The privilege of a good death: An intersectional perspective on dying a good death in America

2021 ◽  
Author(s):  
Miranda Corpora
Keyword(s):  
Conceptual Framework ◽  
End Of Life ◽  
End Of Life Care ◽  
Social Identities ◽  
Case Vignette ◽  
Good Death ◽  
Diverse Population ◽  
Life Care ◽  
Intersectionality Theory ◽  
The Relationship

Abstract All individuals deserve an equitable opportunity to achieve a good death. Unfortunately, access to end-of-life care and services is largely unequal on the basis of race, gender, class, and other social identities. We need to understand how individuals with multiple marginalized identities face different access in attaining a good death and use this knowledge to bring equity to end-of- life care. The conceptual framework for this argument derives from intersectionality theory and the existing disparities in end-of-life care. This argument sheds light on the relationship between intersectionality and a good death, demonstrated by a case vignette, and suggests that the more marginalized social identities one has, the more difficult their access to a good death. Because it is particularly important to both recognize and actively combat these inequities, I offer three practical strategies for end-of-life researchers and practitioners. For the sake of our increasingly diverse population, advancements in end-of-life care must be made to facilitate a good death for all.

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 When Conscience Wavers. Some Reflections on the Normalization of Euthanasia in Belgium

2021 ◽  
pp. 25-37
Author(s):  
Willem Lemmens
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Psychiatric Patients ◽  
Therapeutic Option ◽  
Good Death ◽  
Life Care ◽  
Philosophical Perspective ◽  
Established Fact ◽  
The Law

AbstractIn this chapter, I evaluate from a philosophical perspective the ongoing discussions in the Belgian civil society triggered by the euthanasia law and its implementation in end-of-life care since 2002. I challenge the idea that the so-called normalization of euthanasia is an established fact and I contend that the ongoing discussions on the possible abuses of the law and the practice of euthanasia are unavoidable. I see three reasons for this. First, in contrast with what some think, euthanasia can never become a “normal” therapeutic option, that could be integrated in standard medical practice. Euthanasia is, by its very nature, a transgression of a fundamental moral taboo and will thus always, however liberal the law might be, challenge the conscience of some physicians. Secondly, because of its transgressive meaning, every act of euthanasia can always be contested by family members or the larger society. This is the case when euthanasia is given to patients who are not terminally ill (such as psychiatric patients), but also when a physician performs euthanasia in an undignified and negligent way. Thirdly, the very existence of the law puts pressure not only on patients and physicians but also the larger society. By making euthanasia into a symbol of the good death, a whole society loses its sensitivity for the intrinsic transgressive nature of euthanasia and creates all sorts of strategies to mask the wavering of conscience that results from this collective negligence. There is no way, so I conclude, to avoid this. The wavering of conscience will continue to haunt the end-of-life care in Belgium as long as the law on euthanasia remains as it is.

What is a good death? A critical discourse policy analysis

2020 ◽  
pp. bmjspcare-2019-002173
Author(s):  
Erica Borgstrom
Keyword(s):  
Discourse Analysis ◽  
Critical Discourse Analysis ◽  
End Of Life ◽  
End Of Life Care ◽  
Critical Discourse ◽  
Good Death ◽  
Complex Nature ◽  
Life Care ◽  
Advance Care ◽  
Motivating Factor

ObjectiveThe concept of a good death is a motivating factor for end of life care policy; this article examines what English end-of-life care (EOLC) policy defines as a good death.MethodsCritical discourse analysis of policy documents and policy-promoting materials published between 2008 and 2016.ResultsPolicy explicitly defines a good death as having the following attributes: being treated as an individual, with dignity and respect; being without pain and other symptoms; being in familiar surroundings and being in the company of close family and/or friends. Critical discourse analysis of 54 documents found that rather than just being an outcome or event, descriptions of what makes a death good also include many processes. A more extended definition includes: the person receives holistic EOLC; the dying person is treated with dignity and respect; the death is not sudden and unexpected; people are prepared and have ideally done some advance care planning; people are aware that someone is dying and openly discuss this; on knowing the dying person’s preferences, all involved are to work towards achieving these; the place of death is important; the person’s family are involved and the needs of the bereaved are considered.ConclusionThis analysis indicates the complex nature of the current discourses around good death in EOLC policy, which often focuses on care rather than death. Policy should focus on outlining what quality end-of-life care looks like, rather than assume ‘good death’ is a suitable outcome statement.

scholarly journals Meeting complexity with collaboration: a proposed conceptual framework for participatory community-based music therapy research in end of life-care

2018 ◽  
Vol 2 (3) ◽  
Author(s):  
Wolfgang Schmid
Keyword(s):  
Music Therapy ◽  
Conceptual Framework ◽  
End Of Life ◽  
End Of Life Care ◽  
Quality Care ◽  
Life Care ◽  
Educational Strategies ◽  
Community Based ◽  
Team Members ◽  
Participatory Music

Research in end-of-life care is complex with specific ethical and practical challenges related to epistemology, methodology and recruitment of people approaching the end of life. However, to ensure the provision of high-quality care research efforts need to be aligned with the priorities of patients, their families, and interdisciplinary team members. A more systematic engagement of all three groups in research is needed to promote tailored and appropriate end-of-life care. In this methodological article I propose a conceptual framework for community-based participatory music therapy research in end-of-life care scenarios as one promising strategy to respond to ethical and practical challenges, to handle complexity and advance integration of perspectives. The conceptual framework consists of two thematic clusters i) Participlinarity across contexts, and ii) Community-based participatory music therapy research in end-of-life care scenarios. Though in the early stages of development, the framework addresses issues of educational strategies and continuity of care, and aims to contribute to innovative music therapy research in the future.

Comparison of Thai older patients’ wishes and nurses’ perceptions regarding end-of-life care

2019 ◽  
Vol 26 (7-8) ◽  
pp. 2006-2015 ◽  
Author(s):  
Manchumad Manjavong ◽  
Varalak Srinonprasert ◽  
Panita Limpawattana ◽  
Jarin Chindaprasirt ◽  
Srivieng Pairojkul ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Older Patients ◽  
Cross Sectional Study ◽  
Self Report ◽  
Good Death ◽  
Life Care ◽  
Cross Sectional ◽  
Adequate Knowledge

Background: Achieving a “good death” is a major goal of palliative care. Nurses play a key role in the end-of-life care of older patients. Understanding the perceptions of both older patients and nurses in this area could help improve care during this period. Objectives: To examine and compare the preferences and perceptions of older patients and nurses with regard to what they feel constitutes a “good death.” Research design: A cross-sectional study. Participants and research context: This study employed a self-report questionnaire that asked about various options for end-of-life care. It was distributed to older patients who attended the outpatient clinic of internal medicine and nurses who worked at two medical schools in Thailand from September 2017 to February 2018. Patients were asked to respond to the questions as if they were terminally ill, and nurses were asked to imagine how older patients would answer the questions. Ethical consideration: Approval from Institutional Review Board was obtained. Findings: A total of 608 patients and 665 nurses responded to the survey. Nurses agreed with concepts of palliative care, but they rated themselves as having poor knowledge. The patient respondents felt that it was most important that they receive the full truth about their illnesses (29.2%). The nurses thought the most important issue was relief of uncomfortable symptoms (25.2%). On seven out of the 13 questions, nurses overestimated the importance of the relevant issue to patients and underestimated the importance on one question (p < 0.05). Discussion: Both nurses and older patients signified concepts of palliative care, but nurses felt that they lacked adequate knowledge. Nurses estimated that patients would have positive attitudes toward autonomy and the closure of life affairs to a significantly greater degree than the patient respondents. Conclusions: We recommend that palliative care education be improved and that steps be taken to allow for more effective nurse–patient communication with regard to the patients’ end-of-life wishes.

scholarly journals Dying From Cancer

2017 ◽  
Vol 4 (2) ◽  
pp. 69-73 ◽  
Author(s):  
Larry D Cripe ◽  
Richard M Frankel
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Symptom Burden ◽  
Emergent Property ◽  
Life Care ◽  
Shared Experiences ◽  
Medical Oncologists ◽  
Informed Preferences ◽  
Timely Fashion ◽  
The Relationship

Medical oncologists and patients with advanced cancer struggle to discuss prognosis, goals, options, and values in a timely fashion. As a consequence, many patients die receiving aggressive treatment potentially inconsistent with their fully informed preferences and experience increased symptom burden and distress. The goals of patient - oncologist communication include exchanging information, building relationship, and engaging in shared decisions. Empathy is perhaps especially essential to effective patient - oncologist communication when the end of life is approaching. We speculate that, in addition to being a skilled response to a patient’s negative emotions, empathy is an emergent property of the relationship that allows the patient and oncologist to imagine what it will be like to navigate the transition from living with to dying from cancer; and to prepare for the transition. We propose that effective empathy: 1) requires an attentive, curious and imaginative physician; 2) acknowledges the complex and shifting goals as the end of life approaches; and 3) begins with a willingness of physicians to check in and find out what she may have misunderstood or misperceived. Empathy in end of life conversations cultivates the shared experiences necessary to co-create the new goals of care that underlie excellent end of life care.

Countertransference and ethics: A perspective on clinical dilemmas in end-of-life decisions

2003 ◽  
Vol 1 (4) ◽  
pp. 367-375 ◽  
Author(s):  
BRIAN J. KELLY ◽  
FRANCIS T. VARGHESE ◽  
DAN PELUSI
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Assisted Suicide ◽  
Clinical Decision Making ◽  
Ethical Dilemmas ◽  
Clinical Decision ◽  
Life Care ◽  
End Of Life Decisions ◽  
The Relationship ◽  
Dying Patient

Ethical dilemmas in end-of-life care, such as the request for assisted suicide, must be understood in the context of the relationship that exists between patients and the clinicians treating them. This context includes the way health professionals respond to the tasks in caring for a dying patient. This article reviews the literature exploring the factors the influence clinical decision making at the end of life. The interplay of ethics, countertransference and transference are explained in detail.

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