Transfusion dependence, use of hospice services, and quality of end-of-life care in leukemia.
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SUBMITTER: LeBlanc TW
PROVIDER: S-EPMC6097134 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:ImportanceApproximately 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.ObjectivesTo 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 participantsThis 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.ExposureCessation of dialysis treatment before death.Main outcomes and measuresBereaved Family Survey ratings.ResultsAmong 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 relevanceThis 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.
| S-EPMC6804019 | biostudies-literature
Project description:IntroductionHospice at home (HAH) services aim to enable patients to be cared for and die in their place of choice, if that is at home, and to achieve a 'good death'. There is a considerable range of HAH services operating in England. The published evidence focuses on evaluations of individual services which vary considerably, and there is a lack of consistency in terms of the outcome measures reported. The evidence, therefore, does not provide generalisable information, so the question 'What are the features of hospice at home service models that work, for whom, and under what circumstances?' remains unanswered. The study aims to answer this question.Methods and analysisThis is a mixed-methods study in three phases informed by realist evaluation methodology. All HAH services in England will be invited to participate in a telephone survey to enable the development of a typology of services. In the second phase, case study sites representing the different service types will collect patient data and recruit carers, service managers and commissioners to gather quantitative and qualitative data about service provision and outcomes. A third phase will synthesise and refine the results through consensus workshops.Ethics and disseminationThe first survey phase has university ethics approval and the second phase, Integrated Research Application System (IRAS) and Health Research Authority (HRA) approval (IRAS ID:205986, REC:17/LO/0880); the third phase does not require ethics approval. Dissemination will be facilitated by project coapplicants with established connections to national policy-making forums, in addition to publications, conference presentations and reports targeted to service providers and commissioners.
| S-EPMC5961564 | biostudies-literature
Project description:To date, few studies have examined end-of-life care for patients with ovarian cancer. One study documented increased hospice use among older patients with ovarian cancer from 2000 to 2005. We sought to determine whether increased hospice use was associated with less-intensive end-of-life medical care.We identified 6,956 individuals age ≥ 66 years living in SEER areas who were enrolled in fee-for-service Medicare, diagnosed with epithelial ovarian cancer between 1997 and 2007, and died as a result of ovarian cancer by December 2007. We examined changes in medical care during patients' last month of life over time.Between 1997 and 2007, hospice use increased significantly, and terminal hospitalizations decreased (both P < .001). However, during this time, we also observed statistically significant increases in intensive care unit admissions, hospitalizations, repeated emergency department visits, and health care transitions (all P ≤ .01). In addition, the proportion of patients referred to hospice from inpatient settings rose over time (P = .001). Inpatients referred to hospice were more likely to enroll in hospice within 3 days of death than outpatients (adjusted odds ratio, 1.36; 95% CI, 1.12 to 1.66).Older women with ovarian cancer were more likely to receive hospice services near death and less likely to die in a hospital in 2007 compared with earlier years. Despite this, use of hospital-based services increased over time, and patients underwent more transitions among health care settings near death, suggesting that the increasing use of hospice did not offset intensive end-of-life care.
| S-EPMC4209104 | biostudies-other
Project description:ObjectivesTo evaluate the relationship between the presence and number of restricting symptoms and number of disabilities and subsequent admission to hospice at the end of life.DesignProspective cohort study.SettingGreater New Haven, Connecticut, from March 1998 to December 2014.ParticipantsDecedents from a cohort of 754 persons aged 70 and older (N = 562).MeasurementsHospice admissions were identified primarily from Medicare claims, and 15 restricting symptoms and disability in 13 activities were assessed during monthly interviews.ResultsDuring their last year of life, 244 (43.4%) participants were admitted to hospice. The median duration of hospice was 12.5 days (interquartile range 4-43 days). Although the largest increases were observed in the last 2 months of life, the prevalence of restricting symptoms and mean number of restricting symptoms and disabilities in the preceding months were high and trending upward. During a specific month, the likelihood of hospice admission increased by 66% (adjusted hazard ratio (aHR) = 1.66, 95% confidence interval (CI) = 1.30-2.12) in the setting of any restricting symptoms, by 9% (aHR = 1.09, 95% CI = 1.05-1.12) for each additional restricting symptom, and by 10% (aHR = 1.10, 95% CI = 1.05-1.14) for each additional disability. Each additional month with any restricting symptoms increased the likelihood of hospice admission by 7% (aHR = 1.07, 95% CI = 1.01-1.13).ConclusionHospice services appear to be suitably targeted to older persons with the greatest needs at the end of life, although the short duration of hospice suggests that additional strategies are needed to better address the high burden of distressing symptoms and disability at the end of life.
| S-EPMC5777867 | biostudies-literature
Project description:BackgroundIn 2011, two national policies aiming to foster hospice services for terminal cancer patients took effect in Taiwan. The single-payer National Health Insurance of Taiwan started to reimburse full hospice services. The national hospital accreditation program, which graded all hospitals, incorporated hospice utilization in its evaluation. We assessed the impact of these national policies.MethodsA cohort of 249,394 patients aged ?18 years who died of cancer between 2008 and 2013 were identified from the National Death Registry. We retrieved utilization data of medical services and compared the health care utilization in the final month of life before and after the implementation of the new policies.ResultsAfter the policy changes, hospice utilization increased from 20.8% to 36.2%. In a multivariate analysis adjusting for patient demographics, cancer features, and hospital characteristics, hospice utilization significantly increased after 2011 (adjusted odds ratio [AOR] 2.35, p?<?.001), accompanied by a decrease in intensive care unit (ICU) admissions, invasive mechanical ventilation (IMV), and cardiopulmonary resuscitation (CPR; AORs 0.87, 0.75, and 0.80, respectively; all p?<?.001). The patients who received hospice services were significantly less likely to receive ICU admissions, IMV, and CPR (AORs 0.20, 0.12, and 0.10, respectively; all p?<?.001). Hospice utilization was associated with an adjusted net savings of U.S. $696.90 (25.2%, p?<?.001) per patient in the final month of life.ConclusionThe national policy changes fostering hospice care significantly increased hospice utilization, decreased invasive end-of-life care, and reduced the medical costs of terminal cancer patients.Implications for practiceNational policies fostering hospice care significantly increased hospice utilization, decreased invasive end-of-life care, and reduced the medical costs of terminal cancer patients.
| S-EPMC5507639 | biostudies-literature
Project description:BackgroundIn order to tackle the deficits in the provision of palliative home care, profound structural changes in the outpatient sector were introduced by law in Germany in 2007. The EPACS study was carried out (Research Accompanying the Establishment of Hospice and Palliative Care Services in Rhineland-Palatinate, Germany) to document the quality of inpatient and outpatient end-of-life care in Rhineland-Palatinate, Germany, before the implementation of these changes. With this article we focus on the study design and methods of the EPACS-Study. We further report first results regarding several aspects of outpatient end-of-life care.MethodsThe cross-sectional survey was based on a random sample of 5000 inhabitants of Rhineland-Palatinate that had died from May 25 until August 24 of the year 2008. Relatives of these randomly drawn deceased persons were interviewed by means of a written survey.ResultsThe overall response proportion considering only those questionnaires that actually were delivered (n = 3833) was 36.0%. Factors influencing participation were age, sex, and marital status. 355 (25.8%) deceased persons had used professional home care in the four weeks prior to their death, but only very few persons had used a specialised palliative home care service (n = 30; 8.5%). There was a clear gap between the need for specialised outpatient care and the actual utilisation of these services.ConclusionsSatisfaction with professional home care was relatively high, but physicians were rated less favourable than nurses. There were deficits especially with respect to physicians' communicative and supportive skills. Further analyses are necessary to provide more detailed information about quality of care in different care settings and for distinct groups. Predictors of good care, as well as obstacles to it, must be further investigated. In the long run, a follow-up survey must be conducted to compare quality of home care before and after the structural changes in Germany.
| S-EPMC2921359 | biostudies-literature
Project description:BackgroundAccess to hospice palliative care may improve quality of life, reduce the use of potentially aggressive end-of-life care and allow for death to occur outside of an acute care hospital. The aim of this study was to examine the impact of an ambulatory hospice palliative care program on end-of-life care compared to care received by a matched control group of deceased patients.MethodsThis retrospective study included patients who received hospice palliative care through the Symptom Management Program in Sudbury, Ontario, during 2012-2015. Using linked administrative health records, we defined a propensity-matched control group and derived 4 previously defined variables associated with aggressive end-of-life care (chemotherapy received in the last 2 wk of life, > 1 emergency department visit within 30 d of death, > 1 hospital admission within 30 d of death and at least 1 intensive care unit admission within 30 d of death). We also examined place of death. We measured family/caregiver satisfaction with care 3 months after the patient's death using the FAMCARE questionnaire.ResultsOf 914 eligible decedents enrolled in the Symptom Management Program, 754 (82.5%) were matched. Receiving care through the program was protective for most measures of aggressive end-of-life care (absolute risk reduction [ARR] 12.73, 95% confidence interval [CI] 12.65-12.81 for any end-of-life care outcome) and death in an acute care setting (ARR 19.89, 95% CI 19.78-20.00). Of the 450 family caregivers invited to complete the FAMCARE questionnaire, 190 (42.2%) returned completed surveys; following data linkage and matching, 96 (21.3%) were available for analysis. Satisfaction with care received within the program appeared high (mean total score 85.72/100).InterpretationProvision of hospice palliative care through this ambulatory program was associated with lower use of aggressive end-of-life care and death outside of an acute care hospital. Improving access could be expected to provide positive benefits at the individual and system level.
| S-EPMC6450796 | biostudies-literature
Project description:Background/objectivesHospice care confers well-documented benefits to patients and their families, but it is underutilized. One potential reason is inadequate family support to make end-of-life decisions and care for older adults on hospice at home. We assessed the association between amount of family support and hospice use among a population of decedents and among specific illness types.DesignProspective cohort study using the National Health and Aging Trends Study waves 2011 to 2017, linked to Medicare claims data.SettingContiguous United States.ParticipantsA total of 1,868 NHATS decedents.MeasurementsOutcome variable was 1 day or longer of hospice. Family caregiving intensity was measured by self-reported hours of care per week and number of caregivers. Covariates included probable dementia status and other demographic, clinical, and functional characteristics.ResultsAt the end of life, hours of family caregiving and numbers of helpers vary widely with individuals with dementia receiving the most hours of unpaid care (mean = 64.5 hours per week) and having 2.4 unpaid caregivers on average. In an adjusted analysis, older adults with cancer receiving 40 hours and more of unpaid care/week as compared with fewer than 6 hours per week were twice as likely to receive hospice care at the end of life (odds ratio = 2.0; 95% confidence interval = 1.0-4.1). This association was not seen among those with dementia or among decedents in general. No significant association was found between number of caregivers and hospice use at the end of life.ConclusionOlder adults at the end of life receive a high number of hours of help at the end of life, many from more than one caregiver, which may shape hospice access. Better understanding of disparities in hospice use can facilitate timely access to care for older adults with a serious illness. J Am Geriatr Soc 68:2288-2296, 2020.
| S-EPMC7718293 | biostudies-literature
Project description:ObjectiveEven though more than 25% of Americans die in nursing homes, end-of-life care has consistently been found to be less than adequate in this setting. Even for those residents on hospice, end-of-life care has been found to be problematic. This study had 2 research questions; (1) How do family members of hospice nursing home residents differ in their anxiety, depression, quality of life, social networks, perceptions of pain medication, and health compared with family members of community dwelling hospice patients? (2) What are family members' perceptions of and experiences with end-of-life care in the nursing home setting?MethodsThis study is a secondary mixed methods analysis of interviews with family members of hospice nursing home residents and a comparative statistical analysis of standard outcome measures between family members of hospice patients in the nursing home and family members of hospice patients residing in the community.ResultsOutcome measures for family members of nursing home residents were compared (n = 176) with family members of community-dwelling hospice patients (n = 267). The family members of nursing home residents reported higher quality of life; however, levels of anxiety, depression, perceptions of pain medicine, and health were similar for hospice family members in the nursing home and in the community. Lending an understanding to the stress for hospice family members of nursing home residents, concerns were found with collaboration between the nursing home and the hospice, nursing home care that did not meet family expectations, communication problems, and resident care concerns including pain management. Some family members reported positive end-of-life care experiences in the nursing home setting.ConclusionThese interviews identify a multitude of barriers to quality end-of-life care in the nursing home setting, and demonstrate that support for family members is an essential part of quality end-of-life care for residents. This study suggests that nursing homes should embrace the opportunity to demonstrate the value of family participation in the care-planning process.
| S-EPMC4177958 | biostudies-literature
Project description:ImportanceAlthough hospice use is increasing and patients in the US are increasingly dying at home, racial disparities in treatment intensity at the end of life, including hospice use, remain.ObjectiveTo examine differences between Black and White patients in end-of-life care in a population sample with well-characterized causes of death.Design, setting, and participantsThis study used data from the Reasons for Geographic and Racial Differences in Stroke (REGARDS) study, an ongoing population-based cohort study with enrollment between January 25, 2003, and October 3, 2007, with linkage to Medicare claims data. Multivariable logistic regression models were used to examine racial and regional differences in end-of-life outcomes and in stroke mortality among 1212 participants with fee-for-service Medicare who died between January 1, 2013, and December 31, 2015, owing to natural causes and excluding sudden death, with oversampling of Black individuals and residents of Southeastern states in the United States. Initial analyses were conducted in March 2019, and final primary analyses were conducted in February 2020.Main outcomes and measuresThe primary outcomes of interest were hospice use of 3 or more days in the last 6 months of life derived from Medicare claims files. Other outcomes included multiple hospitalizations, emergency department visits, and use of intensive procedures in the last 6 months of life. Cause of death was adjudicated by an expert panel of clinicians using death certificates, proxy interviews, autopsy reports, and medical records.ResultsThe sample consisted of 1212 participants (630 men [52.0%]; 378 Black individuals [31.2%]; mean [SD] age at death, 81.0 [8.6] years) of 2542 total deaths. Black decedents were less likely than White decedents to use hospice for 3 or more days (132 of 378 [34.9%] vs 385 of 834 [46.2%]; P < .001). After stratification by cause of death, substantial racial differences in treatment intensity and service use were found among persons who died of cardiovascular disease but not among patients who died of cancer. In analyses adjusted for cause of death (dementia, cancer, cardiovascular disease, and other) and clinical and demographic variables, Black decedents were significantly less likely to use 3 or more days of hospice (odds ratio [OR], 0.72; 95% CI, 0.54-0.96) and were more likely to have multiple emergency department visits (OR, 1.35; 95% CI, 1.01-1.80) and hospitalizations (OR, 1.39; 95% CI, 1.02-1.89) and undergo intensive treatment (OR, 1.94; 95% CI, 1.40-2.70) in the last 6 months of life compared with White decedents.Conclusions and relevanceDespite the increase in the use of hospice care in recent decades, racial disparities in the use of hospice remain, especially for noncancer deaths. More research is required to better understand racial disparities in access to and quality of end-of-life care.
| S-EPMC7445597 | biostudies-literature