Quality of End-of-Life Care for the Myelodysplastic Syndromes: Findings from a Large National Database

Blood ◽  
2015 ◽  
Vol 126 (23) ◽  
pp. 3287-3287
Author(s):  
Sean A. Fletcher ◽  
Angel M. Cronin ◽  
Amer M. Zeidan ◽  
Oreofe O. Odejide ◽  
Steven D. Gore ◽  
...  

Abstract Background: End-of-life (EOL) care has been shown to be more intensive for blood cancers compared to solid tumors (e.g. Hui, Cancer, 2014); however, data are sparse regarding predictors of intensive care unit (ICU) use in the last 30 days of life and hospice enrollment among patients with specific hematologic malignancies. Moreover, little is known about EOL care specifically for the myelodysplastic syndromes (MDS), which are distinguished among the blood cancers by their relative indolence in many patients and high rate of transfusion dependence. Methods: We conducted a retrospective analysis using the Surveillance Epidemiology and End Results (SEER)-Medicare database. Patients ≥ 65 years of age who had a primary diagnosis of MDS between 2006 and 2011, lived for at least 30 days after their diagnosis, and died prior to December 31, 2012 were eligible for inclusion. Outcomes were two well-established quality measures for EOL care in oncology (Earle, JCO, 2003; Keating, Cancer, 2010): ICU admission within the last 30 days of life (an indicator of poor quality), and enrollment in hospice for any length of time (an indicator of good quality). After determining their overall prevalence, we fit multivariable logistic regression models to investigate sociodemographic and clinical associations (see table) with each outcome. Results: A total of 6,955 MDS patients were eligible. Overall, 28% were admitted to the ICU in the last month of life, and 49% had enrolled in hospice. In multivariable analyses, transfusion-dependent patients were more likely to be admitted to the ICU and less likely to enroll in hospice (both p<0.001). There was no significant association with marital status or time from diagnosis to death for either outcome. Patients who died in later years had a higher prevalence of ICU admissions (p=0.05) and were more likely to enroll in hospice (p<0.001). Additional multivariable associations are shown below. *Adjusted for all variables listed as well as marital status and time from diagnosis to death Conclusions: Only about half of the MDS patients in our cohort were enrolled in hospice; however, the odds of enrollment increased over time. Interestingly, the odds of ICU admission within the last 30 days of life also increased over time, a trend that has been seen in solid tumors (e.g. Wright, JCO, 2014). As bone marrow failure in MDS can lead to reversible sepsis and the need for temporary blood pressure support, it is difficult to determine if this trend truly represents a worsening in quality of EOL care. Finally, our finding that transfusion-dependent MDS patients were less likely to receive hospice suggests that one reason for suboptimal enrollment is that the current hospice model-which largely disallows transfusions-is not meeting the specific palliative needs of this population. Table 1. Table 1. Disclosures Gore: Celgene: Consultancy, Honoraria, Research Funding. Davidoff:Celgene: Consultancy, Research Funding. Steensma:Incyte: Consultancy; Amgen: Consultancy; Celgene: Consultancy; Onconova: Consultancy.

2021 ◽  
Vol 39 (28_suppl) ◽  
pp. 31-31
Author(s):  
Laura Donovan ◽  
Donna Buono ◽  
Melissa Kate Accordino ◽  
Jason Dennis Wright ◽  
Andrew B. Lassman ◽  
...  

31 Background: GBM is associated with a poor prognosis and early death in elderly patients. Prior studies have demonstrated a high burden of hospitalization in this population. We sought to evaluate and examine trends in hospitalizations and EOL care in GBM survivors. Methods: Using SEER-Medicare linked data, we performed a retrospective observational cohort study of patients aged ≥ 65 years diagnosed with GBM from 2005-2017 who lived at least 6 months from the time of diagnosis. Aggressive EOL care was defined as: chemotherapy or radiotherapy within 14 days of death (DOD), surgery within 30 DOD, > 1 emergency department visit, ≥ 1 hospitalization or intensive care unit admission within 30 DOD; in-hospital death; or hospice enrollment ≤ 3 DOD. We evaluated age, race, ethnicity, marital status, gender, socioeconomic status, comorbidities, prior treatment and percentage of time hospitalized. Multivariable logistic regression was performed to determine factors associated with aggressive end of life care. Results: Of 5827 patients, 2269 (38.9%) survived at least 6 months. Among these, 1106 (48.7%) survived 6-12 months, 558 (24.6%) survived 12-18 months, and 605 (26.7%) survived > 18 months. Patients who survived 6-12 months had the highest burden of hospitalization and spent a median of 10.6% of their remaining life in the hospital compared to those surviving 12-18 months (5.4%) and > 18 months (3%) (P < 0.001). 10.1% of the cohort had claims for palliative care services; 49.8% of initial palliative care consults occurred in the last 30 days of life. Hospice claims existed in 83% with a median length of stay 33 days (IQR 12, 79 days). 30.1% of subjects received aggressive EOL care. Receiving chemo at any time (OR 1.510, 95% CI 1.221-1.867) and spending ≥ 20% of life in the hospital after diagnosis (OR 3.331, 95% CI 2.567-4.324) were associated with aggressive EOL care. Women (OR 0.759, 95% CI 0.624-0.922), patients with higher socioeconomic status (OR 0.533, 95% CI 0.342-0.829), and those diagnosed ≥ age 80 (OR 0.723, 95% CI 0.528-0.991) were less likely to receive aggressive EOL care. Race, ethnicity, marital status, and extent of initial resection were not associated with aggressive EOL care. Conclusions: A minority of elderly patients with GBM in the SEER-Medicare database survived ≥ 6 months; hospitalizations were common and patients spent a significant proportion of their remaining life hospitalized. Although hospice utilization was high in this cohort, 30% of patients received aggressive EOL care. Despite the aggressive nature of GBM, few patients had palliative care consults during their illness. Increased utilization of palliative care services may help reduce hospitalization burden and aggressive EOL care in this population.


2013 ◽  
Vol 31 (15_suppl) ◽  
pp. 6573-6573
Author(s):  
Philip C Higgins ◽  
Holly Gwen Prigerson

6573 Background: End-of-life (EOL) measures are limited in capturing caregiver assessment of the quality of EOL care. None include caregiver perception of patient suffering and prolongation of death. We developed and validated the Caregiver Evaluation of Quality of End-of-Life Care (CEQUEL) scale, a more comprehensive measure of caregiver-perceived quality of EOL care. Methods: Data were derived from Coping with Cancer (CwC), a multisite, prospective, longitudinal study of advanced cancer patients and their caregivers (N=275 dyads). Caregivers were assessed before and after patient deaths. CEQUEL’s factor structure was examined; reliability was evaluated using Cronbach’s α, and convergent validity by the strength of associations between CEQUEL scores and key EOL outcomes. Results: Factor analysis revealed four distinct factors: Prolongation of Death, Perceived Suffering, Shared Decision-Making, and Preparation for the Death. Each item loaded strongly on only a single factor. The 13-item CEQUEL and its subscales showed moderate to acceptable Cronbach’s α (range: 0.52-0.78). 53% of caregivers reported patients suffering more than expected. Higher CEQUEL scores were positively associated with therapeutic alliance (r=.13; p≤.05) and hospice enrollment (z=-2.09; p≤.05), and negatively associated with bereaved caregiver regret (r=-.36, p≤.001) and trauma symptoms (z=-2.06; p≤.05). Conclusions: CEQUEL is a brief, valid measure of quality of EOL care from the caregiver’s perspective. It is the first scale to include perceived suffering and prolongation of death. If validated in future work, it may prove a useful quality indicator for the delivery of EOL care and a risk indicator for poor bereavement adjustment.


2021 ◽  
Vol 39 (15_suppl) ◽  
pp. e24005-e24005
Author(s):  
Renana Barak ◽  
Einav Zagagi Yohay ◽  
Barliz Waissengrin ◽  
Ido Wolf

e24005 Background: Aggressive end-of-life (EOL) care in cancer patients, especially the administration of chemotherapy, is considered a poor-quality measure, that may divert the treatment course from its' main palliative intent. Decisions taken at EOL are more than evidence-based and often rely on cultural and personal prospects. The universal and free Israeli health care system enables the administration of active treatment without financial or regulatory barriers, even at EOL. Two major advancements in recent years were the implementation of national at-home palliative care services and the approval of targeted and immunotherapies for advanced cancers. We hypothesized that these changes will reduce the use of chemotherapy at EOL. Methods: We sampled consecutive patients treated at a tertiary oncology center who died of advanced cancers between January 2019 to August 2020, and examined the administration of oncologic treatments near EOL. Results: A total of 294 patients were included. Their median age was 67 and 147 were men, 64% (189) of the patients received oncologic treatment during the last month before death, chemotherapy was administered in nearly two-thirds of the cases, 64% (121), followed by immunotherapy (21%, 40), targeted therapy (10%, 19) and a clinical trial (5%, 9). Neither age (P = 0.4), gender (P = 0.9), performance status (P = 0.8), disease duration (P = 0.5), and type of previous oncologic treatment (P = 0.3) were associated with aggressive EOL care. Conclusions: Our data demonstrate that in the absence of any regulatory or financial limitations, an aggressive EOL care may be administered to the majority of patients, regardless of age, performance status or disease duration. Despite increasing use of immunotherapy and targeted therapies and despite its’ toxicity profile and low beneficial effect at this stage, chemotherapy remained the most commonly used type of treatment. These data call for the implementation of educational measures and appropriate universal guidelines, aiming at improving quality of treatment at the EOL, focusing on quality of life rather than the elusive potential of extending life.


2021 ◽  
pp. 154041532110289
Author(s):  
Kim L. Larson ◽  
Graziella D. Jewell ◽  
Maria Fernanda Maldonado ◽  
Morgan E. Braxton ◽  
Lee Ann Johnson

Introduction: The rezadora, a lay spiritual leader, provides support to Latino families as they provide end-of-life (EOL) care for loved ones. The purpose of this study was to learn about the work of the rezadora in Guatemala as a resource for Latinos with serious illness in the United States. Methods: An ethnographic exploratory case study was conducted during summer 2018 in rural Guatemala. We interviewed three rezadoras who resided in two villages. The study yielded two cases, the single case and the paired case, which allowed for a holistic view of how the rezadora serves the community. Results: Content and thematic analysis led to two themes: Essence of being called and Power of prayerful song. Essence of being called was represented by the prominence of the rezadora and their perpetual faith work. Power of prayerful song was characterized through the mission, customs, and the presence of the rezadora. A good death was aided by the rezadora in this context. Conclusions: As the Latino population ages in place, the need for palliative and EOL care services will increase. Lay spiritual leaders could enhance the palliative care teams in these communities and improve the quality of life for Latinos with serious illness.


Author(s):  
Marilyn Bookbinder ◽  
Romina Arceo ◽  
James T. McDaniel

This chapter provides perspectives on quality-based initiatives in the United States across healthcare settings and populations and describes their impact on patient, professional, and system outcomes. The authors discuss the need for quality improvement (QI) at end of life, QI principles, and the models, methods, and tools most frequently used. Also described are areas of national priority for improving end-of-life (EOL) care. A care-path for the end of life is used to illustrate a QI effort and the FOCUS_PDSA method and to encourage use of specific tools for improving EOL care, including respiratory distress, and a clinician assessment of EOL care using The Joint Commission (TJC) tracer methodology. The authors review the linkages between QI and practice changes in hospitals and hospices that ultimately lead to improved EOL care and close with examples of how nurses are providing leadership in the field of quality hospice and palliative care.


2020 ◽  
pp. bmjspcare-2020-002293
Author(s):  
Thomas Chalopin ◽  
Nicolas Vallet ◽  
Lotfi Benboubker ◽  
Marlène Ochmann ◽  
Emmanuel Gyan ◽  
...  

ObjectivesPatients with haematological malignancies (HM) receive more aggressive treatments near the end-of-life (EOL) than patients with solid tumours. Palliative care (PC) needs are less widely acknowledged in patients with multiple myeloma (MM) than in other HM. The main objective of our study was to describe EOL care and PC referral in a population of older patients with MM.MethodsWe retrospectively included deceased inpatients and outpatients with an MM previously diagnosed at the age of 70 and over in two tertiary centres in France. We reported EOL characteristics regarding treatments considered to be aggressive—antimyeloma therapies, hospitalisations, blood product transfusions, intensive care units (ICUs) or emergency admissions—and PC referral.ResultsWe included 119 patients. In their last month of life, 75 (63%) were hospitalised for fever, pain, asthenia, anaemia or bleeding, 49 (41%) were admitted in the emergency department and 12 (10%) in ICU, 76 (64%) still received antimyeloma therapy and 45 (38%) had at least two transfusions. Only 24 (20%) received PC intervention for pain, global care, family support, anxiety, social care or confusion. Median follow-up until death was 20 days.ConclusionsOur study found a high rate of hospitalisations and antimyeloma therapies in the last month of life. The PC referral rate was low, often once specific treatments were stopped. Our results suggest the need for more effective collaboration between PC teams and haematologists in order to respond to the specific needs of these patients and to improve their quality of care at EOL.


2006 ◽  
Vol 24 (18_suppl) ◽  
pp. 8573-8573 ◽  
Author(s):  
M. N. Neuss ◽  
J. O. Jacobson ◽  
C. Earle ◽  
C. E. Desch ◽  
K. McNiff ◽  
...  

8573 Background: Little is known about the quality of end-of-life (EOL) care provided to cancer patients, with data largely available only from administrative databases. QOPI is a practice-based system of quality self-assessment now available to any ASCO physician wishing to participate. QOPI methodology allows comparison of EOL care among practices and provides a basis for self-improvement. Methods: In Summer 2005, during the pilot phase of QOPI, several EOL questions were included in the survey instrument. Practices were requested to review the records of at least 15 patients who had died. Practice members performed standardized chart abstractions and data were entered directly on to a secure web-based application. A total of 455 charts were abstracted from 22 practices. Results: See table. Conclusion : QOPI provides an effective mechanism for collecting practice-specific EOL data. Aggregate data from the 22 QOPI pilot practices demonstrate a high level of performance compared with results reported from population-based studies. Significant variation among practices is present, representing an opportunity to improve the EOL care of cancer patients. [Table: see text] No significant financial relationships to disclose.


2018 ◽  
Vol 36 (30_suppl) ◽  
pp. 3-3 ◽  
Author(s):  
Claire Elizabeth Powers Smith ◽  
Pat Coke ◽  
Monica Kluger ◽  
Arif Kamal ◽  
Michael J. Kelley

3 Background: It is imperative to provide quality end of life (EOL) care for cancer patients. This entails minimizing aggressive measures at the EOL. Although rates of hospice utilization within the Veteran’s Health Administration have improved, chemotherapy administration and intensive care unit (ICU) admission at the EOL, indicators of aggressive care, are not clearly declining over recent years. Methods: We identified 32,665 veterans diagnosed with stage IV lung, colorectal, or pancreatic cancer who died between 2009-2016 using VA cancer registry and Corporate Data Warehouse data through a novel EOL Dashboard Tool, which has been validated at multiple VA sites. This EOL tool reports three indicators; incidence of chemotherapy use in the last 14 days of life, ICU admission in the last 30 days of life and hospice admission or consult. Change over time, 2009-2016, was assessed using a repeated measures one-way ANOVA with post hoc test for linear trend of time for individual cancers and two-way ANOVA for all cancers combined. Results: Chemotherapy use in the last 14 days of life declined from 6.8% in 2009 to 4.4% in 2016 (p < 0.05). ICU admission in the last 30 days did not change significantly, from 13.3% in 2009 to 14.7% in 2016. The exception was stage IV lung cancer patients in whom ICU admissions increased from 12.9% to 16.2% (p = 0.01). Patients utilizing hospice services increased from 32.4% to 52.6% (p < 0.01). When combined for all years in an unadjusted analysis by VA regional network (VISN), chemotherapy use ranged geographically from 4.2% to 8.1% and for ICU admission from 8.4% to 18.0%. Conclusions: While chemotherapy administration at the EOL is declining for veterans with stage IV cancer, ICU admissions are unchanged and becoming more common in stage IV lung cancer despite increasing hospice utilization. Compared to prior Medicare reports, veterans have similar rates of EOL chemotherapy use and fewer EOL ICU admissions, adding to a growing body of literature showing that despite veterans having poorer health and utilizing more medical resources, the VA performs at or above non-veteran health care institutions on end of life cancer care. There is notable geographic variation in aggressive EOL care.


2019 ◽  
Vol 37 (15_suppl) ◽  
pp. 6507-6507
Author(s):  
Garrett Wasp ◽  
Shama S Alam ◽  
Gabriel A. Brooks ◽  
Inas S Khayal ◽  
Nirav S. Kapadia ◽  
...  

6507 Background: Higher EOL treatment intensity is burdensome and has been defined as low-quality care. We explored cancer centers’ EOL quality outcomes among minority and white patients and evaluated whether minority-serving cancer centers had systematically lower EOL quality. Methods: We conducted a retrospective cohort study of Medicare beneficiaries with poor-prognosis cancers who died between April 1, 2016 and December 31 2016. We attributed patients’ EOL treatment to the cancer center where they received the preponderance of inpatient services during the last 6 months of life. We then compared age-sex-comorbidity adjusted center-level measures of EOL care (EOL chemotherapy, emergency department (ED) use, intensive care unit (ICU) admission, hospice use, life-sustaining treatment use, palliative care, and advance care planning) between minority (black, Hispanic, Asian, other) and non-Hispanic white (white) patients within the same center and across centers, grouped by concentration of minorities served (low: < 15%, medium 15-30%, and high > 30%). Results: Among 126,434 patients, 10,006 (21.4% minority) received treatment at one of 53 National Cancer Institute-designated and/or National Comprehensive Cancer Network-affiliated cancer centers. Only 4/8 quality measures had sufficient sample size to calculate a minority-specific rate for ≥10 centers. Those measures showed high within-center correlation for minority and white patients (ICU admission: r = 0.79,p < 0.001; no hospice referral: r = 0.70,p < 0.0001; life sustaining treatment: r = 0.73,p = 0.004; and palliative care: r = 0.78,p < 0.0001), but the mean adjusted rate for minority versus white patients was significantly worse for two measures: no hospice referral (40.2% v. 37.2%; p < 0.02) and life-sustaining treatments (21.8% v. 19.4%; p < 0.02). When grouped by concentration of minorities served (low/medium/high), 5/8 measures showed systematically lower quality as the concentration of minorities increased: more than 1 ED visit (6.0/8.5/7.7%; p = 0.002), ICU admission (29.1/29.7/35.1%; p = 0.0004), no hospice referral (34.3/38.7/36.8% (p = 0.005), and life sustaining treatments (14.8/16.7/17.9%; p = 0.005). Conclusions: There were systematic differences in end-of-life quality measures across US cancer centers. For many measures, quality was lower at centers that served a greater concentration of minorities. However, EOL care quality for minority and white patients was similar for most but not all measures within any given center.


2016 ◽  
Vol 35 (1) ◽  
pp. 52-59 ◽  
Author(s):  
Kara B. Dassel ◽  
Rebecca Utz ◽  
Katherine Supiano ◽  
Nancy McGee ◽  
Seth Latimer

Background: Differences in end-of-life (EOL) care preferences (eg, location of death, use of life-sustaining treatments, openness to hastening death, etc) based on hypothetical death scenarios and associated physical and/or cognitive losses have yet to be investigated within the palliative care literature. Aim: The purpose of this study was to explore the multidimensional EOL care preferences in relation to 3 different hypothetical death scenarios: pancreatic cancer (acute death), Alzheimer disease (gradual death), and congestive heart failure (intermittent death). Design: General linear mixed-effects regression models estimated whether multidimensional EOL preferences differed under each of the hypothetical death scenarios; all models controlled for personal experience and familiarity with the disease, presence of an advance directive, religiosity, health-related quality of life, and relevant demographic characteristics. Setting/Participants: A national sample of healthy adults aged 50 years and older (N = 517) completed electronic surveys detailing their multidimensional preferences for EOL care for each hypothetical death scenario. Results: The average age of the participants was 60.1 years (standard deviation = 7.6), 74.7% were female, and 66.1% had a college or postgraduate degree. Results revealed significant differences in multidimensional care preferences between hypothetical death scenarios related to preferences for location of death (ie, home vs medical facility) and preferences for life-prolonging treatment options. Significant covariates of participants’ multidimensional EOL care preferences included age, sex, health-related quality of life, and religiosity. Conclusion: Our hypothesis that multidimensional EOL care preferences would differ based on hypothetical death scenarios was partially supported and suggests the need for disease-specific EOL care discussions.


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