scholarly journals Resisting the hospice narrative in pursuit of quality of life

2017 ◽  
Vol 1 (2) ◽  
Author(s):  
Jillian A. Tullis ◽  
Lori A. Roscoe ◽  
Patrick J. Dillon
Keyword(s):  
Quality Of Life ◽  
United States ◽  
End Of Life ◽  
Hospice Care ◽  
Participant Observation ◽  
Family Members ◽  
The United States ◽  
Curative Treatment ◽  
Model Of Care

The overall hospice philosophy is to provide care that enhances a dying person’s quality of life. Most individual’s quality of life is improved when they embrace hospice eligibility and reimbursement requirements, such as stopping burdensome and ineffective curative treatment, addressing pain and other symptoms, and seeking avenues for closure. However, this institutionalized prescription for enhancing quality of life at the end of life does not work for all patients. This article considers what happens when patients’ personal definitions of quality of life at the end of life resist the prevailing narrative of appropriate hospice care. Using a series of examples from more than 600 hours of participant observation, our findings reveal narratives of resistance that fall into three themes: i) patients and/or family members who deny the imminence of death despite an admission to hospice; ii) patients who request treatments usually defined as curative; and iii) patients who resist the organizational constraints imposed by the institutionalization of the hospice model of care. Analysis of these themes illustrates the subjective nature of quality of life at the end of life and the pressures of standardization that may accompany the growth and maturity of the hospice industry in the United States.

High–Tech, Aggressive Palliative Care: In the Service of Quality of Life

1993 ◽  
Vol 9 (1) ◽  
pp. 37-41 ◽  
Author(s):  
David M. Dush
Keyword(s):  
Quality Of Life ◽  
United States ◽  
Health Care ◽  
Palliative Care ◽  
Hospice Care ◽  
High Technology ◽  
The United States ◽  
High Tech ◽  
Hospice Movement

The hospice movement grew in part as a reaction to the perception that modern medical care had become too technological at the expense of being impersonal and insensitive to human psychological and spiritual concerns. In the United States, the institutionalization of hospice care under Medicare and other reimbursement systems has further established hospice as an alternative to high-technology, high-cost care. The present paper examines the question: What if hospice care becomes itself high-technology, aggressive, costly health care in order to remain true to its goal of maximizing quality of life? Implications for the goals and philosophical underpinnings of palliative care are discussed.

A Review of Studies of the Association of Vision-Related Quality of Life with Measures of Visual Function and Structure in Patients with Glaucoma in the United States

2021 ◽  
Vol 28 (3) ◽  
pp. 265-276
Author(s):  
Naira Khachatryan ◽  
Maxwell Pistilli ◽  
Maureen G. Maguire ◽  
Angela Y. Chang ◽  
Marissa R. Samuels ◽  
...  
Keyword(s):  
Quality Of Life ◽  
United States ◽  
Visual Function ◽  
The United States ◽  
Related Quality

What is Happening in the United States? How Social Classes Influence the Political Life of the Country and its Health and Quality of Life

2021 ◽  
pp. 002073142199484
Author(s):  
Vicente Navarro
Keyword(s):  
Quality Of Life ◽  
United States ◽  
Access To Health Care ◽  
Universal Access ◽  
The United States ◽  
Political Context ◽  
Political Life ◽  
The Political ◽  
Race And Gender

This article analyses the political changes that have been occurring in the United States (including the elections for the presidency of the country) and their consequences for the health and quality of life of the population. A major thesis of this article is that there is a need to analyse, besides race and gender, other categories of power - such as social class - in order to understand what happens in the country. While the class structure of the United States is similar to that of major Western European countries, the political context is very different. The U.S. political context has resulted in the very limited power of its working class, which explains the scarcity of labor, political and social rights in the country, such as universal access to health care.

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.

scholarly journals Anxiety- and Health-Related Quality of Life Among Patients With Breast Cancer: A Cross-Cultural Comparison of China and the United States

2018 ◽  
pp. 1-9
Author(s):  
Jin You ◽  
Qian Lu ◽  
Michael J. Zvolensky ◽  
Zhiqiang Meng ◽  
Kay Garcia ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Quality Of Life ◽  
United States ◽  
Trait Anxiety ◽  
State Anxiety ◽  
Cultural Context ◽  
The United States ◽  
Cross Cultural ◽  
Chinese Patients

Purpose Literature has documented the prevalence of anxiety and its adverse effect on quality of life among patients with breast cancer from Western countries, yet cross-cultural examinations with non-Western patients are rare. This cross-cultural study investigated differences in anxiety and its association with quality of life between US and Chinese patients with breast cancer. Methods Patients with breast cancer from the United States and China completed measures for anxiety (Spielberger State-Trait Anxiety Inventory) and quality of life (Functional Assessment of Cancer Therapy-Breast). Results After controlling for demographic and medical characteristics, Chinese patients reported higher levels of trait and state anxiety than US patients. Although there was an association between anxiety and quality of life in both groups of patients, the association between state anxiety and quality of life was stronger among Chinese patients than among US patients, with the association between trait anxiety and quality of life the same between the two cultural samples. Conclusion These findings suggest that anxiety and its association with quality of life among patients with breast cancer varies depending on cultural context, which reveals greater anxiety and poorer quality of life among Chinese patients compared with US patients. This suggests greater unmet psychosocial needs among Chinese patients and highlights the need to build comprehensive cancer care systems for a better quality of life in Chinese populations.

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