspirin discontinuation within the first 90 days after CLC admission, defined as 14 consecutive days of no aspirin receipt. Independent variables included an indicator for explicit documentation of LP, sociodemographics, environment of care characteristics, cardiovascular risk factors, bleeding risk factors, individual markers of poor prognosis (eg, cancer, weight loss), and facility characteristics. Fine and Gray subdistribution hazard models with death as a competing risk were used to assess predictors of discontinuation.
RESULTS: Cumulative incidence of aspirin discontinuation was 27% (95% confidence interval [CI] = 26%-28%) in the full sample, 34% (95% CI = 33%-36%) in residents with explicit documentation of LP, and 24% (95% CI = 23%-25%) in residents with no such documentation. The associations of independent variables with aspirin discontinuation differed in residents with vs without explicit LP documentation at admission.
CONCLUSION: just over one-quarter of patients discontinued aspirin, possibly reflecting the unclear role of aspirin in end of life among prescribers. Future research should compare outcomes of aspirin deprescribing in this population.
RATIONALE: Admissions to intensive care units (ICUs) are common during terminal hospitalizations, but little is known about how ICU care affects the end-of-life experience for patients dying in hospitals and their families.
OBJECTIVES: We measured the association between ICU care during terminal hospitalization and family ratings of end-of-life care for patients who died in 106 Veterans Affairs hospitals from 2010 to 2016.
METHODS: Patients were divided into four categories: no ICU care, ICU-only care, mixed care (died outside ICU), and mixed care (died in ICU). Multivariable linear probability models were adjusted for patient and hospital characteristics. Patients receiving mixed care were also analyzed based on percentage of time in ICU.
MEASUREMENTS AND MAIN RESULTS: Of 57,550 decedents, 28,062 (48.8%) had a survey completed by a family member or close contact. In adjusted models, ICU-only care was associated with more frequent optimal ratings than no ICU care, including overall excellent care (56.6% vs. 48.1%, p<0.001), care consistent with preferences (78.7% vs. 72.4%, p<0.001), and having pain controlled (51.3% vs. 46.7%, p<0.001). Among patients with mixed care, increasing ICU time was associated with higher ratings on these same measures (all p<0.001 for comparisons of those spending >75% time in ICU vs. <= 25% time).
CONCLUSIONS: Among hospital decedents, ICU care was associated with higher family ratings of quality of end-of-life care than ward care. Reducing ICU use among hospital decedents may not improve end-of-life quality, and efforts to understand how ICU care improves end-of-life quality could help provide better care outside ICUs.
BACKGROUND: Despite recommendations to integrate palliative care into nursing home care, little is known about the most effective ways to meet this goal.
OBJECTIVE: To examine the characteristics and effectiveness of nursing home interventions that incorporated multiple palliative care domains (eg, physical aspects of care-symptom management, and ethical aspects-advance care planning).
DESIGN: Systematic review.
METHODS: We searched MEDLINE via PubMed, Embase, CINAHL, and Cochrane Library's CENTRAL from inception through January 2019. We included all randomized and nonrandomized trials that compared palliative care to usual care and an active comparator. We assessed the type of intervention, outcomes, and the risk of bias.
RESULTS: We screened 1167 records for eligibility and included 13 articles. Most interventions focused on staff education and training strategies and on implementing a palliative care team. Many interventions integrated advance care planning initiatives into the intervention. We found that palliative care interventions in nursing homes may enhance palliative care practices, including processes to assess and manage pain and symptoms. However, inconsistent outcomes and high or unclear risk of bias among most studies requires results to be interpreted with caution.
CONCLUSIONS AND IMPLICATIONS: Heterogeneity in methodology, findings, and study bias within the existing literature revealed limited evidence for nursing home palliative care interventions. Findings from a small group of diverse clinical trials suggest that interventions enhanced nursing home palliative care and improved symptom assessment and management processes.
OBJECTIVES: Hearing and visual sensory loss is prevalent among older adults and may impact the quality of healthcare they receive. Few studies have examined sensory loss and end-of-life (EOL) care quality. Our aim was to describe hearing and vision loss and their associations with the quality of EOL care and family perception of care in the last 30 days of life among a national sample of veteran decedents.
DESIGN: Retrospective medical record review and Bereaved Family Survey (BFS).
SETTING: Veterans Affairs (VA) Medical Centers (N = 145).
PARTICIPANTS: Medical record review of all veterans who died in an inpatient VA Medical Center between October 2012 and September 2017 (N = 96 424). Survey results included 42 428 individuals.
MEASUREMENTS: Three indicators of high-quality EOL care were measured: palliative consultation in the last 90 days of life, death in a non-acute setting, and contact with a chaplain. The BFS reflects a global evaluation of quality of EOL care; pain and posttraumatic stress disorder management; and three subscales characterizing perceptions regarding communication, emotional and spiritual support, and information about death benefits in the last month of life.
RESULTS: In adjusted models, EOL care quality indicators and BFS outcomes for veterans with hearing loss were similar to those for veterans without hearing loss; however, we noted slightly lower scores for pain management and less satisfaction with communication. Veterans with vision loss were less likely to have received a palliative care consult or contact with a chaplain than those without vision loss. Although BFS respondents for veterans with vision loss were less likely than respondents for veterans without vision loss to report excellent overall care and satisfaction with emotional support, other outcomes did not differ.
CONCLUSION: In general, the VA is meeting the EOL care needs of veterans with hearing and vision loss through palliative care practices.
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.
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.
Many of America's Veterans have unique medical and psychosocial needs related to their military service. Since most medical care received by Veterans occurs outside of the Department of Veterans Affairs (VA) health care system, it is imperative that all medical providers have a working understanding of the unique needs of Veterans and some of the many programs and services available to Veterans through the VA. This article, created by an interdisciplinary team of palliative care and hospice providers who care for Veterans throughout the country, seeks to improve the comfort with which non-VA clinicians care for Veterans while increasing knowledge about programs for which Veterans might qualify through the VA.
BACKGROUND/OBJECTIVES: The Optimizing Patient Transfers, Impacting Medical Quality, Improving Symptoms: Transforming Institutional Care (OPTIMISTIC) project is a successful, multicomponent demonstration project to reduce potentially avoidable hospitalizations of long-stay nursing facility residents. Systematic advance care planning (ACP) is a core component of the intervention, based on research suggesting ACP is associated with decreased hospitalizations of nursing facility residents. The purpose of this study was to describe associations between ACP documentation resulting from the OPTIMISTIC intervention and hospitalizations.
DESIGN: Specially trained project nurses were embedded in 19 nursing facilities and systematically engaged in ACP as part of a larger demonstration project.
PARTICIPANTS: Residents (n = 1482) enrolled in the demonstration project for a minimum of 30 days between January 1, 2015, and June 30, 2016.
MEASUREMENTS: ACP status: (1) Physician Orders for Scope of Treatment (POST) comfort measures or do not hospitalize (DNH) orders; (2) ACP orders with no hospitalization limit (eg, code status only); and (3) no ACP (potentially avoidable and all-cause hospitalizations per 1000 resident days).
RESULTS: Residents with POST comfort measures/DNH orders (33.2% or n = 493) were less likely than residents with no ACP (14.7% or n = 218) to experience a potentially avoidable hospitalization (P = .001) or all-cause hospitalization (P = .001). These differences became statistically nonsignificant after adjusting for age, functional status, and cognitive functioning.
CONCLUSION: In this successful multicomponent demonstration project to reduce potentially avoidable hospitalizations, ACP outcomes were not associated with hospitalization rates of nursing facility residents after adjusting for resident characteristics. These findings highlight the challenge of measuring the contributions of individual components of complex, multicomponent interventions. Associations between lower hospitalization rates and ACP completion may be influenced by contextual factors, such as clinical expertise and resources to manage acute conditions leading to hospitalization, in addition to interventions to increase ACP.
CONTEXT: The Bereaved Family Survey (BFS) is used to evaluate the quality of end-of-life (EOL) care in VA inpatient settings. The BFS consists of a global Performance Measure (BFS-PM) and three factors that relate to specific aspects of EOL care.
OBJECTIVE: The purpose of this study was to identify empirically-based target scores on each BFS factor that are most strongly related to a rating of "excellent" on the BFS-PM.
METHODS: We conducted a cross-sectional analysis of BFS and Veteran clinical data from January 2012 to January 2016. Logistic regression models were constructed for each potential cut-point on the three BFS factors and accounted for facility case-mix and nonresponse bias. Model fit was assessed primarily using the Liu Index, Bayesian Information Criterion (BIC) and classification accuracy values.
RESULTS: Our analytic sample included 40,180 Veterans whose next-of-kin completed a BFS. The mean BFS response rate across study years was 58%. A score of 14 or higher on the Respectful Care and Communication factor (range 0-15) had the lowest BIC (121355) and highest percent correctly classified (81.2%). The Emotional and Spiritual Support factor (range 0-9) had an optimal score of 8 or higher (BIC=133685; % correctly classified=77.1%). An optimal cut-point on the Benefits factor was not identified.
CONCLUSION: The identification of data-driven targets make BFS factor scores more useful to clinicians and administrators focused on improving quality of EOL care in their facilities. Our results lend support for prioritizing quality improvement efforts related to respectful care and communication.
PURPOSE: Several studies have identified differences in end-of-life (EOL) care between urban and rural areas, yet little is known about potential differences in care processes or family evaluations of care. The purpose of this study was to examine the relationship between rurality of residence and quality of EOL care within the Veterans Affairs health care system.
METHODS: This study was a retrospective, cross-sectional analysis of 126,475 veterans who died from October 2009 through September 2016 in inpatient settings across 151 facilities. Using unadjusted and adjusted logistic regression, we compared quality of EOL care between urban and rural veterans using family evaluations of care and 4 quality of care indicators for receipt of (1) palliative care consult, (2) a chaplain visit, (3) death in an inpatient hospice unit, and (4) bereavement support.
FINDINGS: Veterans from rural areas had lower odds of dying in an inpatient hospice unit compared to veterans from urban areas, before and after adjustment (large rural OR 0.73, 95% CI: 0.70-0.77; P < .001, small rural OR 0.81, 95% CI: 0.77-0.86; P < .001, isolated rural OR 0.87, 95% CI: 0.81-0.93; P < .001). Differences in comparisons of other quality of care indicators were small and of mixed significance. No significant differences were found in family ratings of care in fully adjusted models.
CONCLUSION: Receipt of some EOL quality indicators differed with urban-rural residence for some comparisons. However, family ratings of care did not. Our findings call for further investigation into unmeasured individual characteristics and facility processes related to rurality.
PURPOSE: Veterans with advanced cancer can receive hospice care concurrently with treatments such as radiation and chemotherapy. However, variations exist in concurrent care use across Veterans Affairs (VA) medical centers (VAMCs), and overall, concurrent care use is relatively rare. In this qualitative study, we aimed to identify, describe, and explain factors that influence the provision of concurrent cancer care (defined as chemotherapy or radiation treatments provided with hospice) for veterans with terminal cancer.
METHODS: From August 2015 to April 2016, we conducted six site visits and interviewed 76 clinicians and staff at six VA sites and their contracted community hospices, including community hospices (n = 16); VA oncology (n = 25); VA palliative care (n = 17); and VA inpatient hospice and palliative care units (n = 18).
RESULTS: Thematic qualitative content analysis found three themes that influenced the provision of concurrent care: (1) clinicians and staff at community hospices and at VAs viewed concurrent care as a viable care option, as it preserved hope and relationships while patient goals are clarified during transitions to hospice; and (2) the presence of dedicated liaisons facilitated care coordination and education about concurrent care; however, (3) clinicians and staff concerns about Medicare guideline compliance hindered use of concurrent care.
CONCLUSIONS: While concurrent care is used by a small number of veterans with advanced cancer, VA staff valued having the option available and as a bridge to hospice. Hospice staff felt concurrent care improved care coordination with VAMCs, but use may be tempered due to concerns related to Medicare compliance.