Racial Disparities in ICU Outcomes: A Systematic Review.

OBJECTIVES: Racial disparities in the United States healthcare system are well described across a variety of clinical settings. The ICU is a clinical environment with a higher acuity and mortality rate, potentially compounding the impact of disparities on patients. We sought to systematically analyze the literature to assess the prevalence of racial disparities in the ICU. DATA SOURCES: We conducted a comprehensive search of PubMed/MEDLINE, Scopus, CINAHL, and the Cochrane Library. STUDY SELECTION: We identified articles that evaluated racial differences on outcomes among ICU patients in the United States. Two authors independently screened and selected articles for inclusion. DATA EXTRACTION: We dual-extracted study characteristics and outcomes that assessed for disparities in care (e.g., in-hospital mortality, ICU length of stay). Studies were assessed for bias using the Newcastle-Ottawa Scale. DATA SYNTHESIS: Of 1,325 articles screened, 25 articles were included (n = 751,796 patients). Studies demonstrated race-based differences in outcomes, including higher mortality rates for Black patients when compared with White patients. However, when controlling for confounding variables, such as severity of illness and hospital type, mortality differences based on race were no longer observed. Additionally, results revealed that Black patients experienced greater financial impacts during an ICU admission, were less likely to receive early tracheostomy, and were less likely to receive timely antibiotics than White patients. Many studies also observed differences in patients' end-of-life care, including lower rates on the quality of dying, less advanced care planning, and higher intensity of interventions at the end of life for Black patients. CONCLUSIONS: This systematic review found significant differences in the care and outcomes among ICU patients of different races. Mortality differences were largely explained by accompanying demographic and patient factors, highlighting the effect of structural inequalities on racial differences in mortality in the ICU. This systematic review provides evidence that structural inequalities in care persist in the ICU, which contribute to racial disparities in care. Future research should evaluate interventions to address inequality in the ICU.

Perceptions of Bereaved Caregivers and Clinicians About End-of-Life Care for Patients With Destination Therapy Left Ventricular Assist Devices.

Background Patients with left ventricular assist devices (LVADs) implanted as destination therapy may receive suboptimal preparation for and care at the end of life, but there is limited understanding of the reasons for these shortcomings. Exploring perceptions of individuals (caregivers and clinicians) who are closely involved in the end-of-life experience with patients with destination therapy LVADs can help identify key opportunities for improving care. Methods and Results We conducted semistructured qualitative interviews with 7 bereaved caregivers of patients with destination therapy LVADs and 10 interdisciplinary LVAD clinicians. Interviews explored perceptions of preparing for end of life, communicating about end of life, and providing and receiving end-of-life care, and were analyzed using a 2-step team-based inductive approach to coding and analysis. Six themes pertaining to end-of-life experiences were derived: (1) timing end-of-life discussions in the setting of unpredictable illness trajectories, (2) prioritizing end-of-life preparation and decision-making, (3) communicating uncertainty while providing support and hope, (4) lack of consensus on responsibility for end-of-life discussions, (5) perception of the LVAD team as invincible, and (6) divergent perceptions of LVAD withdrawal. Conclusions This study revealed 6 unique aspects of end-of-life care for patients with destination therapy LVADs as reported by clinicians and caregivers. Themes coalesced around communication, team-based care, and challenges unique to patients with LVADs at end of life. Programmatic changes may address some aspects, including training clinicians in LVAD-specific communication skills. Other aspects, such as standardizing the role of the palliative care team and developing practical interventions that enable timely advance care planning during LVAD care, will require multifaceted interventions.

Cardiac Implantable Devices Management in Medical Assistance in Dying (MAiD): Review and Recommendations for Cardiac Device Clinics.

The Medical Assistance in Dying (MAiD) program has been steadily expanding in Canada, and is expected to continue to do so. There are a substantial number of Canadians with pacemakers and defibrillators, many of whom are potential MAiD recipients. There is a need for review and reflection of standardisation of cardiac device management in MAiD patients, not only because of ethical concerns, but also because of the complexity of management at end of life. This document examines the status and role of cardiac devices (pacemakers and intracardiac defibrillators) and their physiologic interactions and influences during the MAiD process, and provides recommendations for their management.

Impact of mental illness on end-of-life emergency department use in elderly patients with gastrointestinal malignancies.

BACKGROUND: Elderly patients with gastrointestinal cancer and mental illness have significant comorbidities that can impact the quality of their care. We investigated the relationship between mental illness and frequent emergency department (ED) use in the last month of life, an indicator for poor end-of-life care quality, among elderly patients with gastrointestinal cancers. METHODS: We used SEER-Medicare data to identify decedents with gastrointestinal cancers who were diagnosed between 2004 and 2013 and were at least 66 years old at time of diagnosis (median age: 80 years, range: 66-117 years). We evaluated the association between having a diagnosis of depression, bipolar disorders, psychotic disorders, anxiety, dementia, and/or substance use disorders and ED use in the last 30 days of life using logistic regression models. RESULTS: Of 160,367 patients included, 54,661 (34.1%) had a mental illness diagnosis between one year prior to cancer diagnosis and death. Patients with mental illness were more likely to have > 1 ED visit in the last 30 days of life (15.6% vs. 13.3%, p < 0.01). ED use was highest among patients with substance use (17.7%), bipolar (16.5%), and anxiety disorders (16.4%). Patients with mental illness who were male, younger, non-white, residing in lower income areas, and with higher comorbidity were more likely to have multiple end-of-life ED visits. Patients who received outpatient treatment from a mental health professional were less likely to have multiple end-of-life ED visits (adjusted odds ratio 0.82, 95% confidence interval 0.78-0.87). CONCLUSIONS: In elderly patients with gastrointestinal cancers, mental illness is associated with having multiple end-of-life ED visits. Increasing access to mental health services may improve quality of end-of-life care in this vulnerable population.

Place of Death for Persons With and Without Cognitive Impairment in the United States.

BACKGROUND/OBJECTIVES: There is increasing recognition that place of death is an important component of quality of end-of-life care (EOLC) and quality of death. This study examined where older persons with and without cognitive impairment die in the United States, what factors contribute to place of death, and whether place of death influences satisfaction with EOLC. DESIGN: Cross-sectional secondary data analysis. SETTING: In-person interviews with community-dwelling proxy respondents. PARTICIPANTS: Data were collected from 1,500 proxies for deceased participants in the National Health and Aging Trends Study (NHATS), a nationally-representative sample of community-dwelling Medicare beneficiaries aged 65 and older. MEASUREMENTS: Study variables were obtained from the NHATS "last month of life" interview data. Survey weights were applied to all analyses. RESULTS: Persons with cognitive impairment (CI) most often died at home, while cognitively healthy persons (CHP) were equally likely to die at home or in a hospital. Persons with CI who utilized the Medicare Hospice Benefit were 14.5 times more likely to die at home than in a hospital, and 3.4 times more likely to die at home than a nursing home. CHP who use this benefit were over six times more likely to die at home than in a hospital, and more than twice as likely to die at home than a nursing home. Place of death for CHP was also associated with age and race. Proxies of persons with CI who died at home rated EOLC as more favorable, while proxies of CHP rated in-home and hospital care equally. CONCLUSION: Findings add to the scant literature identifying factors associated with place of death for older adults with and without CI and results suggest that place of death is a quality of care indicator for these populations. These findings may inform EOLC planning and policy-making and facilitate greater well-being at end-of-life.

End-of-Life Cost Trajectories in Cancer Patients Treated by Medicare versus the Veterans Health Administration.

BACKGROUND/OBJECTIVES: To evaluate differences in end-of-life cost trajectories for cancer patients treated through Medicare versus by the Veterans Health Administration (VA). DESIGN: A retrospective analysis of VA and Medicare administrative data from FY 2010 to 2014. We employed three-level generalized estimating equations to evaluate monthly cost trajectories experienced by patients in their last year of life, with patients nested within hospital referral region. SETTING: Care received at VA facilities or by Medicare-reimbursed providers nationwide. PARTICIPANTS: A total of 36,401 patients dying from cancer and dually enrolled in VA and Medicare. MEASUREMENTS: We evaluated trajectories for total, inpatient, outpatient, and drug costs, using the last 12 months of life. Cost trajectories were prioritized as costs are not directly comparable across Medicare and VA. Patients were assigned to be VA-reliant, Medicare-reliant or Mixed-reliant based on their healthcare utilization in the last year of life. RESULTS: All three groups experienced significantly different cost trajectories for total costs in the last year of life. Inpatient cost trajectories were significantly different between Medicare-reliant and VA-reliant patients, but did not differ between VA-reliant and Mixed-reliant patients. Outpatient and drug cost trajectories exhibited the inverse pattern: they were significantly different between VA-reliant and Mixed-reliant patients, but not between VA-reliant and Medicare-reliant patients. However, visual examination of cost trajectories revealed similar cost patterns in the last year of life among all three groups; there was a sharp rise in costs as patients approach death, largely due to inpatient care. CONCLUSION: Despite substantially different financial incentives and organization, VA- and Medicare-treated patients exhibit similar patterns of increasing end-of-life costs, largely driven by inpatient costs. Both systems require improvement to ensure quality of end-of-life care is aligned with recommended practice.

How Do Claims-Based Measures of End-of-Life Care Compare to Family Ratings of Care Quality?

OBJECTIVES: Assess whether frequently-used claims-based end-of-life (EOL) measures are associated with higher ratings of care quality. DESIGN: Retrospective cohort study. SETTING/PARTICIPANTS: Deceased fee-for-service Medicare beneficiaries with cancer who underwent chemotherapy during July 2016 to January 2017 and died within 12 months and their caregiver respondents to an after-death survey (n = 2,559). MEASUREMENTS: We examined claims-based measures of EOL care: chemotherapy 14 days or more before death; inpatient admissions, intensive care unit (ICU) use, and emergency department (ED) visits 30 days or more before death; hospice election and the timing of election before death. Primary outcomes are family ratings of "excellent" care in the last month of life and reports that hospice care began "at the right time." Associations were assessed with logistic regression, adjusted by patient characteristics. RESULTS: Family rated EOL care as excellent less often, if within 30 days before death the cancer patient had inpatient admissions (1 hospitalization = 41.5% vs 51.5% none, adjusted difference -10.1 percentage points), ICU use (38.6% for any ICU use vs 47.4% none; adjusted difference -8.8 percentage points), ED visits (41.0% 1 visit vs 51.6% no visits; adjusted difference -10.6 percentage points), or elected hospice within 7 days before death. Among hospice enrollees, family more often reported that hospice began at the right time if it started at least 7 days before death (hospice 1-2 days before death 60.2% vs hospice 7-13 days 74.9%; adjusted difference +14.7 percentage points). CONCLUSIONS: Claims-based measures of EOL care for cancer patients that reflect avoidance of hospital-based care and earlier hospice enrollment are associated with higher ratings of care quality by bereaved family members.

Quality indicators for the evaluation of end-of-life care in Germany - a retrospective cross-sectional analysis of statutory health insurance data.

BACKGROUND: The provision and quality of end-of-life care (EoLC) in Germany is inconsistent. Therefore, an evaluation of current EoLC based on quality indicators is needed. This study aims to evaluate EoLC in Germany on the basis of quality indicators pertaining to curative overtreatment, palliative undertreatment and delayed palliative care (PC). Results were compared with previous findings. METHODS: Data from a statutory health insurance provider (AOK Lower Saxony) pertaining to deceased members in the years 2016 and 2017 were used to evaluate EoLC. The main indicators were: chemotherapy for cancer patients in the last month of life, first-time percutaneous endoscopic gastrostomy (PEG) for patients with dementia in the last 3 months of life, number of hospitalisations and days spent in inpatient treatment in the last 6 months of life, and provision of generalist and specialist outpatient PC in the last year of life. Data were analysed descriptively. RESULTS: Data for 64,275 deceased members (54.3% female; 35.1% cancer patients) were analysed. With respect to curative overtreatment, 10.4% of the deceased with cancer underwent chemotherapy in the last month and 0.9% with dementia had a new PEG insertion in the last 3 months of life. The mean number of hospitalisations and inpatient treatment days per deceased member was 1.6 and 16.5, respectively, in the last 6 months of life. Concerning palliative undertreatment, generalist outpatient PC was provided for 28.0% and specialist outpatient PC was provided for 9.0% of the deceased. Regarding indicators for delayed PC, the median onset of generalist and specialist outpatient PC was 47.0 and 24.0 days before death, respectively. CONCLUSION: Compared to data from 2010 to 2014, the data analysed in the present study suggest an ongoing curative overtreatment in terms of chemotherapy and hospitalisation, a reduction in new PEG insertions and an increase in specialist PC. The number of patients receiving generalist PC remained low, with delayed onset. Greater awareness of generalist PC and the early integration of PC are recommended. TRIAL REGISTRATION: The study was registered in the German Clinical Trials Register ( DRKS00015108 ; 22 January 2019).

Assessment of the quality of end-of-life care: translation and validation of the German version of the "Care of the Dying Evaluation" (CODE-GER) - a questionnaire for bereaved relatives.

BACKGROUND: International studies indicate deficits in end-of-life care that can lead to distress for patients and their next-of-kin. The aim of the study was to translate and validate the "Care of the Dying Evaluation" (CODE) into German (CODE-GER). METHODS: Translation according to EORTC (European Organisation for Research and Treatment of Cancer) guidelines was followed by data collection to evaluate psychometric properties of CODE-GER. Participants were next-of-kin of patients who had died an expected death in two hospitals. They were invited to participate at least eight, but not later than 16 weeks after the patient's death. To calculate construct validity, the Palliative care Outcome Scale (POS) was assessed. Difficulty and perceived strain of answering the questionnaire were assessed by a numeric scale (0-10). RESULTS: Out of 1137 next-of-kin eligible, 317 completed the questionnaire (response rate: 27.9%). Data from 237 main sample participants, 38 interraters and 55 next-of-kin who participated for repeated measurement were analysed. Overall internal consistency, α = 0.86, interrater reliability, ICC (1) = 0.79, and retest-reliability, ICC (1, 2) = 0.85, were good. Convergent validity between POS and CODE-GER, r = -.46, was satisfactory. A principal component analysis with varimax rotation showed a 7-factor solution. Difficulty, M = 2.2; SD ± 2.4, and perceived strain, M = 4.1; SD ± 3.0, of completing the questionnaire were rather low. CONCLUSION: The results from the present study confirm CODE-GER as a reliable and valid instrument to assess the quality of care of the dying person. More over our study adds value to the original questionnaire by proposing a deepened analysis of obtained data. The development of seven subscales increases its potential for further surveys and research. TRIAL REGISTRATION: This study was registered retrospectively on the 25th of January 2018 at the German Clinical Trials Register ( DRKS00013916 ).

Barriers and facilitators to optimal supportive end-of-life palliative care in long-term care facilities: a qualitative descriptive study of community-based and specialist palliative care physicians' experiences, perceptions and perspectives.

OBJECTIVE: The COVID-19 pandemic has highlighted ongoing challenges to optimal supportive end-of-life care for adults living in long-term care (LTC) facilities. A supportive end-of-life care approach emphasises family involvement, optimal symptom control, multidisciplinary team collaboration and death and bereavement support services for residents and families. Community-based and palliative care specialist physicians who visit residents in LTC facilities play an important role in supportive end-of-life care. Yet, perspectives, experiences and perceptions of these physicians remain unknown. The objective of this study was to explore barriers and facilitators to optimal supportive end-of-life palliative care in LTC through the experiences and perceptions of community-based and palliative specialist physicians who visit LTC facilities. DESIGN: Qualitative study using semi-structured interviews, basic qualitative description and directed content analysis using the COM-B (capability, opportunity, motivation - behaviour) theoretical framework. SETTING: Residential long-term care. PARTICIPANTS: 23 physicians who visit LTC facilities from across Alberta, Canada, including both in urban and rural settings of whom 18 were community-based physicians and 5 were specialist palliative care physicians. RESULTS: Motivation barriers include families' lack of frailty knowledge, unrealistic expectations and emotional reactions to grief and uncertainty. Capability barriers include lack of symptom assessment tools, as well as palliative care knowledge, training and mentorship. Physical and social design barriers include lack of dedicated spaces for death and bereavement, inadequate staff, and mental health and spiritual services of insufficient scope for the population. CONCLUSION: Findings reveal that validating families' concerns, having appropriate symptom assessment tools, providing mentorship in palliative care and adapting the physical and social environment to support dying and grieving with dignity facilitates supportive, end-of-life care within LTC.

Assessment of Bereaved Caregiver Experiences of Advance Care Planning for Children With Medical Complexity.

Importance: Advance care planning (ACP) is the process of discussing values and preferences for care to help inform medical decision-making. Children with medical complexity (CMC) often have a shortened life span with an unpredictable clinical course and timing of death; however, there is a paucity of literature that describes the experience of ACP from the perspective of bereaved family caregivers of CMC. Objective: To explore the experiences of bereaved family caregivers with ACP for CMC. Design, Setting, and Participants: This qualitative study included 12 interviews with 13 bereaved family caregivers of CMC whose deaths had occurred in the 5 years before study commencement (2013-2018). Participants were recruited at a single tertiary care pediatric center; CMC were treated by the Complex Care or Long-term Ventilation clinic in Toronto, Ontario, Canada. Data were collected from July to October 2018. Thematic analysis with an inductive approach was used. Exposures: Qualitative interviews were conducted using purposive sampling of bereaved family caregivers using semistructured interviews that were recorded and transcribed. Interviews were conducted until saturation was reached. Main Outcomes and Measures: Transcripts were analyzed to create themes that characterized caregiver experiences with ACP. Results: A total of 13 family caregivers were interviewed in 12 interviews, all of whom were parents (12 [92%] women, 1 [8%] man) of a deceased child (aged 7 months to 12 years). Themes were divided in the 3 following categories, which align with the Donabedian model for health service quality: (1) structure of care, (2) ACP process, and (3) end-of-life experience. Notable subthemes for this population included the importance of accounting for parental expertise in the child's care, recurrent experiences with life-threatening events, relative shock of the timing of death, and the multiple losses that caregivers experienced. Conclusions and Relevance: In this study, parental experiences revealed that there are key aspects of the structure of the child's care, process around ACP, and end-of-life care experiences that provide important reflections on ACP that warrant future study.

A systematic intervention to improve serious illness communication in primary care: Effect on expenses at the end of life.

BACKGROUND: At a population level, conversations between clinicians and seriously ill patients exploring patients' goals and values can drive high-value healthcare, improving patient outcomes and reducing spending. METHODS: We examined the impact of a quality improvement intervention to drive better communication on total medical expenses in a high-risk care management program. We present our analysis of secondary expense outcomes from a prospective implementation trial of the Serious Illness Care Program, which includes clinician training, coaching, tools, and system interventions. We included patients who died between January 2014 and September 2016 who were selected for serious illness conversations, using the "Surprise Question," as part of implementation of the program in fourteen primary care clinics. RESULTS: We evaluated 124 patients and observed no differences in total medical expenses between intervention and comparison clinic patients. When comparing patients in intervention clinics who did and did not have conversations, we observed lower average monthly expenses over the last 6 ($6297 vs. $8,876, p = 0.0363) and 3 months ($7263 vs. $11,406, p = 0.0237) of life for patients who had conversations. CONCLUSIONS: Possible savings observed in this study are similar in magnitude to previous studies in advance care planning and specialty palliative care but occur earlier in the disease course and in the context of documented conversations and a comprehensive, interprofessional case management program. IMPLICATIONS: Programs designed to drive more, earlier, and better serious illness communication hold the potential to reduce costs. LEVEL OF EVIDENCE: Prospectively designed trial, non-randomized sample, analysis of secondary outcomes.

The Affordable Care Act's Medicaid Expansion and Impact Along the Cancer-Care Continuum: A Systematic Review.

BACKGROUND: Health reform and the merits of Medicaid expansion remain at the top of the legislative agenda, with growing evidence suggesting an impact on cancer care and outcomes. A systematic review was undertaken to assess the association between Medicaid expansion and the goals of the Patient Protection and Affordable Care Act in the context of cancer care. The purpose of this article is to summarize the currently published literature and to determine the effects of Medicaid expansion on outcomes during points along the cancer care continuum. METHODS: A systematic search for relevant studies was performed in the PubMed/MEDLINE, EMBASE, Scopus, and Cochrane databases. Three independent observers used an abstraction form to code outcomes and perform a quality and risk of bias assessment using predefined criteria. RESULTS: A total of 48 studies were identified. The most common outcomes assessed were the impact of Medicaid expansion on insurance coverage (23.4% of studies), followed by evaluation of racial and/or socioeconomic disparities (17.4%) and access to screening (14.5%). Medicaid expansion was associated with increases in coverage for cancer patients and survivors as well as reduced racial- and income-related disparities. CONCLUSIONS: Medicaid expansion has led to improved access to insurance coverage among cancer patients and survivors, particularly among low-income and minority populations. This review highlights important gaps in the existing oncology literature, including a lack of studies evaluating changes in treatment and access to end-of-life care following implementation of expansion.

Does national policy in England help deliver better and more consistent care for those at the end of life?

OBJECTIVES: To explore the extent to which national policy in end of life care in England influences and guides local practice, to ensure that care for patients over the age 75 years is of a consistently good quality. METHOD: This paper reports on phase one of a larger study and focuses its discussion on the high-level (macro) determinants emerging from the analysis. Fifteen in-depth interviews were conducted with professionals involved in the development of English policy in end of life care. RESULTS: Factors influencing the quality of end of life care were stratified into three system levels: meso, macro and micro. English national policy was reported to be an important macro-level determinant of effective outcomes, and examples were provided to demonstrate how policy was influencing practice. Yet, the complexity of the area and the range of interacting contributory factors mean the value of policy alone is hard to assess. At the macro-level, concern was voiced around: whether policy was effective in tackling rising inequity; lack of mandatory leverage to exert change relating to end of life outcomes; the impact of ongoing infrastructural change on statutory services; workforce pressures; over-reliance on acute services and continued abdication of responsibility for end of life care to medical professionals supported by the continued dominance of the medical model of care. CONCLUSIONS: The links between the existence of policy at the macro-level of the system and the effective enactment of good practice remain unclear, although strategies are suggested to help achieve greater national consistency in end of life care outcomes. Policymakers must pay attention to the following: controlling the rise in localism and its contribution to regional inequalities; the impact of continuous infrastructural change together with increasing workforce pressures; encouraging broader professional and public responsibility for recognition and care of those at the end of life.

Health Care Costs at the End of Life for Patients with Idiopathic Pulmonary Fibrosis. Evaluation of a Pilot Multidisciplinary Collaborative Interstitial Lung Disease Clinic.

Rationale: Even though idiopathic pulmonary fibrosis (IPF) is a disease with high morbidity and mortality and no cure, palliative care is rarely implemented, leading to high symptom burden and unmet care needs. In 2012, we implemented a multidisciplinary collaborative (MDC) care model linking clinic and community multidisciplinary teams to provide an early integrated palliative approach, focusing on early symptom management and advance care planning.Objectives: To evaluate the differences in resource use and associated costs of end-of-life care between patients with IPF who received early integrated palliative care and patients with IPF who received conventional treatment.Methods: Using administrative health data, we identified all patients in the Province of Alberta, Canada, who presented to a hospital with an IPF diagnosis between January 1, 2012, and December 31, 2018, and died within this time frame. We compared three groups of patients: those who received MDC care (our clinic patients), specialist care (SC; respirologist), or non-specialist care (NSC; no contact with a respiratory clinic). The primary outcomes were healthcare resource use and costs in the year before death.Results: Of 2,768 patients across the three study groups, in the last year of life, MDC patients were more than three times as likely as SC patients to have received antifibrotic therapies (odds ratio [OR], 3.0; 95% confidence interval [CI], 1.8-5.2), almost twice as likely to have received pulmonary rehabilitation (OR, 1.9; 95% CI, 1.1-3.4), and 36% more likely to have received opiates (OR, 1.4; 95% CI, 0.8-2.3). The median total healthcare costs in the last 3 months of life were approximately C$7,700 lower for MDC patients than for those receiving SC, driven primarily by fewer hospitalizations and emergency department visits. MDC patients were also less likely to die in the hospital (44.9% MDC vs. 64.9% SC vs. 66.8% NSC; P < 0.001) and had the highest rates of no hospitalization in the last year of life.Conclusions: An integrated palliative approach in IPF is associated with improvements in the quality of end-of-life care and reduction in costs. Transformation of care models is required to deliver palliative care for patients with IPF. MDC teams within such models can address the high burden of unmet needs for symptom management, advance care planning, and community support in this complex population.

Improving palliative and end-of-life care for rural and remote Australians.

Recent reports highlight an inconsistent provision of palliative and end-of-life (palliative) care across Australia, particularly in regional, rural and remote areas. Palliative care improves quality of life and the experience of dying, and all people should have equitable access to quality needs-based care as they approach and reach the end of their lives. A palliative approach to care is crucial in rural and remote Australia where there is a reliance for such care on generalist providers amid the challenges of a limited workforce, poorer access, and vast geography. This article describes the development and implementation of the Far West NSW Palliative and End-of-Life Model of Care, a systematic solution that could drive improvement in the provision of a quality palliative approach to care and support from any clinician in a timely manner, for patients, their families and carers anywhere.

Evaluation of measurement equivalence of the Family Satisfaction with the End-of-Life Care (FAMCARE): Tests of differential item functioning between Hispanic and non-Hispanic White caregivers.

OBJECTIVE: Although the psychometric properties of the Family Satisfaction with End-of-Life Care measure have been examined in diverse settings internationally; little evidence exists regarding measurement equivalence in Hispanic caregivers. The aim was to examine the psychometric properties of a short-form of the FAMCARE in Hispanics using latent variable models and place information on differential item functioning (DIF) in an existing family satisfaction item bank. METHOD: The graded form of the item response theory model was used for the analyses of DIF; sensitivity analyses were performed using a latent variable logistic regression approach. Exploratory and confirmatory factor analyses to examine dimensionality were performed within each subgroup studied. The sample included 1,834 respondents: 317 Hispanic and 1,517 non-Hispanic White caregivers of patients with Alzheimer's disease and cancer, respectively. RESULTS: There was strong support for essential unidimensionality for both Hispanic and non-Hispanic White subgroups. Modest DIF of low magnitude and impact was observed; flagged items related to information sharing. Only 1 item was flagged with significant DIF by both a primary and sensitivity method after correction for multiple comparisons: "The way the family is included in treatment and care decisions." This item was more discriminating for the non-Hispanic, White responders than for the Hispanic subsample, and was also a more severe indicator at some levels of the trait; the Hispanic respondents located at higher satisfaction levels were more likely than White non-Hispanic respondents to report satisfaction. SIGNIFICANCE OF RESULTS: The magnitude of DIF was below the salience threshold for all items. Evidence supported the measurement equivalence and use for cross-cultural comparisons of the short-form FAMCARE among Hispanic caregivers, including those interviewed in Spanish.