Using cancer registry records linked with health insurance records to measure costs and services at end-of-life.

2016 ◽  
Vol 34 (26_suppl) ◽  
pp. 186-186 ◽  
Author(s):  
Karma L. Kreizenbeck ◽  
Catherine R. Fedorenko ◽  
Kristine Stickney ◽  
Cara L McDermott ◽  
Ted Conklin ◽  
...  
Keyword(s):  
Colorectal Cancer ◽  
End Of Life ◽  
End Of Life Care ◽  
The United States ◽  
Tumor Patients ◽  
Factors Associated ◽  
Western Washington ◽  
The Difference ◽  
Eol Care ◽  
Out Of Pocket Costs

186 Background: Studies suggest that end-of-life (EOL) care for persons with cancer in the United States is variable and often misaligned with patient and family preferences. To better understand these issues, we developed reports on high-priority quality indicators and costs at EOL. Methods: Surveillance, Epidemiology, and End Results (SEER) records for solid tumor patients diagnosed with cancer in Western Washington state between 1/1/2007 and 12/31/2015 were linked with enrollment and claims from two regional commercial insurers. Using claims, we then developed algorithms to characterize EOL care for breast, colorectal, and non-small cell lung cancer (NSCLC), including costs of care at 90- and 30-days prior to death. Costs include all claims paid for ED, hospital, outpatient, and pharmacy care. We estimated patient out-of-pocket costs as the difference between allowed and paid claim amounts. Results: See Table. Across the largest 10 clinics in the region there was considerable variability in the average costs of cancer care in the last 90 days of life. The clinic-specific average ranged from $24,532 to $72,931 for breast cancer, $30,495 to $65,975 for colorectal cancer and $23,320 to $59,641 for NSCLC. Conclusions: At the end of life, care for patients with advanced breast, lung, and colorectal cancer is highly variable, costly to patients, and may be misaligned with the goals and preferences for patients and their family members. While the results may reflect both appropriate and unnecessary care, the large variation across clinics suggests opportunities for improvement. Further research is needed to identify factors associated with use of low-value, high-cost services at the end of life. [Table: see text]

Health care utilization and costs at end of life among patients with leukemia or lymphoma in a regional cancer registry-insurance claims linked database.

2016 ◽  
Vol 34 (26_suppl) ◽  
pp. 184-184
Author(s):  
Cara L McDermott ◽  
Catherine R. Fedorenko ◽  
Karma L. Kreizenbeck ◽  
Ted Conklin ◽  
Bruce Smith ◽  
...  
Keyword(s):  
End Of Life ◽  
High Intensity ◽  
Hematologic Malignancies ◽  
Care Utilization ◽  
Future Research ◽  
Intensity Of Care ◽  
Western Washington ◽  
The Difference ◽  
Eol Care ◽  
Out Of Pocket Costs

184 Background: End-of-life (EOL) care for persons with hematologic malignancies is variable and often involves high-intensity services at death approaches, which may not reflect patient or family preferences. We characterized healthcare utilization and associated costs in the last 30 days of life among subjects with leukemia or lymphoma to better understand patterns of care in this population. Methods: We linked enrollment and claims records from two regional commercial insurers to Surveillance, Epidemiology, and End Results (SEER) records for patients diagnosed with leukemia or lymphoma in Western Washington state between January 1, 2007 and December 31, 2015. We developed algorithms to characterize EOL care and calculate costs from both the payer and patient perspective for the last 30 days of life. Costs are derived from paid claims for inpatient, outpatient, and pharmacy utilization. Patient out-of-pocket costs are calculated as the difference between allowed and paid claim amounts. Results: See Table. Conclusions: In this analysis, a majority of subjects usedat least one form of high intensity care in the last 30 days of life, and average out-of-pocket costs were considerable. Future research will focus on developing interventions to assess patient and family preferences for intensity of care to better inform the provision of high-value care in this population. [Table: see text]

“We Are All Humans and Deserve a Decent Way to Go”: Examining Professional’s Experiences With Providing End-of-Life Care in Correctional Institutions

2021 ◽  
pp. 073401682110208
Author(s):  
Mollee Steely Smith ◽  
Brooke Cooley ◽  
Tusty ten Bensel
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Service Providers ◽  
Prison Population ◽  
Correctional Institutions ◽  
Southern State ◽  
Face To Face ◽  
The Past ◽  
Eol Care ◽  
Emotional Effects

The aging prison population has increased dramatically over the past two decades. As this population increases, correctional institutions are faced with health care challenges. Specifically, providing adequate end-of-life (EOL) care for terminally ill inmates has been a concern. Despite issues relating to providing EOL care, little is known about medical and correctional staff’s attitudes toward the implementation of EOL care. The purpose of this study was to understand the challenges faced by correctional and medical professionals, focusing on job satisfaction, obstacles, and emotional effects of providing EOL care in correctional institutions. Our data included 17 semistructured, face-to-face interviews with medical and correctional staff assigned to the EOL care unit in a southern state. Although the entire sample stated overall satisfaction with their job, participants noted several challenges and stressors, which included the lack of resources and difficulties in balancing care. Participants agreed that it was emotionally stressful to maintain appropriate relationships with the inmates, deal with patient manipulation, and be surrounded by dying and death. Implications are discussed relative to the needs and experiences of service providers and how to more effectively treat EOL inmate patients.

scholarly journals Last Place of Care and End-of-Life Quality of Life in the United States: Evidence From a National Representative Data Set

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 17-17
Author(s):  
Yifan Lou ◽  
Nan Jiang ◽  
Katherine Ornstein
Keyword(s):  
Quality Of Life ◽  
Older Adults ◽  
End Of Life ◽  
End Of Life Care ◽  
The United States ◽  
Life Care ◽  
Person Centered Care ◽  
Centered Care ◽  
The Relationship

Abstract Background: Quality of life (QoL) during last stage of life has raised expanded interests as an important aspect of person-centered care. Last place of care (LPC), refer to the last place decedents received their formal end-of-life care (EOLC), has been identified as a key indicator of older adults’ end-of-life QoL, but the relationship was understudied. This study explores the association between LPC and end-of-life QoL among American older adults. Methods: Data used seven waves of Last Month of Life data with a total sample of 3068 Medicare decedents in NHATS. Outcome is end-of-life QoL assessed by eleven measures on four domains: pain and symptoms management (SP), quality of healthcare encounter (HE), person-centered care (PC), and overall quality of care (QC). LPC was categorized into home, hospital, nursing home, and residential hospice. Multivariate logistic regression analyses were used to examine the relationship with covariates. Results: LPC varied by most demographic characteristics, except immigration status and education. Older adults whose LPC is hospital, compared to those who had home-care, were less likely to have great experiences on HE, PC, and QC. People dying at nursing homes are more likely to receive care meeting their dyspnea and spiritual needs. Residential hospice is negatively related to respected care, clear coordination, and keeping family informed, but are more likely to provide PS and spiritual care. Discussion: Home-based end-of-life care has certain advantages but still has room to improve on SP and religious concerns. Hospitals should keep reforming their service delivery structure to improve patients’ QoL.

How individual ethical frameworks shape physician trainees’ experiences providing end-of-life care: a qualitative study

2021 ◽  
pp. medethics-2020-106690
Author(s):  
Sarah Rosenwohl-Mack ◽  
Daniel Dohan ◽  
Thea Matthews ◽  
Jason Neil Batten ◽  
Elizabeth Dzeng
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Shared Decision Making ◽  
End Of Life Care ◽  
The United States ◽  
Ethical Framework ◽  
Shared Decision ◽  
Life Care ◽  
Best Interest ◽  
Ethical Frameworks

ObjectivesThe end of life is an ethically challenging time requiring complex decision-making. This study describes ethical frameworks among physician trainees, explores how these frameworks manifest and relates these frameworks to experiences delivering end-of-life care.DesignWe conducted semistructured in-depth exploratory qualitative interviews with physician trainees about experiences of end-of-life care and moral distress. We analysed the interviews using thematic analysis.SettingAcademic teaching hospitals in the United States and United Kingdom.ParticipantsWe interviewed 30 physician trainees. We purposefully sampled across three domains we expected to be associated with individual ethics (stage of training, gender and national healthcare context) in order to elicit a diversity of ethical and experiential perspectives.ResultsSome trainees subscribed to a best interest ethical framework, characterised by offering recommendations consistent with the patient’s goals and values, presenting only medically appropriate choices and supporting shared decision-making between the patient/family and medical team. Others endorsed an autonomy framework, characterised by presenting all technologically feasible choices, refraining from offering recommendations and prioritising the voice of patient/family as the decision-maker.ConclusionsThis study describes how physician trainees conceptualise their roles as being rooted in an autonomy or best interest framework. Physician trainees have limited clinical experience and decision-making autonomy and may have ethical frameworks that are dynamic and potentially highly influenced by experiences providing end-of-life care. A better understanding of how individual physicians’ ethical frameworks influences the care they give provides opportunities to improve patient communication and advance the role of shared decision-making to ensure goal-aligned end-of-life care.

End-of-Life Care behind Bars

2002 ◽  
Vol 10 (3) ◽  
pp. 233-241 ◽  
Author(s):  
Phyllis B. Taylor
Keyword(s):  
United States ◽  
End Of Life ◽  
End Of Life Care ◽  
The United States ◽  
Chronic Illnesses ◽  
Direct Result ◽  
Life Care ◽  
Prison Health ◽  
The Many ◽  
Changing Demographics

More people than ever before are being incarcerated in the United States. Many inmates are infected with HIV and hepatitis C. Sentences are increasing in length. Prison health care is now having to cope with the many chronic illnesses associated with an ill and aging population. The growth of end-of-life care programs in corrections in the United States is a direct result of the changing demographics of inmates. This article examines the need for end-of-life care behind bars and discusses selected hospice programs.

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.

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.

Sign in / Sign up

Export Citation Format

Share Document