Cancer care in the United States: identifying end-of-life cohorts.
Ontology highlight
ABSTRACT:
SUBMITTER: Berke EM
PROVIDER: S-EPMC2966835 | biostudies-other | 2009 Feb
REPOSITORIES: biostudies-other
Publications
Cancer care in the United States: identifying end-of-life cohorts.
Berke Ethan M EM Smith Tenbroeck T Song Yunjie Y Halpern Michael T MT Goodman David C DC
Journal of palliative medicine 20090201 2
<h4>Objectives</h4>End-of-life care is increasingly recognized as an important part of cancer management for many patients. Current methods to measure end-of-life care are limited by difficulties in identifying cancer cohorts with administrative data. We examined several techniques of identifying end-of-life cancer cohorts with claims data that is population-based, geographically scalable, and amenable to routine updating.<h4>Methods</h4>Using Medicare claims for patients 65 years of age and old ...[more]
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Project description:BackgroundCulture shapes how people understand illness and death, but few studies examine whether acculturation influences patients' end-of-life treatment preferences and medical care.Methods and findingsIn this multi-site, prospective, longitudinal cohort study of terminally-ill cancer patients and their caregivers (n?=?171 dyads), trained interviewers administered the United States Acculturation Scale (USAS). The USAS is a 19-item scale developed to assess the degree of "Americanization" in first generation or non-US born caregivers of terminally-ill cancer patients. We evaluated the internal consistency, concurrent, criterion, and content validity of the USAS. We also examined whether caregivers' USAS scores predicted patients' communication, treatment preferences, and end-of-life medical care in multivariable models that corrected for significant confounding influences (e.g. education, country of origin, English proficiency). The USAS measure was internally consistent (Cronbach ??=?0.98); and significantly associated with US birthplace (r?=?0.66, P<0.0001). USAS scores were predictive of patients' preferences for prognostic information (AOR?=?1.31, 95% CI:1.00-1.72), but not comfort asking physicians' questions about care (AOR 1.23, 95% CI:0.87-1.73). They predicted patients' preferences for feeding tubes (AOR?=?0.68, 95% CI:0.49-0.99) and wish to avoid dying in an intensive care unit (AOR?=?1.36, 95% CI:1.05-1.76). Scores indicating greater acculturation were also associated with increased odds of patient participation in clinical trials (AOR?=?2.20, 95% CI:1.28-3.78), compared with lower USAS scores, and greater odds of patients receiving chemotherapy (AOR?=?1.59, 95% CI:1.20-2.12).ConclusionThe USAS is a reliable and valid measure of "Americanization" associated with advanced cancer patients' end-of-life preferences and care. USAS scores indicating greater caregiver acculturation were associated with increased odds of patient participation in cancer treatment (chemotherapy, clinical trials) compared with lower scores. Future studies should examine the effects of acculturation on end-of-life care to identify patient and provider factors that explain these effects and targets for future interventions to improve care (e.g., by designing more culturally-competent health education materials).
| S-EPMC3594172 | biostudies-literature
Project description:BACKGROUND:End-of-life care is a prominent consideration in patients on maintenance dialysis, especially when death appears imminent and quality of life is poor. To date, examination of race- and ethnicity-associated disparities in end-of-life care for patients with ESRD has largely been restricted to comparisons of white and black patients. METHODS:We performed a retrospective national study using United States Renal Data System files to determine whether end-of-life care in United States patients on dialysis is subject to racial or ethnic disparity. The primary outcome was a composite of discontinuation of dialysis and death in a nonhospital or hospice setting. RESULTS:Among 1,098,384 patients on dialysis dying between 2000 and 2014, the primary outcome was less likely in patients from any minority group compared with the non-Hispanic white population (10.9% versus 22.6%, P<0.001, respectively). We also observed similar significant disparities between any minority group and non-Hispanic whites for dialysis discontinuation (16.7% versus 31.2%), as well as hospice (10.3% versus 18.1%) and nonhospital death (34.4% versus 46.4%). After extensive covariate adjustment, the primary outcome was less likely in the combined minority group than in the non-Hispanic white population (adjusted odds ratio, 0.55; 95% confidence interval, 0.55 to 0.56; P<0.001). Individual minority groups (non-Hispanic Asian, non-Hispanic black, non-Hispanic Native American, and Hispanic) were significantly less likely than non-Hispanic whites to experience the primary outcome. This disparity was especially pronounced for non-Hispanic Native American and Hispanic subgroups. CONCLUSIONS:There appear to be substantial race- and ethnicity-based disparities in end-of-life care practices for United States patients receiving dialysis.
| S-EPMC6115657 | biostudies-literature
Project description:Importance:Overall, 1 of 5 decedents in the United States is admitted to an intensive care unit (ICU) before death. Objective:To describe structures, processes, and variability of end-of-life care delivered in ICUs in the United States. Design, Setting, and Participants:This nationwide cohort study used data on 16 945 adults who were cared for in ICUs that participated in the 68-unit ICU Liberation Collaborative quality improvement project from January 2015 through April 2017. Data were analyzed between August 2018 and June 2019. Main Outcomes and Measures:Published quality measures and end-of-life events, organized by key domains of end-of-life care in the ICU. Results:Of 16 945 eligible patients in the collaborative, 1536 (9.1%) died during their initial ICU stay. Of decedents, 654 (42.6%) were women, 1037 (67.5%) were 60 years or older, and 1088 (70.8%) were identified as white individuals. Wide unit-level variation in end-of-life care delivery was found. For example, the median unit-stratified rate of cardiopulmonary resuscitation avoidance in the last hour of life was 89.5% (interquartile range, 83.3%-96.1%; range, 50.0%-100%). Median rates of patients who were pain free and delirium free in last 24 hours of life were 75.1% (interquartile range, 66.0%-85.7%; range, 0-100%) and 60.0% (interquartile range, 43.7%-85.2%; range, 9.1%-100%), respectively. Ascertainment of an advance directive was associated with lower odds of cardiopulmonary resuscitation in the last hour of life (odds ratio, 0.70; 95% CI, 0.49-0.99; P = .04), and a documented offer or delivery of spiritual support was associated with higher odds of family presence at the time of death (odds ratio, 1.95; 95% CI, 1.37-2.77; P < .001). Death in a unit with an open visitation policy was associated with higher odds of pain in the last 24 hours of life (odds ratio, 2.21; 95% CI, 1.15-4.27; P = .02). Unsupervised cluster analysis revealed 3 mutually exclusive unit-level patterns of end-of-life care delivery among 63 ICUs with complete data. Cluster 1 units (14 units [22.2%]) had the lowest rate of cardiopulmonary resuscitation avoidance but achieved the highest pain-free rate. Cluster 2 (25 units [39.7%]) had the lowest delirium-free rate but achieved high rates of all other end-of-life events. Cluster 3 (24 units [38.1%]) achieved high rates across all favorable end-of-life events. Conclusions and Relevance:In this study, end-of-life care delivery varied substantially among ICUs in the United States, and the patterns of care observed suggest that units can be characterized as higher and lower performing. To achieve optimal care for patients who die in an ICU, future research should target unit-level variation and disseminate the successes of higher-performing units.
| S-EPMC6991207 | biostudies-literature
Project description:Background: The end-of-life period is a crucial time in lung cancer care. To have a better understanding of the racial-ethnic disparities in health care expenditures, access, and quality, we evaluated these disparities specifically in the end-of-life period for patients with lung cancer in the U.S.Materials and methods: We used the Surveillance, Epidemiology, and End Results (SEER)-Medicare database to analyze characteristics of lung cancer care among those diagnosed between the years 2000 and 2011. Linear and logistic regression models were constructed to measure racial-ethnic disparities in end-of-life care cost and utilization among non-Hispanic (NH) Asian, NH black, Hispanic, and NH white patients while controlling for other risk factors such as age, sex, and SEER geographic region.Results: Total costs and hospital utilization were, on average, greater among racial-ethnic minorities compared with NH white patients in the last month of life. Among patients with NSCLC, the relative total costs were 1.27 (95% confidence interval [CI], 1.21-1.33) for NH black patients, 1.36 (95% CI, 1.25-1.49) for NH Asian patients, and 1.21 (95% CI, 1.07-1.38) for Hispanic patients. Additionally, the odds of being admitted to a hospital for NH black, NH Asian, and Hispanic patients were 1.22 (95% CI, 1.15-1.30), 1.47 (95% CI, 1.32-1.63), and 1.18 (95% CI, 1.01-1.38) times that of NH white patients, respectively. Similar results were found for patients with SCLC.Conclusion: Minority patients with lung cancer have significantly higher end-of-life medical expenditures than NH white patients, which may be explained by a greater intensity of care in the end-of-life period.Implications for practice: This study investigated racial-ethnic disparities in the cost and utilization of medical care among lung cancer patients during the end-of-life period. Compared with non-Hispanic white patients, racial-ethnic minority patients were more likely to receive intensive care in their final month of life and had statistically significantly higher end-of-life care costs. The findings of this study may lead to a better understanding of the racial-ethnic disparities in end-of-life care, which can better inform future end-of-life interventions and help health care providers develop less intensive and more equitable care, such as culturally competent advanced care planning programs, for all patients.
| S-EPMC6964141 | biostudies-literature
Project description:Hospitals vary substantially in their end-of-life (EOL) treatment intensity. It is unknown if patterns of EOL treatment intensity are consistent across conditions.To explore the relationship between hospitals' cancer- and non-cancer-specific EOL treatment intensity.We conducted a retrospective cohort analysis of Pennsylvania acute care hospital admissions for either cancer or congestive heart failure (CHF) and/or chronic obstructive pulmonary disease (COPD) between 2001 and 2007, linked to vital statistics through 2008. We calculated Bayes's shrunken case-mix standardized (observed-to-expected) ratios of intensive care and life-sustaining treatment use among two EOL cohorts: those prospectively identified at high probability of dying on admission and those retrospectively identified as terminal admissions (decedents). We then summed these to create a hospital-specific prospective and retrospective overall EOL treatment intensity index for cancer vs. CHF/COPD.The sample included 207,523 admissions with 15% or greater predicted probability of dying on admission among 172,041 unique adults and 120,372 terminal admissions at 166 hospitals; these two cohorts overlapped by 52,986 admissions. There was substantial variation between hospitals in their standardized EOL treatment intensity ratios among cancer and CHF/COPD admissions. Within hospitals, cancer- and CHF/COPD-specific standardized EOL treatment intensity ratios were highly correlated for intensive care unit (ICU) admission (prospective ? = 0.81; retrospective ? = 0.78), ICU lengths of stay (? = 0.76; 0.64), mechanical ventilation (? = 0.73; 0.73), and hemodialysis (? = 0.60; 0.71) and less highly correlated for tracheostomy (? = 0.43; 0.53) and gastrostomy (? = 0.29; 0.30). Hospitals' overall EOL intensity index for cancer and CHF admissions were correlated (prospective ? = 0.75; retrospective ? = 0.75) and had equal group means (P-value = 0.631; 0.699).Despite substantial difference between hospitals in EOL treatment intensity, within-hospital homogeneity in EOL treatment intensity for cancer- and non-cancer populations suggests the existence of condition-insensitive institutional norms of EOL treatment.
| S-EPMC4329285 | biostudies-other
Project description:ObjectivesTo compare the delivery of end of life care given to US Medicare beneficiaries in hospital by internal medicine physicians with Republican versus Democrat political affiliations.DesignRetrospective observational study.SettingUS Medicare.ParticipantsRandom sample of Medicare beneficiaries, who were admitted to hospital in 2008-12 with a general medical condition, and died in hospital or shortly thereafter.Main outcome measuresTotal inpatient spending, intensive care unit use, and intensive end of life treatments (eg, mechanical ventilation and gastrostomy tube insertion) among patients dying in hospital, and hospice referral among patients discharged but at high predicted risk of 30 day mortality after discharge. Physicians were categorized as Democrat, Republican, or non-donors, using federal political contribution data.ResultsAmong 1?480?808 patients, 93?976 (6.3%) were treated by 1523 Democratic physicians, 58?876 (4.0%) by 768 Republican physicians, and 1?327?956 (89.6%) by 23?627 non-donor physicians. Patient demographics and clinical characteristics were similar between groups. Democrat physicians were younger, more likely to be female, and more likely to have graduated from a top 20 US medical school than Republican physicians. Mean end of life spending, after adjustment for patient covariates and hospital specific fixed effects, was US$17?938 (£12?872; €14?612) among Democrat physicians (95% confidence interval $17?176 to $18?700) and $18?409 among Republican physicians ($17?362 to $19?456; adjusted Republican v Democrat difference, $472 (-$803 to $1747), P=0.47). Intensive end of life treatments for patients who died in hospital did not vary by physician political affiliation. The proportion of patients discharged from hospital to hospice did not vary with physician political affiliation. Among patients in the top 5% of predicted risk of death 30 days after hospital discharge, adjusted proportions of patients discharged to hospice were 15.8%, 15.0%, and 15.2% among Democrat, Republican, and non-donor physicians, respectively (adjusted difference in proportion between Republicans v Democrats, -0.8% (-2.7% to 0.9%), P=0.43).ConclusionsThis study provided no evidence that physician political affiliation is associated with the intensity of end of life care received by patients in hospital. Other treatments for politically polarised healthcare issues should be investigated.
| S-EPMC5894480 | biostudies-literature
Project description:To date, knowledge of the experiences of older adults' caregivers at the end of life has come from studies that were limited to specific diseases and so-called primary caregivers and that relied on the recollections of people in convenience samples. Using nationally representative, prospective data for 2011, we found that 900,000 community-dwelling Medicare beneficiaries ages sixty-five and older who died within the following twelve months received support from 2.3 million caregivers. Nearly nine in ten of these caregivers were unpaid. Compared to other caregivers, end-of-life caregivers provided nearly twice as many hours of care per week and, especially in the case of spousal caregivers, reported more care-related challenges. Yet older adults at the end of life were not significantly more likely than other older adults to receive caregiving funded by government, state, or private insurance. To meet the needs of older adults at the end of life, their unpaid caregivers must receive greater recognition and expanded access to supportive services.
| S-EPMC5612447 | biostudies-literature
Project description:Background and objectivesAdvance care planning (ACP) is a critical component of health care affecting the quality of later life. Responding to the increase in the older immigrant population in the United States, this empirical study explored the racial/ethnic gaps in ACP behaviors among older immigrants and examined the end-of-life (EOL) care planning and preferences of foreign-born immigrant older adults focusing on race/ethnicity, acculturation, health need factors, and enabling social factors (financial capability, public assistance, and informal supports) after controlling predisposing factors (sociodemographic characteristics).Research design and methodsUsing a subsample from the National Health and Aging Trends Study 2011 and 2012, hierarchical logistic regression models of the EOL plan and preferences were examined with 50 multiple imputation data sets (n = 232).ResultsDescriptive statistics reveal lower ACP engagement of immigrants from racial/ethnic minority groups. In logistic models, however, only Black immigrants were less likely than Whites to have EOL conversations. Among acculturation factors, age at immigration was only negatively associated with having a durable power of attorney for health, but not significantly associated with other ACP behaviors. Instead, health and social factors, primarily need in health and informal support (i.e., number of coresidents and receiving financial help from family members), were associated with different types of ACP components. Receiving public assistance (i.e., receiving Medicaid and SSI) were positively associated with EOL treatment preferences.Discussion and implicationsOlder foreign-born immigrants, in general, showed lower ACP engagement than the overall older population. Moreover, minority immigrants were lower on ACP engagement than both White immigrants. This study highlights the need for formal and informal assistance for enhancing EOL planning for older immigrants. Adding to the culturally competent approach, policy efforts should address social and health factors that accrued throughout individuals' life spans and affect older immigrants' EOL preparation and care.
| S-EPMC6561643 | biostudies-literature
Project description:ObjectivesThe purpose was to analyze trends in intensity of care at End-of-life (EOL), in two cohorts of patients with lung or pancreatic cancer.SettingWe used population-based registry data on health care utilization to describe proportions and intensity of care at EOL comparing the two cohorts (deceased in the years of 2010 and 2017 respectively) in the region of Stockholm, Sweden.Primary and secondary outcomesMain outcomes were intensity of care during the last 30 days of life; systemic anticancer treatment (SACT), emergency department (ED) visits, length of stay (LOS) > 14 days, intensive care (ICU), death at acute care hospital and lack of referral to specialized palliative care (SPC) at home. The secondary outcomes were outpatient visits, place of death and hospitalizations, as well as radiotherapy and major surgery. A multivariable logistic regression analysis was used for associations. A moderation variable was added to assess for the effect of SPC at home between the cohorts.ResultsIntensity of care at EOL increased over time between the cohorts, especially use of SACT, increased with 10%, p<0.001, (n = 102/754 = 14% to n = 236/972 = 24%), ED visits with 7%, p<0.001, (n = 25/754 = 3% to n = 100/972 = 10%) and ICU care, 2%, p = 0.04, (n = 12/754 = 2% to n = 38/972 = 4%). High intensity of care at EOL were more likely among patients with lung cancer. The difference in use of SACT between the years, was moderated by SPC, with an increase of SACT, unstandardized coefficient β; 0.87, SE = 0.27, p = 0.001, as well as the difference between the years in death at acute care hospitals, that decreased (β = 0.69, SE = 0.26, p = 0.007).ConclusionThese findings underscore an increase of several aspects regarding intensity of care at EOL, and a need for further exploration of the optimal organization of EOL care. Our results indicate fragmentation of care and a need to better organize and coordinate care for vulnerable patients.
| S-EPMC8284833 | biostudies-literature
Project description:Population ageing poses considerable challenges to the provision of quality end-of-life care. The population of the United States is increasingly diverse, making it imperative to design culturally sensitive end-of-life care interventions. We examined participants of the Health and Retirement Study, who died between 2002 and 2014, to examine racial and ethnic differences in end-of-life care utilization and end-of-life planning in the United States. Our study reveals significant disparities in end-of-life care and planning among studied groups. Findings reveal that racial and ethnic minorities are more likely to die in hospital and less likely to engage in end-of-life planning activities. The observed disparities are still significant but have been narrowing between 2002 and 2014. Efforts to reduce these differences should target both medical professionals and diverse communities to ensure that improved models of care acknowledge heterogeneous values and needs of a culturally diverse US population.
| S-EPMC6305800 | biostudies-literature