scholarly journals Measuring Quality of End-of-Life Care for Blood Cancers: A National Survey of Hematologic Oncologists

Blood ◽  
2015 ◽  
Vol 126 (23) ◽  
pp. 3290-3290 ◽  
Author(s):  
Oreofe O. Odejide ◽  
Angel M. Cronin ◽  
Nolan B. Condron ◽  
Sean A. Fletcher ◽  
Craig Earle ◽  
...  
Keyword(s):  
End Of Life ◽  
Conflicts Of Interest ◽  
A Priori ◽  
Poor Performance ◽  
Quality Measures ◽  
Hematologic Malignancies ◽  
National Sample ◽  
National Cohort ◽  
Eol Care

Abstract Background: Hematologic malignancies have been associated with poor performance on standard measures of quality of end-of-life (EOL) care in oncology (eg, Hui, Cancer, 2014); however, these measures were originally developed primarily for solid tumors, and they may not appropriately address EOL quality issues for patients with blood cancers. We sought to explore hematologic oncologists' perspectives regarding the acceptability of current oncology EOL quality measures, hypothesizing that they would report them to be largely unacceptable. Methods: In 2014, we mailed a 30-item survey to a national sample of hematologic oncologists randomly selected from the American Society of Hematology clinical directory. The survey was developed through focus groups (n=20) and cognitive debriefing (n=5) with hematologists whose practices focus on patients with blood cancers. In the resulting survey, we provided a list of standard EOL quality measures (Earle, JCO, 2003; Keating, Cancer, 2010; Phelps, JAMA, 2009; see table) and two novel hematology-based measures (no red cell transfusions ≤ 7 days before death, and no platelet transfusions ≤ 7 days before death) and asked "Please indicate whether or not you feel each is an acceptable indicator of good quality EOL care for patients with hematologic malignancies." We decided a priori that we would consider a measure to be "highly acceptable" if there were at least 75% agreement among hematologic oncologists on its acceptability. Worrying that they might reject them all, we also asked them to identify three measures they would choose in a scenario where three had to be adopted. Results: We received 349 surveys from 48 states (response rate: 57.3%). Non-responders were not significantly different across known variables (gender and region of practice). Among respondents, median age was 52 years, median time in practice was 25 years, and 43% practiced primarily in tertiary centers. Eighty-seven percent were board-certified in oncology, 81% in hematology, and 71% in both specialties. The table below shows acceptability of the quality measures as rated by respondents. In the exercise where three measures had to be chosen, the one chosen most often was no CPR within 30 days of death (54%), followed by enrollment in hospice >7 days before death (46%). Conclusions: In contrast to our hypothesis, all of the measures we presented were considered acceptable by a substantial proportion of the hematologic oncologists in our national cohort. Moreover, while four of the measures reached our a priori designation of being highly acceptable, the two hematology-focused measures did not meet this same threshold. These data suggest that in hematologic oncology, resources should be directed towards addressing barriers to performance on established EOL quality measures in addition to creating new ones. Figure 1. Figure 1. Disclosures No relevant conflicts of interest to declare.

Barriers to Quality End-of-Life Care for Patients With Blood Cancers

2016 ◽  
Vol 34 (26) ◽  
pp. 3126-3132 ◽  
Author(s):  
Oreofe O. Odejide ◽  
Angel M. Cronin ◽  
Nolan B. Condron ◽  
Sean A. Fletcher ◽  
Craig C. Earle ◽  
...  
Keyword(s):  
End Of Life ◽  
Quality Measures ◽  
Hematologic Malignancies ◽  
Patient Expectations ◽  
Specific Patient ◽  
Suboptimal Care ◽  
National Cohort ◽  
Qualitative Work ◽  
Advance Care ◽  
Eol Care

Purpose Patients with blood cancers have been shown to receive suboptimal care at the end of life (EOL) when assessed with standard oncology quality measures (eg, no chemotherapy ≤ 14 days before death). As they were developed primarily for solid tumors, it is unclear if these measures are appropriate for patients with hematologic malignancies. Moreover, barriers to high-quality EOL care for this specific patient population are largely unknown. Methods In 2015, we asked a national cohort of hematologic oncologists about the acceptability of eight standard EOL quality measures. Building on prior qualitative work, we prespecified that measures achieving agreement among at least 55% of respondents would be considered acceptable. We also explored perspectives regarding barriers to quality EOL care. Results We received 349 surveys (response rate = 57.3%). Six of the standard measures met the threshold of acceptability, and four were acceptable to > 75% of respondents: hospice admission > 7 days before death, no chemotherapy ≤ 14 days before death, no intubation in the last 30 days of life, and no cardiopulmonary resuscitation in the last 30 days of life. The highest-ranked barriers to quality EOL care reported were “unrealistic patient expectations” (97.3%), “clinician concern about taking away hope” (71.3%), and “unrealistic clinician expectations” (59.0%). Conclusion In this large national cohort of hematologic oncologists, standard EOL quality measures were highly acceptable. The top barrier to quality EOL care reported was unrealistic patient expectations, which may be best addressed with more timely and effective advance care discussions.

The Influence of Hypothetical Death Scenarios on Multidimensional End-of-Life Care Preferences

2016 ◽  
Vol 35 (1) ◽  
pp. 52-59 ◽  
Author(s):  
Kara B. Dassel ◽  
Rebecca Utz ◽  
Katherine Supiano ◽  
Nancy McGee ◽  
Seth Latimer
Keyword(s):  
Quality Of Life ◽  
End Of Life ◽  
Treatment Options ◽  
National Sample ◽  
Health Related Quality ◽  
Location Of Death ◽  
Related Quality ◽  
Health Related ◽  
Eol Care

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.

scholarly journals Caregiver evaluation of the quality of end-of-life care (CEQUEL) scale: The caregiver’s perception of patient care near death.

2013 ◽  
Vol 31 (15_suppl) ◽  
pp. 6573-6573
Author(s):  
Philip C Higgins ◽  
Holly Gwen Prigerson
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Convergent Validity ◽  
Risk Indicator ◽  
Life Care ◽  
Trauma Symptoms ◽  
Prospective Longitudinal Study ◽  
Eol Care ◽  
Prospective Longitudinal

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.

Chemotherapy at the end of life: Do we know when to stop?

2021 ◽  
Vol 39 (15_suppl) ◽  
pp. e24005-e24005
Author(s):  
Renana Barak ◽  
Einav Zagagi Yohay ◽  
Barliz Waissengrin ◽  
Ido Wolf
Keyword(s):  
End Of Life ◽  
Disease Duration ◽  
Performance Status ◽  
Poor Quality ◽  
Palliative Intent ◽  
Care Services ◽  
Palliative Care Services ◽  
Eol Care ◽  
Oncologic Treatment

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.

Call the Rezadora: Aiding Latino Families at the End of Life

2021 ◽  
pp. 154041532110289
Author(s):  
Kim L. Larson ◽  
Graziella D. Jewell ◽  
Maria Fernanda Maldonado ◽  
Morgan E. Braxton ◽  
Lee Ann Johnson
Keyword(s):  
End Of Life ◽  
Single Case ◽  
The United States ◽  
Latino Families ◽  
Holistic View ◽  
Serious Illness ◽  
Care Services ◽  
Palliative Care Teams ◽  
Eol Care

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.

Improving the Quality of Care across All Settings

2019 ◽  
pp. 573-605
Author(s):  
Marilyn Bookbinder ◽  
Romina Arceo ◽  
James T. McDaniel
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
The United States ◽  
Healthcare Settings ◽  
National Priority ◽  
Hospice And Palliative Care ◽  
Eol Care ◽  
Clinician Assessment ◽  
Care Path

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.

Retrospective review of end-of-life care in the last month of life in older patients with multiple myeloma: what collaboration between haematologists and palliative care teams?

2020 ◽  
pp. bmjspcare-2020-002293
Author(s):  
Thomas Chalopin ◽  
Nicolas Vallet ◽  
Lotfi Benboubker ◽  
Marlène Ochmann ◽  
Emmanuel Gyan ◽  
...  
Keyword(s):  
Multiple Myeloma ◽  
Palliative Care ◽  
End Of Life ◽  
Older Patients ◽  
High Rate ◽  
Palliative Care Teams ◽  
Care Family ◽  
Eol Care

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.

Gender Differences in End-of-Life Care in Older Mexican American Adults

2020 ◽  
Vol 35 (4) ◽  
pp. 256-266
Author(s):  
Evangeline M. Ortiz-Dowling ◽  
Janice D. Crist ◽  
Kimberly Shea ◽  
Linda R. Phillips
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Health Care Professionals ◽  
Mexican Americans ◽  
Mexican American ◽  
A Priori ◽  
The United States ◽  
Review Articles ◽  
And Gender ◽  
Eol Care

Mexican Americans (MAs), 1 of 10 subgroups of Latinos, are the largest and fastest growing Latino subgroup in the United States; yet, their access to end-of-life (EOL) care using hospice services is low. An investigation was needed into extant research-based knowledge about factors influencing EOL care decisions among MAs to guide health-care professionals in assisting MAs to make timely, acceptable, and satisfactory EOL care decisions. To determine whether gender was an influence on EOL decision-making among older MAs, CINAHL and PubMed were searched for articles published between 1994 and 2018. Relevant sources were also identified through the reference lists of review articles. Reports were included if they were written in English, involved participants aged 50 years and older who identified themselves as MA, and data derived directly from participants. Reports in which MAs were not equally represented in the sample, large databases, and instrumentation development and testing articles were excluded. Of the 345 unduplicated articles identified in our electronic search and the 47 identified through review articles, 22 met the inclusion criteria. Content analysis was conducted using a priori codes from the Ethno-Cultural Gerontological Nursing Model (ECGNM). Only 8 (36%) of the 22 articles reported on MA older adults’ gendered experiences related to EOL decision-making. Results indicate an association between gender and EOL decision-making. As the older MA population grows, tackling disparities in EOL services use requires attention to how culture and gender influence EOL decision-making and care.

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 ◽  
...  
Keyword(s):  
Marital Status ◽  
End Of Life ◽  
Solid Tumors ◽  
Myelodysplastic Syndromes ◽  
Research Funding ◽  
National Database ◽  
Icu Admission ◽  
Eol Care ◽  
Over Time

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.

Evaluating end of life care: The Quality Oncology Practice Initiative (QOPI) experience

2006 ◽  
Vol 24 (18_suppl) ◽  
pp. 8573-8573 ◽  
Author(s):  
M. N. Neuss ◽  
J. O. Jacobson ◽  
C. Earle ◽  
C. E. Desch ◽  
K. McNiff ◽  
...  
Keyword(s):  
End Of Life ◽  
Cancer Patients ◽  
Population Based ◽  
Administrative Databases ◽  
Self Assessment ◽  
Web Based ◽  
Oncology Practice ◽  
High Level ◽  
Eol Care

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.

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