Dying to Know: A Community Survey about Dying and End-of-Life Care

2010 ◽  
Vol 60 (1) ◽  
pp. 33-50 ◽  
Author(s):  
Susan L. Schrader ◽  
Margot L. Nelson ◽  
LuAnn M. Eidsness
Keyword(s):  
South Dakota ◽  
End Of Life ◽  
Sex Education ◽  
Professional Education ◽  
End Of Life Care ◽  
Hospice Care ◽  
Community Survey ◽  
Future Research ◽  
Community Studies ◽  
Eol Care

A community survey of Sioux Falls, South Dakota was conducted in 2004 to understand knowledge, attitudes, and preferences about end-of-life (EOL) care and to generate conversations about these topics. Questionnaires were sent to 5,000 randomly selected households, with a return of 1,042 (21%). Most respondents said preparation for EOL is very important, yet far fewer had taken steps to ensure their EOL wishes would be known or met. These disparities are examined, with recommendations for future research and public policy. Bivariate analyses revealed significant differences by age, sex, education, marital status, and religiosity. Community studies are important for baseline understanding, evoking conversation, and setting goals for change. Public education is needed to strengthen understandings of hospice care, and professional education is needed to raise awareness about practitioners' roles in resolving discrepancies between what people want and what they get at end of life.

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.

Integrative Review of the Literature on Hispanics and Hospice

2017 ◽  
Vol 35 (3) ◽  
pp. 542-554 ◽  
Author(s):  
Margaret L. Rising ◽  
Dena S. Hassouneh ◽  
Kristin F. Lutz ◽  
Chris S. Lee ◽  
Pat Berry
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Hospice Care ◽  
Research Literature ◽  
Integrative Review ◽  
Future Research ◽  
Life Care ◽  
Hispanic Culture ◽  
Cultural Considerations ◽  
Socioeconomic Considerations

The provision of optimal end-of-life care to Hispanics receiving hospice care requires familiarity with hospice-specific variables. For example, a preference for nondisclosure of terminal prognosis in some Hispanics is incongruous with traditional hospice practice. In addition, the Spanish word for hospice, “hospicio,” has negative connotations about abandonment of loved ones. Added to cultural considerations are socioeconomic considerations. Many marginalized Hispanic individuals may experience distinct challenges when enrolling in hospice due to socioeconomic hardships relating to poverty, citizenship, and lack of insurance. This systematic integrative review examines the research literature on Hispanics and hospice to report on the state of the science for this topic. Reviewed articles were identified systematically using computer research databases and inclusion and exclusion criteria. Of the 21 reviewed articles, many are survey and low-inference qualitative designs with limited validity and trustworthiness. Most survey instruments were not validated for Spanish language or Hispanic culture. None of the qualitative studies included theoretical sampling or follow-up interviews. Few study designs considered heterogeneity within the Hispanic population. Interpreting results cautiously, there is evidence that some Hispanics find some satisfaction with hospice care in spite of cultural incongruities and socioeconomic challenges. Future research calls for intervention studies and high-inference qualitative designs to gain insight into hospice experiences and what constitutes quality hospice care from the perspectives of Hispanic subgroups. Assessing quality and designing interventions for these end-of-life cultural and socioeconomic issues will improve end-of-life care and facilitate the hospice philosophy of promoting emotional growth at end of life.

Dysphagia in Hospice Care: The Roles of Social Work and Speech-Language Pathologists

2014 ◽  
Vol 23 (4) ◽  
pp. 173-186 ◽  
Author(s):  
Deborah Hinson ◽  
Aaron J. Goldsmith ◽  
Joseph Murray
Keyword(s):  
Social Work ◽  
End Of Life ◽  
Case Studies ◽  
End Of Life Care ◽  
Hospice Care ◽  
Patient Communication ◽  
Life Care ◽  
Speech Language Pathologists ◽  
Four Levels

This article addresses the unique roles of social work and speech-language pathologists (SLPs) in end-of-life and hospice care settings. The four levels of hospice care are explained. Suggested social work and SLP interventions for end-of-life nutrition and approaches to patient communication are offered. Case studies are used to illustrate the specialized roles that social work and SLP have in end-of-life care settings.

Insurance Status and Ethnicity Impact Health Disparities in Rates of Advance Directives in Trauma

2021 ◽  
pp. 000313482110111
Author(s):  
Krista L. Haines ◽  
Benjamin P. Nguyen ◽  
Ioana Antonescu ◽  
Jennifer Freeman ◽  
Christopher Cox ◽  
...  
Keyword(s):  
Mechanical Ventilation ◽  
End Of Life ◽  
Hospice Care ◽  
Private Insurance ◽  
Future Research ◽  
Trauma Patients ◽  
Improvement Program ◽  
Advanced Directives ◽  
Logistic Regression Models ◽  
Discharge Disposition

Introduction Advanced directives (ADs) provide a framework from which families may understand patient’s wishes. However, end-of-life planning may not be prioritized by everyone. This analysis aimed to determine what populations have ADs and how they affected trauma outcomes. Methods Adult trauma patients recorded in the American College of Surgeons Trauma Quality Improvement Program (TQIP) from 2013-2015 were included. The primary outcome was presence of an AD. Secondary outcomes included mortality, length of stay (LOS), mechanical ventilation, ICU admission/LOS, withdrawal of life-sustaining measures, and discharge disposition. Multivariable logistic regression models were developed for outcomes. Results 44 705 patients were included in the analyses. Advanced directives were present in 1.79% of patients. The average age for patients with ADs was 77.8 ± 10.7. African American (odds ratio (OR) .53, confidence intervals [CI] .36-.79) and Asian (OR .22, CI .05-.91) patients were less likely to have ADs. Conversely, Medicaid (OR 1.70, CI 1.06-2.73) and Medicare (OR 1.65, CI 1.25-2.17) patients were more likely to have ADs as compared to those with private insurance. The presence of ADs was associated with increased hospital mortality (OR 2.84, CI 2.19-3.70), increased transition to comfort measures (OR 2.87, CI 2.08-3.95), and shorter LOS (CO −.74, CI −1.26-.22). Patients with ADs had an increased odds of hospice care (OR 4.24, CI 3.18-5.64). Conclusion Advanced directives at admission are uncommon, particularly among African Americans and Asians. The presence of ADs was associated with increased mortality, use of mechanical ventilation, admission to the ICU, withdrawal of life-sustaining measures, and hospice. Future research should target expansion of ADs among minority populations to alleviate disparities in end-of-life treatment.

“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.

Cannabis and End-of-Life Care: A Snapshot of Hospice Planning and Experiences Among Illinois Medical Cannabis Patients With A Terminal Diagnosis

2021 ◽  
pp. 104990912110186
Author(s):  
James Alton Croker ◽  
Julie Bobitt ◽  
Sara Sanders ◽  
Kanika Arora ◽  
Keith Mueller ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Fast Track ◽  
Hospice Care ◽  
Cannabis Use ◽  
Care Plan ◽  
Medical Cannabis ◽  
Cross Sectional Survey ◽  
Cross Sectional ◽  
Eol Care

Introduction: Between 2013 and 2019, Illinois limited cannabis access to certified patients enrolled in the Illinois Medical Cannabis Program (IMCP). In 2016, the state instituted a fast-track pathway for terminal patients. The benefits of medicinal cannabis (MC) have clear implications for patients near end-of-life (EOL). However, little is known about how terminal patients engage medical cannabis relative to supportive care. Methods: Anonymous cross-sectional survey data were collected from 342 terminal patients who were already enrolled in ( n = 19) or planning to enroll ( n = 323) in hospice for EOL care. Logistic regression models compare patients in the sample on hospice planning vs. hospice enrollment, use of palliative care vs. hospice care, and use standard care vs non-hospice palliative care. Results: In our sample, cancer patients ( OR = 0.21 (0.11), p < .01), and those who used the fast-track application into the IMCP ( OR = 0.11 (0.06), p < .001) were less likely to be enrolled in hospice. Compared to patients in palliative care, hospice patients were less likely to report cancer as their qualifying condition ( OR = 0.16 (0.11), p < .01), or entered the IMCP via the fast-track ( OR = 0.23 (0.15), p < .05). Discussion: Given low hospice enrollment in a fairly large EOL sample, cannabis use may operate as an alternative to supportive forms of care like hospice and palliation. Clinicians should initiate conversations about cannabis use with their patients while also engaging EOL Care planning discussions as an essential part of the general care plan.

Serious Mental Illness and Hospice Care

2021 ◽  
pp. 082585972110220
Author(s):  
Gwen Levitt
Keyword(s):  
Mental Health ◽  
End Of Life ◽  
End Of Life Care ◽  
Psychiatric Illness ◽  
Hospice Care ◽  
Treatment Options ◽  
Life Care ◽  
Case Review ◽  
Health Community ◽  
End Stage

There are a small number of articles in the literature discussing palliative and end-of-life care in the SMI population. Most tackle the questions relating to competency to refuse care in end-stage anorexia or terminal medical conditions. This is a case review of a 55 year old patient with a complex psychiatric and medical history, who despite extensive treatment and long hospitalizations has failed to regain any ability to care for her basic needs. She has exhausted all available treatment options and her prognosis is extremely poor. The mental health community is resistant to discussing and/ or confronting the fact that such a patient faces with the need for end-of-life care directly related to chronic psychiatric illness.

Pediatric End of Life Care: Impact of Islamic Faith

2021 ◽  
pp. 019394592110165
Author(s):  
Shahad A. Hafez ◽  
Julia A. Snethen ◽  
Emmanuel Ngui ◽  
Julie Ellis ◽  
Murad Taani
Keyword(s):  
Saudi Arabia ◽  
End Of Life ◽  
End Of Life Care ◽  
Life Experience ◽  
Primary Caregivers ◽  
Positive Influence ◽  
Future Research ◽  
Life Care ◽  
Beliefs And Practices ◽  
Education Practice

Studies investigating children and families’ experiences at end of life in Saudi Arabia are limited. However, one factor found to have an impact on patient and primary caregiver end of life care is Islam. Since women are the primary caregivers for children in Saudi Arabia, the purpose of this study was to explore the perceptions of Muslim women caring for a child at end of life. Using a qualitative approach, interviews were conducted with 24 female primary caregivers caring for a child at end of life. Thematic analysis was used to analyze the data. The researchers found that Islamic beliefs and practices had a positive influence on primary caregivers’ experiences. Islamic beliefs and practices helped support participants through their child’s end of life experience. Results have implications for health care education, practice, policy, and future research on end of life in Saudi Arabia other Muslim countries.

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.

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