Occupational Variation in End-of-Life Care Intensity

2017 ◽  
Vol 35 (3) ◽  
pp. 377-383
Author(s):  
Joseph A. Hyder ◽  
R. Sterling Haring ◽  
Daniel Sturgeon ◽  
Priscilla K. Gazarian ◽  
Wei Jiang ◽  
...  
Keyword(s):  
General Population ◽  
End Of Life ◽  
Sex Education ◽  
End Of Life Care ◽  
Statistical Significance ◽  
Work Place ◽  
Hospital Death ◽  
Life Care ◽  
Hospital Referral ◽  
Eol Care

Background: End-of-life (EOL) care intensity is known to vary by secular and geographic patterns. US physicians receive less aggressive EOL care than the general population, presumably the result of preferences shaped by work-place experience with EOL care. Objective: We investigated occupation as a source of variation in EOL care intensity. Methods: Across 4 states, we identified 660 599, nonhealth maintenance organization Medicare beneficiaries aged ≥66 years who died between 2004 and 2011. Linking death certificates, we identified beneficiaries with prespecified occupations: nurses, farmers, clergy, mortuary workers, homemakers, first-responders, veterinary workers, teachers, accountants, and the general population. End-of-life care intensity over the last 6 months of life was assessed using 5 validated measures: (1) Medicare expenditures, rates of (2) hospice, (3) surgery, (4) intensive care, and (5) in-hospital death. Results: Occupation was a source of large variation in EOL care intensity across all measures, before and after adjustment for sex, education, age-adjusted Charlson Comorbidity Index, race/ethnicity, and hospital referral region. For example, absolute and relative adjusted differences in expenditures were US$9991 and 42% of population mean expenditure ( P < .001 for both). Compared to the general population on the 5 EOL care intensity measures, teachers (5 of 5), homemakers (4 of 5), farmers (4 of 5), and clergy (3 of 5) demonstrated significantly less aggressive care. Mortuary workers had lower EOL care intensity (4 of 5) but small numbers limited statistical significance. Conclusion: Occupations with likely exposure to child development, death/bereavement, and naturalistic influences demonstrated lower EOL care intensity. These findings may inform patients and clinicians navigating choices around individual EOL care preferences.

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.

Place of Death of Geriatric Population in Turkey: A 7-Year Observational Study

2021 ◽  
pp. 082585972110365
Author(s):  
Serdar Ceylan ◽  
Merve Guner Oytun ◽  
Arzu Okyar Bas ◽  
Zeynep Kahyaoglu ◽  
Burcu B. Dogu ◽  
...  
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
University Hospital ◽  
Place Of Death ◽  
Public Health Issue ◽  
Hospital Death ◽  
Chronic Obstructive ◽  
Life Care ◽  
Geriatric Population ◽  
Significant Difference

Background End-of-life care has become an important public health issue in recent years. Place of death is a major component of end-of-life care. Despite attempts to improve end-of-life care, there has not been published any data about place of deaths in Turkey. Aim: This retrospective, cross-sectional study investigates the place of death and trends over the years in geriatric age groups in Turkey. Methods: Patients who were admitted to geriatric outpatient clinic of a university hospital during a 7-year period were included. Place and date of death information were received from the death notification system and recorded as hospital or out-of-hospital death. Demographic and clinical data were collected from the hospital information system. Deaths occurring after March 1, 2020 were not included to eliminate the effect of coronavirus disease-2019 pandemic. Results: A total of 4025 (20.7%) patients were determined to be dead. Approximately three-quarters of deaths (73.0%) occurred in hospital. The number of deaths reported from nursing homes was only 13 (3.0%). Patients with dementia less frequently died in hospital, however, it was not statistically significant (12.4% vs 14.7%, P = .05). The prevalence of death in hospital was significantly higher in patients with chronic renal failure (3.1% vs 1.7%, P = .02). The presence of comorbid conditions such as heart failure, cerebrovascular disease, Parkinson's disease, chronic obstructive pulmonary disease/asthma, and cancer did not affect the place of death ( P = .24, .21, .24, .51, and .18). Out-of-hospital mortality increased with advanced age ( P < .001). No significant difference was found in the place of death over the years ( P = .41). Conclusion: To the best of our knowledge, this is the first study examining the place of death in Turkey, an aging country. Our results may help to establish policies about end-of-life care in elderly people to improve quality of life by using resources effectively.

scholarly journals Pediatric-Specific End-of-Life Care Quality Measures: An Unmet Need of a Vulnerable Population

2017 ◽  
Vol 13 (10) ◽  
pp. e874-e880 ◽  
Author(s):  
Emily E. Johnston ◽  
Abby R. Rosenberg ◽  
Arif H. Kamal
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Quality Measures ◽  
Care Quality ◽  
Patient Choice ◽  
Decision Makers ◽  
Hospital Death ◽  
Life Care ◽  
High Quality ◽  
National Quality

We must ensure that the 20,000 US children (age 0 to 19 years) who die as a result of serious illness annually receive high-quality end-of-life care. Ensuring high-quality end-of-life care requires recognition that pediatric end-of-life care is conceptually and operationally different than that for adults. For example, in-hospital adult death is considered an outcome to be avoided, whereas many pediatric families may prefer hospital death. Because pediatric deaths are comparatively rare, not all centers offer pediatric-focused palliative care and hospice services. The unique psychosocial issues facing families who are losing a child include challenges for parent decision makers and young siblings. Furthermore, the focus on advance directive documentation in adult care may be less relevant in pediatrics because parental decision makers are available. Health care quality measures provide a framework for tracking the care provided and aid in agency and provider accountability, reimbursement, and educated patient choice for location of care. The National Quality Forum, Joint Commission, and other groups have developed several end-of-life measures. However, none of the current quality measures focus on the unique needs of dying pediatric patients and their caregivers. To evolve the existing infrastructure to better measure and report quality pediatric end-of-life care, we propose two changes. First, we outline how existing adult quality measures may be modified to better address pediatric end-of-life care. Second, we suggest the formation of a pediatric quality measure end-of-life task force. These are the next steps to evolving end-of-life quality measures to better fit the needs of seriously ill children.

scholarly journals Hospital death in dementia patients and regional provision of palliative and end-of-life care: National patient data analysis

2018 ◽  
Vol 5 (1) ◽  
pp. 1483097
Author(s):  
Kayo Hirooka ◽  
Miharu Nakanishi ◽  
Hiroki Fukahori ◽  
Atsushi Nishida ◽  
Selena Gray
Keyword(s):  
Data Analysis ◽  
End Of Life ◽  
End Of Life Care ◽  
Patient Data ◽  
Hospital Death ◽  
Life Care ◽  
Dementia Patients ◽  
National Patient

scholarly journals Nursing home staff’s perspective on end-of-life care of German nursing home residents: a cross-sectional survey

2020 ◽  
Vol 19 (1) ◽  
Author(s):  
Anke Strautmann ◽  
Katharina Allers ◽  
Alexander Maximilian Fassmer ◽  
Falk Hoffmann
Keyword(s):  
Palliative Care ◽  
Nursing Home ◽  
Nursing Homes ◽  
End Of Life ◽  
Nursing Staff ◽  
End Of Life Care ◽  
Nursing Home Residents ◽  
Hospital Death ◽  
Life Care ◽  
Cross Sectional

Abstract Background Nursing homes are becoming more important for end-of-life care. Within the industrialised world, Germany is among the countries with the most end-of-life hospitalizations in nursing home residents. To improve end-of-life care, investigation in the status quo is required. The objective was to gain a better understanding of the perspectives of nursing home staff on the current situation of end-of-life care in Germany. Methods A cross-sectional study was conducted as a postal survey among a random sample of 1069 German nursing homes in 2019. The survey was primarily addressed to nursing staff management. Data was analyzed using descriptive statistics. Staff was asked to rate different items regarding common practices and potential deficits of end-of-life care on a 5-point-Likert-scale. Estimations of the proportions of in-hospital deaths, residents with advance directives (AD), cases in which documented ADs were ignored, and most important measures for improvement of end-of-life care were requested. Results 486 (45.5%) questionnaires were returned, mostly by nursing staff managers (64.7%) and nursing home directors (29.9%). 64.4% of the respondents rated end-of-life care rather good, the remainder rated it as rather bad. The prevalence of in-hospital death was estimated by the respondents at 31.5% (SD: 19.9). Approximately a third suggested that residents receive hospital treatments too frequently. Respondents estimated that 45.9% (SD: 21.6) of the residents held ADs and that 28.4% (SD: 26.8) of available ADs are not being considered. Increased staffing, better qualification, closer involvement of general practitioners and better availability of palliative care concepts were the most important measures for improvement. Conclusions Together with higher staffing, better availability and integration of palliative care concepts may well improve end-of-life care. Prerequisite for stronger ties between nursing home and palliative care is high-quality education of those involved in end-of-life care.

Promoting Collaboration Between Hospice and Palliative Care Providers and Adult Day Services for Individuals With Intellectual and Developmental Disabilities

2015 ◽  
Vol 70 (4) ◽  
pp. 380-403 ◽  
Author(s):  
Corina R. Ronneberg ◽  
Lisa Peters-Beumer ◽  
Beth Marks ◽  
Alan Factor
Keyword(s):  
Developmental Disabilities ◽  
General Population ◽  
End Of Life ◽  
End Of Life Care ◽  
Intellectual And Developmental Disabilities ◽  
Life Care ◽  
Care Providers ◽  
Term Care ◽  
Adult Day Services ◽  
Day Services

While end-of-life issues are increasingly gaining more attention, people with intellectual and developmental disabilities (IDD) continue to receive significantly less consideration in research, education, and clinical practice compared with the general population. This is a growing concern especially since the sheer number of persons aging with IDD is expected to double in the next 17 years. Furthermore, policies are shifting to reflect a preference for home and community-based services as an alternative to institutionalization, and it becomes evident that adult day services (ADS) may be ideal settings for receipt of end-of-life care, especially among individuals with IDD. However, end-of-life care and advance planning most commonly occur in long-term care settings for the general population and have historically been less of a priority in ADS and residential services for people with IDD. This article discusses the attitudes of, and collaboration between, ADS and end-of-life providers for aging adults including persons with IDD and explores how ADS may be a great pathway for delivering end-of-life care to the IDD population. Implications and recommendations will also be examined.

scholarly journals Prevalence and characteristics of prisoners requiring end-of-life care: A prospective national survey

2017 ◽  
Vol 32 (1) ◽  
pp. 6-16 ◽  
Author(s):  
Lionel Pazart ◽  
Aurélie Godard-Marceau ◽  
Aline Chassagne ◽  
Aurore Vivot-Pugin ◽  
Elodie Cretin ◽  
...  
Keyword(s):  
Palliative Care ◽  
General Population ◽  
End Of Life ◽  
National Survey ◽  
End Of Life Care ◽  
Terminal Illness ◽  
Prison Population ◽  
Critical Issue ◽  
Life Care ◽  
The Impact

Background: Ensuring adequate end-of-life care for prisoners is a critical issue. In France, data investigating the impact of laws allowing release of seriously ill prisoners are lacking. Aim: To assess the number and characteristics of prisoners requiring palliative care in French prisons. Design: A prospective, national survey collecting data over a 3-month period. Setting/participants: All healthcare units ( n = 190) providing care for prisoners in France. The prison population was 66,698 during the study period. Data collection concerned prisoners requiring end-of-life care, that is, with serious, advanced, progressive, or terminal illness and life expectancy <1 year. Results: Estimated annual prevalence of ill prisoners requiring end-of-life care was 15.2 (confidence interval: 12.5–18.3) per 10,000 prisoners. The observed number of prisoners requiring palliative care ( n = 50) was twice as high as the expected age- and sex-standardized number based on the general population and similar to the expected number among persons 10 years older in the free community. In all, 41 of 44 (93%) of identified ill prisoners were eligible for temporary or permanent compassionate release, according to their practitioner. Only 33 of 48 (68%) of ill prisoners requested suspension or reduction in their sentence on medical grounds; half (16/33) received a positive answer. Conclusion: The proportion of prisoners requiring palliative care is higher than expected in the general population. The general frailty and co-existing conditions of prisoners before incarceration and the acceleration of these phenomena in prison could explain this increase in end-of-life situations among prisoners.

Direct care staff and parents'/legal guardians' perspectives on end-of-life care in a long-term care facility for medically fragile and intellectually disabled pediatric and young adult residents

2012 ◽  
Vol 11 (4) ◽  
pp. 307-314 ◽  
Author(s):  
Richard I. Grossberg ◽  
Martha Blackford ◽  
Sarah Friebert ◽  
Ethan Benore ◽  
Michael D. Reed
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Response Rate ◽  
Care Facility ◽  
Life Care ◽  
Term Care ◽  
Long Term Care Facility ◽  
Legal Guardians ◽  
Eol Care

AbstractObjective:Children and young adults with severe disabilities and their families are faced with enormous challenges throughout the lifespan, including admitting the child to a long-term care facility (LTCF) and making end-of-life (EOL) care decisions. While children are residents of these specialized LTCF, the majority of their daily care, even up until death, is provided by nursing aides or habilitation aides (HAs) with limited training and educational backgrounds compared with other licensed healthcare providers. The purpose of this study was to determine the impact of a resident's EOL experience on the primary HAs and parents/guardians.Method:Thirty-five resident deaths occurred at Hattie Larlham Center for Children with Disabilities (HLCCD) between January 1, 2006 and February 28, 2009. The HAs and parents/legal guardians were identified for each death and invited to complete three surveys per resident (FAMCARE, Impact of Events Scale (IES)-revised, and Perspective on End-of-Life Care) to assess their experience. There were 112 surveys mailed to 62 HAs and 47 surveys mailed to 47 parents.Results:Forty-two surveys were returned from 18/62 HAs (response rate 29%) and 11/47 parents/legal guardians completed the surveys (response rate 23%). The FAMCARE survey found that parents were more satisfied with the EOL care than were the HAs. The IES-revised found no difference in traumatic responses from either group. Comments from the Perspective on End-of-Life Care survey were analyzed qualitatively for common themes including pain control, respect, decision making, environmental needs, resources, and support.Significance of results:Because of a low response rate, it was difficult to draw significant conclusions; however, several interesting trends were noted regarding the number of deaths HAs experienced, satisfaction with care, and distress. The special needs of this population and their caregivers can provide crucial insights into interventions (e.g. chaplaincy support, debriefings, anticipatory counseling, environmental changes) that might be of benefit for any caregiver or parent of a child with a long-term, chronic condition, particularly involving developmental disability.

scholarly journals Use of Hospital Referral Regions in Evaluating End-of-Life Care

2020 ◽  
Vol 23 (1) ◽  
pp. 90-96
Author(s):  
Brystana G. Kaufman ◽  
David Klemish ◽  
Andrew Olson ◽  
Cordt T. Kassner ◽  
Jerome P. Reiter ◽  
...  
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Life Care ◽  
Hospital Referral

Cancer versus non-cancer caregivers: An analysis of communication needs from the 2015 Caregivers in the U.S. study.

2016 ◽  
Vol 34 (26_suppl) ◽  
pp. 4-4 ◽  
Author(s):  
Erin E. Kent ◽  
Margaret Longacre ◽  
Lisa Weber-Raley ◽  
C. Grace Whiting ◽  
Gail Hunt
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Statistical Significance ◽  
Panel Study ◽  
Healthcare Providers ◽  
Care Recipient ◽  
Life Care ◽  
Cancer Caregivers ◽  
Nationally Representative ◽  
The U.S

4 Background: Informal caregiving for cancer patients can be both demanding and burdensome – physically, emotionally, and financially – for many caregivers. Cancer caregivers play a large role in advocating for and administering care for their recipients. The current study aimed to explore if cancer caregivers differ from non-cancer caregivers with regard to communicating with healthcare providers, and need for information about end-of-life care. Methods: Data were used from the 2015 Caregiving in the U.S. (CGUS) dataset, a nationally-representative online probability-based panel study of unpaid adult caregivers. The analysis compared cancer and non-cancer caregivers to determine similarities and differences in characteristics and experiences, with a focus on unmet needs in communication with healthcare providers and end-of-life decision-making. Statistical significance was determined at the p < 0.05 level. Results: Approximately 7% (2.8 million) of caregiver participants in the CGUS study indicate cancer as the primary reason for providing care. Cancer caregivers report higher burden than non-cancer caregivers (62% vs. 38%) and significantly more hours per week caregiving (32.9 vs. 23.9 hours per week). Significantly more cancer caregivers indicate interacting with key providers, agencies, and professionals on behalf of their care recipients: 82% report communicating with healthcare professionals (vs. 62%), 76% monitor/adjust care (vs. 66%), and 62% report advocating for care recipient (vs. 49%). Finally, almost twice the number of cancer caregivers than non-cancer caregivers (40% vs. 21%) report needing more help/information with making end-of-life decisions. Conclusions: These findings indicate the burdensome and demanding role of cancer caregiving. These caregivers play a substantial role in directing, monitoring, and advocating for survivor care. Yet, many need more information about end-of-life care. This suggests a gap in preparation despite the roles provided, and suggest a need to explore strategies to engage patient-provider-caregiver communication about care, particularly end of life care.

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