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      Intensive procedure preferences at the end of life (EOL) in older Latino adults with end stage renal disease (ESRD) on dialysis

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          Abstract

          Background

          Latinos in the U.S. are almost twice as likely to progress to End Stage Renal disease (ESRD) compared to non-Latino whites. Patients with ESRD on dialysis experience high morbidity, pre-mature mortality and receive intensive procedures at the end of life (EOL). This study explores intensive procedure preferences at the EOL in older Latino adults.

          Methods

          Seventy-three community-dwelling Spanish- and English-Speaking Latinos over the age of 60 with and without ESRD participated in this study. Those without ESRD ( n = 47) participated in one of five focus group sessions, and those with ESRD on dialysis ( n = 26) participated in one-on-one semi-structured interviews. Focus group and individual participants answered questions regarding intensive procedures at the EOL. Recurring themes were identified using standard qualitative content-analysis methods. Participants also completed a brief survey that included demographics, language preference, health insurance coverage, co-morbidities, Emergency Department visits and functional limitations.

          Results

          The majority of participants were of Mexican origin with mean age of 70, and there were more female participants in the non-ESRD group, compared to the ESRD dialysis dependent group. The dialysis group reported a higher number of co-morbidities and functional limitations. Nearly 69% of those in the dialysis group reported one or more emergency department visits in the past year, compared to 38% in the non-ESRD group. Primary themes centered on 1) The acceptability of a “natural” versus “invasive” procedure 2) Cultural traditions and family involvement 3) Level of trust in physicians and autonomy in decision-making.

          Conclusion

          Our results highlight the need for improved patient- and family-centered approaches to better understand intensive procedure preferences at the EOL in this underserved population of older adults.

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          Most cited references 18

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          Low health literacy associates with increased mortality in ESRD.

          Limited health literacy is common in the United States and associates with poor clinical outcomes. Little is known about the effect of health literacy in patients with advanced kidney disease. In this prospective cohort study we describe the prevalence of limited health literacy and examine its association with the risk for mortality in hemodialysis patients. We enrolled 480 incident chronic hemodialysis patients from 77 dialysis clinics between 2005 and 2007 and followed them until April 2008. Measured using the Rapid Estimate of Adult Literacy in Medicine, 32% of patients had limited (<9th grade reading level) and 68% had adequate health literacy (≥9th grade reading level). Limited health literacy was more likely in patients who were male and non-white and who had fewer years of education. Compared with adequate literacy, limited health literacy associated with a higher risk for death (HR 1.54; 95% CI 1.01 to 2.36) even after adjustment for age, sex, race, and diabetes. In summary, limited health literacy is common and associates with higher mortality in chronic hemodialysis patients. Addressing health literacy may improve survival for these patients.
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            Racial and ethnic differences in preferences for end-of-life treatment.

            Studies using local samples suggest that racial minorities anticipate a greater preference for life-sustaining treatment when faced with a terminal illness. These studies are limited by size, representation, and insufficient exploration of sociocultural covariables. To explore racial and ethnic differences in concerns and preferences for medical treatment at the end of life in a national sample, adjusting for sociocultural covariables. Dual-language (English/Spanish), mixed-mode (telephone/mail) survey. A total of 2,847 of 4,610 eligible community-dwelling Medicare beneficiaries age 65 or older on July 1, 2003 (62% response). Demographics, education, financial strain, health status, social networks, perceptions of health-care access, quality, and the effectiveness of mechanical ventilation (MV), and concerns and preferences for medical care in the event the respondent had a serious illness and less than 1 year to live. Respondents included 85% non-Hispanic whites, 4.6% Hispanics, 6.3% blacks, and 4.2% "other" race/ethnicity. More blacks (18%) and Hispanics (15%) than whites (8%) want to die in the hospital; more blacks (28%) and Hispanics (21.2%) than whites (15%) want life-prolonging drugs that make them feel worse all the time; fewer blacks (49%) and Hispanics (57%) than whites (74%) want potentially life-shortening palliative drugs, and more blacks (24%, 36%) and Hispanics (22%, 29%) than whites (13%, 21%) want MV for life extension of 1 week or 1 month, respectively. In multivariable analyses, sociodemographic variables, preference for specialists, and an overly optimistic belief in the effectiveness of MV explained some of the greater preferences for life-sustaining drugs and mechanical ventilation among non-whites. Black race remained an independent predictor of concern about receiving too much treatment [adjusted OR = 2.0 (1.5-2.7)], preference for dying in a hospital [AOR = 2.3 (1.6-3.2)], receiving life-prolonging drugs [1.9 (1.4-2.6)], MV for 1 week [2.3 (1.6-3.3)] or 1 month's [2.1 (1.6-2.9)] life extension, and a preference not to take potentially life-shortening palliative drugs [0.4 (0.3-0.5)]. Hispanic ethnicity remained an independent predictor of preference for dying in the hospital [2.2 (1.3-4.0)] and against potentially life-shortening palliative drugs [0.5 (0.3-0.7)]. Greater preference for intensive treatment near the end of life among minority elders is not explained fully by confounding sociocultural variables. Still, most Medicare beneficiaries in all race/ethnic groups prefer not to die in the hospital, to receive life-prolonging drugs that make them feel worse all the time, or to receive MV.
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              Racial and ethnic differences in end-of-life costs: why do minorities cost more than whites?

              Racial and ethnic minorities generally receive fewer medical interventions than whites, but racial and ethnic patterns in Medicare expenditures and interventions may be quite different at life's end. Based on a random, stratified sample of Medicare decedents (N = 158 780) in 2001, we used regression to relate differences in age, sex, cause of death, total morbidity burden, geography, life-sustaining interventions (eg, ventilators), and hospice to racial and ethnic differences in Medicare expenditures in the last 6 months of life. In the final 6 months of life, costs for whites average $20,166; blacks, $26,704 (32% more); and Hispanics, $31,702 (57% more). Similar differences exist within sexes, age groups, all causes of death, all sites of death, and within similar geographic areas. Differences in age, sex, cause of death, total morbidity burden, geography, socioeconomic status, and hospice use account for 53% and 63% of the higher costs for blacks and Hispanics, respectively. While whites use hospice most frequently (whites, 26%; blacks, 20%; and Hispanics, 23%), racial and ethnic differences in end-of-life expenditures are affected only minimally. However, fully 85% of the observed higher costs for nonwhites are accounted for after additionally modeling their greater end-of-life use of the intensive care unit and various intensive procedures (such as, gastrostomies, used by 10.5% of blacks, 9.1% of Hispanics, and 4.1% of whites). At life's end, black and Hispanic decedents have substantially higher costs than whites. More than half of these cost differences are related to geographic, sociodemographic, and morbidity differences. Strikingly greater use of life-sustaining interventions accounts for most of the rest.
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                Author and article information

                Contributors
                Kagonzalez@mednet.ucla.edu
                Jesus.Ulloa@ucsf.edu
                GeMoreno@mednet.ucla.edu
                OEcheverria@mednet.ucla.edu
                KCNorris@mednet.ucla.edu
                Etalamantes@ucdavis.edu
                Journal
                BMC Nephrol
                BMC Nephrol
                BMC Nephrology
                BioMed Central (London )
                1471-2369
                23 October 2017
                23 October 2017
                2017
                : 18
                Affiliations
                [1 ]ISNI 0000 0000 9632 6718, GRID grid.19006.3e, Department of Family Medicine, , David Geffen School of Medicine at University of California, Los Angeles, ; Los Angeles, CA USA
                [2 ]UCLA Family Health Center, 1920 Colorado Avenue, Santa Monica, CA 90404 USA
                [3 ]ISNI 0000 0001 2297 6811, GRID grid.266102.1, Department of Surgery, , University of California San Francisco, ; 513 Parnassus Ave, S-321, San Francisco, CA 94143 USA
                [4 ]ISNI 0000 0000 9632 6718, GRID grid.19006.3e, Robert Wood Johnson Foundation, Clinical Scholars Program, , University of California, Los Angeles, ; Los Angeles, CA USA
                [5 ]ISNI 0000 0001 0384 5381, GRID grid.417119.b, Veterans Affairs Greater Los Angeles Healthcare System, ; Los Angeles, CA USA
                [6 ]ISNI 0000 0000 9632 6718, GRID grid.19006.3e, UCLA David Geffen School of Medicine at University of California, ; 10833 Le Conte Ave # 12138, Los Angeles, CA 90095 USA
                [7 ]ISNI 0000 0000 9632 6718, GRID grid.19006.3e, Division of General Internal Medicine and Health Services Research University of California, ; 911 Broxton Avenue, Los Angeles, CA 90095 USA
                [8 ]ISNI 0000 0004 1936 9684, GRID grid.27860.3b, Division of General Internal Medicine, , University of California, Davis School of Medicine, ; 4150 V Street, Suite 2400, Sacramento, CA 95817 USA
                Article
                739
                10.1186/s12882-017-0739-7
                5654039
                29061178
                © The Author(s). 2017

                Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License ( http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver ( http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.

                Funding
                Funded by: Health Resources and Services Administration (HRSA) Institutional National Research Service Award (NRSA)
                Award ID: T32HP19001
                Award Recipient :
                Funded by: UCLA and Charles Drew University (CDU), Resource Centers for Minority Aging Research Center for Health Improvement of Minority Elderly (RCMAR/CHIME)
                Award ID: P30AG021684
                Award Recipient :
                Funded by: UCLA Clinical and Translational Science Institute (CTSI)
                Award ID: UL1TR000124
                Award Recipient :
                Funded by: National Institute on Aging (US)
                Award ID: K23 AG042961-01
                Award Recipient :
                Funded by: UCLA Resource Center for Minority Aging Research/Center for Health Improvement of Minority Elderly (RCMAR/CHIME)
                Award ID: P30AG021684
                Award Recipient :
                Funded by: VA/Robert Wood Johnson Clinical Scholars Program
                Award ID: none
                Award Recipient :
                Categories
                Research Article
                Custom metadata
                © The Author(s) 2017

                Nephrology

                renal disease, latinos, end of life, advanced care planning, dialysis, intensive procedures

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