Racial Differences in Next-of-Kin Participation in an Ongoing Survey of Satisfaction with End-of-Life Care: A Study of a Study

2006 ◽  
Vol 9 (5) ◽  
pp. 1076-1085 ◽  
Author(s):  
Kimberly S. Johnson ◽  
Katja Elbert-Avila ◽  
Maragatha Kuchibhatla ◽  
James A. Tulsky
Keyword(s):  
End Of Life ◽  
Racial Differences ◽  
End Of Life Care ◽  
Life Care ◽  
Next Of Kin

scholarly journals Aging and Advanced Dementia Matters: End-of-Life Care in Nursing Homes

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 520-521
Author(s):  
Ruth Lopez ◽  
Ellen McCarthy ◽  
Meghan Hendricksen ◽  
Susan McLennon ◽  
Anita Rogers ◽  
...  
Keyword(s):  
Nursing Home ◽  
End Of Life ◽  
Racial Differences ◽  
End Of Life Care ◽  
Feeding Tube ◽  
Nursing Home Care ◽  
Life Care ◽  
Advanced Dementia ◽  
Southeastern Us ◽  
Intensity Of Care

Abstract Over 5 million Americans have dementia, and the majority will die in nursing home (NHs). While comfort is the main goal of care for most NH residents with advanced dementia, they commonly receive burdensome and costly interventions such as hospital transfers and feeding tubes that are of little clinical benefit. Despite 20 years of research and numerous experts and associations advocating a palliative approach to care, quantitative studies continue to demonstrate striking and persistent regional, facility, and racial differences, including: greater intensity care among African American versus White residents; greater intensity of care in the Southeastern US; and wide variation in care among NHs in the same region of the country. The reasons for these differences are poorly understood. Assessment of Disparities and Variation for Alzheimer’s disease in Nursing home Care at End of life (ADVANCE) is a 3-year, NIA funded qualitative study of 16 NHs in 4 regions of the country which aims to explain regional and racial factors influencing feeding tube and hospital transfer rates. The purpose of this presentation is to present the methodology established in this study and to highlight factors challenging and enabling implementation of the study protocol. To date, data have been collected in 11 NHs, and include 135 staff interviews, 40 proxy interviews, and nearly 800 hours of observation. These findings demonstrate that although challenging, large qualitative research is possible and holds promise as an effective method to illuminate complex processes influencing end-of-life care for NH residents with advanced dementia.

scholarly journals Home care and end-of-life hospital admissions: a retrospective interview study in English primary and secondary care

2019 ◽  
Vol 69 (685) ◽  
pp. e561-e569 ◽  
Author(s):  
Sarah Hoare ◽  
Michael P Kelly ◽  
Stephen Barclay
Keyword(s):  
Home Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Hospital Admissions ◽  
Care Delivery ◽  
Care Provision ◽  
Life Care ◽  
Healthcare Staff ◽  
Next Of Kin ◽  
At Home

BackgroundEnabling death at home remains an important priority in end-of-life care policy. However, hospital continues to be a more prevalent place of death than home in the UK, with admissions at the end-of-life often negatively labelled. Admissions are frequently attributed to an unsuitable home environment, associated with inadequate family care provision and insufficient professional care delivery.AimTo understand problems in professional and lay care provision that discourage death at home and lead to hospital admissions at the end of life.Design and settingA qualitative study of admission to a large English hospital of patients close to the end of their life.MethodRetrospective in-depth semi-structured interviews with healthcare professionals (n = 30) and next-of-kin (n = 3) involved in an admission. Interviews addressed why older patients (>65 years) close to the end of life are admitted to hospital. Interviews were transcribed and analysed thematically.ResultsHome-based end-of-life care appeared precarious. Hospital admission was considered by healthcare staff when there was insufficient nursing provision, or where family support, which was often extensive but under supported, was challenged. In these circumstances, home was not recognised to be a suitable place of care or death, justifying seeking care provision elsewhere.ConclusionChallenges in home care provision led to hospital admissions. Home end-of-life care depended on substantial input from family and professional carers, both of which were under-resourced. Where either care was insufficient to meet the needs of patients, home was no longer deemed to be desirable by healthcare staff and hospital care was sought.

Feelings of Guilt—Experiences of Next of Kin in End-of-Life Care

2013 ◽  
Vol 15 (1) ◽  
pp. 33-40 ◽  
Author(s):  
Carina Werkander Harstäde ◽  
Birgitta Andershed ◽  
Åsa Roxberg ◽  
David Brunt
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Life Care ◽  
Next Of Kin

Between the patient and the next of kin in end-of-life care: A critical study based on feminist theory

2017 ◽  
Vol 26 (1) ◽  
pp. 201-211 ◽  
Author(s):  
Ellen Ramvi ◽  
Venke Irene Ueland
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Moral Distress ◽  
Moral Identity ◽  
Critical Study ◽  
Life Care ◽  
Ethical Challenges ◽  
Next Of Kin ◽  
Science Data ◽  
Kin Relationship

Background: For the experience of end-of-life care to be ‘good’ many ethical challenges in various relationships have to be resolved. In this article, we focus on challenges in the nurse–next of kin relationship. Little is known about difficulties in this relationship, when the next of kin are seen as separate from the patient. Research problem: From the perspective of nurses: What are the ethical challenges in relation to next of kin in end-of-life care? Research design: A critical qualitative approach was used, based on four focus group interviews. Participants: A total of 22 registered nurses enrolled on an Oncology nursing specialisation programme with experience from end-of-life care from various practice areas participated. Ethical considerations: The study was approved by the Norwegian Social Science Data Service, Bergen, Norway, project number 41109, and signed informed consent obtained from the participants before the focus groups began. Findings and discussion: Two descriptive themes emerged from the inductive analysis: ‘A feeling of mistrust, control and rejection’ and ‘Being between hope and denial of next of kin and the desire of the patient to die when the time is up’. Deductive reinterpretation of data (in the light of moral distress from a Feminist ethics perspective) has made visible the constraints that certain relations with next of kin in end-of-life care lay upon the nurses’ moral identity, the relationship and their responsibility. We discuss how these constraints have political and societal dimensions, as well as personal and relational ones. Conclusion: There is complex moral distress related to the nurse–next of kin relationship which calls for ethical reflections regarding these relationships within end-of-life care.

Next of Kin Perceptions of End of Life Care: An Investigation of Open-Ended Survey Responses to the VA’s Bereaved Family Survey (GP738)

2020 ◽  
Vol 60 (1) ◽  
pp. 268
Author(s):  
Caroline Gray ◽  
Maria Yefimova ◽  
Matthew McCaa ◽  
Joy Goebel ◽  
Scott Shreve ◽  
...  
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Life Care ◽  
Next Of Kin ◽  
Survey Responses ◽  
Bereaved Family

Physician perspectives on end-of-life care: Factors of race, specialty, and geography

2006 ◽  
Vol 4 (3) ◽  
pp. 257-271 ◽  
Author(s):  
CINDY L. CARTER ◽  
JANE G. ZAPKA ◽  
SUZANNE O'NEILL ◽  
SUSAN DesHARNAIS ◽  
WINNIE HENNESSY ◽  
...  
Keyword(s):  
Primary Care ◽  
African American ◽  
End Of Life ◽  
Racial Differences ◽  
End Of Life Care ◽  
Urban Areas ◽  
Primary Care Physicians ◽  
Working Relationships ◽  
Life Care ◽  
Physician Perspectives

Objectives: To describe physicians' end-of-life practices, perceptions regarding end-of-life care and characterize differences based upon physician specialty and demographic characteristics. To illuminate physicians' perceptions about differences among their African-American and Caucasian patients' preferences for end-of-life care.Design and methods: Twenty-four African-American and 16 Caucasian physicians (N= 40) participated in an in-person interview including 23 primary care physicians, 7 cardiologists, and 10 oncologists. Twenty-four practices were in urban areas and 16 were in rural counties.Results: Physicians perceived racial differences in preferences for end-of-life care between their Caucasian and African-American patients. Whereas oncologists and primary care physicians overwhelmingly reported having working relationships with hospice, only 57% of cardiologists reported having those contacts. African-American physicians were more likely than Caucasian physicians to perceive racial differences in their patients preferences for pain medication.Significance of results: Demographic factors such as race of physician and patient may impact the provider's perspective on end-of-life care including processes of care and communication with patients.

scholarly journals The Room as Metaphor: Next-of-Kin’s Experiences in End-of-Life Care

2015 ◽  
Vol 2015 ◽  
pp. 1-7
Author(s):  
Carina Werkander Harstäde ◽  
Åsa Roxberg
Keyword(s):  
End Of Life ◽  
Empirical Data ◽  
End Of Life Care ◽  
Theoretical Foundation ◽  
Life Care ◽  
Next Of Kin ◽  
Cancer Disease ◽  
Metaphorical Language ◽  
Inductive Approach

The “room” in end-of-life is a phenomenon that needs deeper understanding as it is a dimension that shows how health and suffering are shaped. Research on the concept of room was chosen as theoretical foundation in this study in order to reach a profound understanding of the next-of-kin’s “room” in end-of-life care. Lassenius’s hermeneutic interpretation in metaphorical language was used as an deductive-inductive approach to the empirical data. The data material comprised 33 interviews with next-of-kin about their experiences of end-of-life care when being close to a relative dying from a cancer disease. The analysis of the data formed four cases: the Standby, the Asylum, the Wall, and the Place. These cases lend their voices to the experiences of the next-of-kin in the study. The findings of this study explain and may well assist nurses to understand the experiences of being next-of-kin in end-of-life care as forming a room of rest from the suffering, a room of controlling the suffering, a room of hiding from the suffering, and a room of belonging.

Next of Kin Perspectives on the Experience of End-of-Life Care in a Community Setting

2007 ◽  
Vol 10 (5) ◽  
pp. 1101-1115 ◽  
Author(s):  
Kaye Norris ◽  
Melanie P. Merriman ◽  
J. Randall Curtis ◽  
Charles Asp ◽  
Lilly Tuholske ◽  
...  
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Community Setting ◽  
Life Care ◽  
Next Of Kin

scholarly journals Assessment of the quality of end-of-life care: translation and validation of the German version of the “Care of the Dying Evaluation” (CODE-GER) - a questionnaire for bereaved relatives

2020 ◽  
Vol 18 (1) ◽  
Author(s):  
Annika Vogt ◽  
Stephanie Stiel ◽  
Maria Heckel ◽  
Swantje Goebel ◽  
Sandra Stephanie Mai ◽  
...  
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Convergent Validity ◽  
International Studies ◽  
Life Care ◽  
Next Of Kin ◽  
Evaluation Code ◽  
Perceived Strain ◽  
Care Of The Dying

Abstract Background International studies indicate deficits in end-of-life care that can lead to distress for patients and their next-of-kin. The aim of the study was to translate and validate the “Care of the Dying Evaluation” (CODE) into German (CODE-GER). Methods Translation according to EORTC (European Organisation for Research and Treatment of Cancer) guidelines was followed by data collection to evaluate psychometric properties of CODE-GER. Participants were next-of-kin of patients who had died an expected death in two hospitals. They were invited to participate at least eight, but not later than 16 weeks after the patient’s death. To calculate construct validity, the Palliative care Outcome Scale (POS) was assessed. Difficulty and perceived strain of answering the questionnaire were assessed by a numeric scale (0–10). Results Out of 1137 next-of-kin eligible, 317 completed the questionnaire (response rate: 27.9%). Data from 237 main sample participants, 38 interraters and 55 next-of-kin who participated for repeated measurement were analysed. Overall internal consistency, α = 0.86, interrater reliability, ICC (1) = 0.79, and retest-reliability, ICC (1, 2) = 0.85, were good. Convergent validity between POS and CODE-GER, r = −.46, was satisfactory. A principal component analysis with varimax rotation showed a 7-factor solution. Difficulty, M = 2.2; SD ± 2.4, and perceived strain, M = 4.1; SD ± 3.0, of completing the questionnaire were rather low. Conclusion The results from the present study confirm CODE-GER as a reliable and valid instrument to assess the quality of care of the dying person. More over our study adds value to the original questionnaire by proposing a deepened analysis of obtained data. The development of seven subscales increases its potential for further surveys and research. Trial registration This study was registered retrospectively on the 25th of January 2018 at the German Clinical Trials Register (DRKS00013916).

scholarly journals RACIAL DISPARITIES IN HOSPICE USE AT THE END OF LIFE: FINDINGS FROM THE REGARDS STUDY

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S436-S436
Author(s):  
Katherine Ornstein ◽  
Orla C Sheehan ◽  
Jin Huang ◽  
J David Rhodes ◽  
David L Roth
Keyword(s):  
Racial Disparities ◽  
End Of Life ◽  
Racial Differences ◽  
Cause Of Death ◽  
End Of Life Care ◽  
Hospice Care ◽  
Life Care ◽  
Stroke Incidence ◽  
Regards Study ◽  
Hospice Use

Abstract Hospice supports patients and families through interdisciplinary care focused on symptom management and maximization of quality of life. Although hospice care confers well-documented benefits, it remains underutilized: many patients do not use it at all or enter care too late to receive any benefit. While racial disparities in hospice use have been documented, hospice utilization among non-white decedents remains understudied, particularly among those with non-cancer diagnoses. Therefore, we used the REasons for Geographic and Racial Differences in Stroke (REGARDS) study, a population-based investigation of stroke incidence with oversampling of Blacks and cause of death adjudication by expert panel review, linked to Medicare claims data to examine racial disparities in end-of-life care. We identified 1221 participants who died between 2013-2015 due to natural causes excluding sudden death. More than half (52.8%) used hospice during the last 6 months of life (median =15 days), with use among cancer decedents over 70%. Overall, Blacks were significantly less likely to use hospice (OR=0.570) compared to Whites in adjusted analyses. Among hospice users, Blacks did not significantly differ from Whites in length of stay. In analyses stratified by cause of death (dementia, cancer, CVD and other), Blacks were significantly less likely than Whites to use hospice for all causes of death other than dementia. Despite tremendous growth of hospice in recent decades, our findings suggest that this effective service remains highly underutilized among Blacks dying from cancer, CVD and other serious illnesses, suggesting a need for targeted intervention to eliminate disparities in quality end-of-life care.

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