Ethical issues in communication of diagnosis and end-of-life decision-making process in some of the Romanian Roma communities

2012 ◽  
Vol 16 (3) ◽  
pp. 483-497 ◽  
Author(s):  
Gabriel Roman ◽  
Angela Enache ◽  
Andrada Pârvu ◽  
Rodica Gramma ◽  
Ştefana Maria Moisa ◽  
...  
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Ethical Issues ◽  
Decision Making Process ◽  
End Of Life Decision ◽  
Life Decision

Sense of responsibility in ICU end-of-life decision-making: Relatives’ experiences

2017 ◽  
Vol 26 (1) ◽  
pp. 270-279 ◽  
Author(s):  
Ranveig Lind
Keyword(s):  
Intensive Care Unit ◽  
Decision Making ◽  
Intensive Care ◽  
End Of Life ◽  
Secondary Analysis ◽  
Active Role ◽  
Decision Making Process ◽  
Science Data ◽  
End Of Life Decision ◽  
Life Decision

Background: Relatives of intensive care unit patients who lack or have reduced capacity to consent are entitled to information and participation in decision-making together with the patient. Practice varies with legislation in different countries. In Norway, crucial decisions such as withdrawing treatment are made by clinicians, usually morally justified to relatives with reference to the principle of non-maleficence. The relatives should, however, be consulted about whether they know what the patient would have wished in the situation. Research objectives: To examine and describe relatives’ experiences of responsibility in the intensive care unit decision-making process. Research design: A secondary analysis of interviews with bereaved relatives of intensive care unit patients was performed, using a narrative analytical approach. Participants and research context: In all, 27 relatives of 21 deceased intensive care unit patients were interviewed about their experiences from the end-of-life decision-making process. Most interviews took place in the participants’ homes, 3–12 months after the patient’s death. Ethical considerations: Based on informed consent, the study was approved by the Data Protection Official of the Norwegian Social Science Data Services and by the Regional Committee for Medical and Health Research Ethics. Findings: The results show that intensive care unit relatives experienced a sense of responsibility in the decision-making process, independently of clinicians’ intention of sparing them. Some found this troublesome. Three different variants of participation were revealed, ranging from paternalism to a more active role for relatives. Discussion: For the study participants, the sense of responsibility reflects the fact that ethics and responsibility are grounded in the individual’s relationship to other people. Relatives need to be included in a continuous dialogue over time to understand decisions and responsibility. Conclusion: Nurses and physicians should acknowledge and address relatives’ sense of responsibility, include them in regular dialogue and help them separate their responsibility from that of the clinicians.

The enactment stage of end-of-life decision-making for children

2018 ◽  
Vol 17 (2) ◽  
pp. 165-171
Author(s):  
Jane Elizabeth Sullivan ◽  
Lynn Heather Gillam ◽  
Paul Terence Monagle
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Medical Intervention ◽  
Process Time ◽  
Decision Making Process ◽  
Structured Interviews ◽  
Bereaved Parents ◽  
Process Factors ◽  
End Of Life Decision ◽  
Life Decision

AbstractObjectivesTypically pediatric end-of-life decision-making studies have examined the decision-making process, factors, and doctors’ and parents’ roles. Less attention has focussed on what happens after an end-of-life decision is made; that is, decision enactment and its outcome. This study explored the views and experiences of bereaved parents in end-of-life decision-making for their child. Findings reported relate to parents’ experiences of acting on their decision. It is argued that this is one significant stage of the decision-making process.MethodsA qualitative methodology was used. Semi-structured interviews were conducted with bereaved parents, who had discussed end-of-life decisions for their child who had a life-limiting condition and who had died. Data were thematically analysed.ResultsTwenty-five bereaved parents participated. Findings indicate that, despite differences in context, including the child’s condition and age, end-of-life decision-making did not end when an end-of-life decision was made. Enacting the decision was the next stage in a process. Time intervals between stages and enactment pathways varied, but the enactment was always distinguishable as a separate stage. Decision enactment involved making further decisions - parents needed to discern the appropriate time to implement their decision to withdraw or withhold life-sustaining medical treatment. Unexpected events, including other people’s actions, impacted on parents enacting their decision in the way they had planned. Several parents had to re-implement decisions when their child recovered from serious health issues without medical intervention.Significance of resultsA novel, critical finding was that parents experienced end-of-life decision-making as a sequence of interconnected stages, the final stage being enactment. The enactment stage involved further decision-making. End-of-life decision-making is better understood as a process rather than a discrete once-off event. The enactment stage has particular emotional and practical implications for parents. Greater understanding of this stage can improve clinician’s support for parents as they care for their child.

End-of-Life Decision Making across Cultures

2011 ◽  
Vol 39 (2) ◽  
pp. 201-214 ◽  
Author(s):  
Robert H. Blank
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Ethical Issues ◽  
The United States ◽  
Special Issue ◽  
The Past ◽  
Life Saving ◽  
Demographic Patterns ◽  
End Of Life Decision ◽  
Life Decision

As is evident from the other articles in this special issue, end-of-life treatment has engendered a vigorous dialogue in the United States over the past few decades because decision making at the end of life raises broad and difficult ethical issues that touch on health professionals, patients, and their families. This concern is exacerbated by the high cost related to the end of life in the U.S. Moreover, in light of demographic patterns, progressively scarce health care resources, and an expanding array of life-saving technologies, decisions at the end of life are becoming problematic matters of public and, thus, scholarly concern in most countries. Issues at the end of life are central not only to bioethics but also raise important ancillary policy dimensions.

Intensive care nurses’ involvement in the end-of-life process – perspectives of relatives

2012 ◽  
Vol 19 (5) ◽  
pp. 666-676 ◽  
Author(s):  
Ranveig Lind ◽  
Geir F Lorem ◽  
Per Nortvedt ◽  
Olav Hevrøy
Keyword(s):  
Decision Making ◽  
Intensive Care ◽  
End Of Life ◽  
Decision Making Process ◽  
Intensive Care Nurses ◽  
Decision Making Processes ◽  
Nurses Role ◽  
End Of Life Decision ◽  
Life Decision

In this article, we report findings from a qualitative study that explored how the relatives of intensive care unit patients experienced the nurses’ role and relationship with them in the end-of-life decision-making processes. In all, 27 relatives of 21 deceased patients were interviewed about their experiences in this challenging ethical issue. The findings reveal that despite bedside experiences of care, compassion and comfort, the nurses were perceived as vague and evasive in their communication, and the relatives missed a long-term perspective in the dialogue. Few experienced that nurses participated in meetings with doctors and relatives. The ethical consequences imply increased loneliness and uncertainty, and the experience that the relatives themselves have the responsibility of obtaining information and understanding their role in the decision-making process. The relatives therefore felt that the nurses could have been more involved in the process.

scholarly journals 重審生命倫理學視域下身體話語的地位——以臨終決策為線索

2015 ◽  
Vol 13 (1) ◽  
pp. 83-94
Author(s):  
Jue WANG
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Personal Identity ◽  
Ethical Issues ◽  
Family Members ◽  
The Body ◽  
Confucian Ethics ◽  
Individual Autonomy ◽  
End Of Life Decision ◽  
Life Decision

LANGUAGE NOTE | Document text in Chinese; abstract also in English.對於生命終極的關懷，臨終決策是現代生命倫理學不可忽視的一個重大話題。本文試圖從身體的角度論證當代生命倫理學話語由於失落了身體而陷入一場深刻的危機。具體而言，本文將通過對臨終決策困境的分析展示危機的根源，論證身體經驗及相關倫理關係是生命倫理學不可或缺的基礎。作者認為，只有作為身體倫理，生命倫理學才能充分實現它的學術追問和學科理念。身心二元論只是一個虛構，身體性存在才是人格同一性的真正基礎。因此，建設生命倫理學不只是擁抱某些抽象的自主原則，或是某些精緻的道德主體的體系，更關鍵的問題是要回答“我們希望成為何等樣的人，希望將來生活在怎樣的世界中”。How is the body articulated in language and discourse during end-of-life decision making? How do individuals and their family members represent and define the relationships between person, body, and self? Recently, studies have been conducted on the decision-making process in the field of end-of-life care. Most researchers focus on patients’ determination (vis-à-vis physicians’ beneficence), which gives rise to a plethora of issues, such as patients’ self-identity, self-continuity, relationships, freedom of choice,and rights.In this paper, end-of-life decision making is considered from the perspective of the relationship between the body and one’s personal identity. It is argued that the current bioethical discourse on individual autonomy and patients’ rights is inadequate to address the ethical issues relating to end-of-life decision making. Instead of purely theoretically conceptualizing the sovereignty of the patient over his or her body, the author explores the issue in relation to the phenomenology of lived-body experience as described by the American bioethicist Margret P. Battin. The rights available to the patient are not the only significant issue during end-of-life decision-making; aspects of the patient’s physicality are also relevant. Discourse on representations of the body and embodied action/autonomy aids our understanding of end-of-life choices. Finally, these body-related issues are linked with the Confucian understanding of what a person is. According to Confucian ethics, personal identity should not be viewed as an abstract “thing”; instead, it is defined by a person’s relationships with others, especially family members, in his/her most vulnerable moments.DOWNLOAD HISTORY | This article has been downloaded 138 times in Digital Commons before migrating into this platform.

End-of-Life Decision Making in the Seriously Ill Hospitalized Patient: An Organizing Framework and Results of a Preliminary Study

2000 ◽  
Vol 16 (1_suppl) ◽  
pp. S31-S39 ◽  
Author(s):  
Daren K. Heyland ◽  
Joan Tranmer ◽  
Deb Feldman-Stewart
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Information Exchange ◽  
End Of Life Care ◽  
Decision Making Process ◽  
Life Care ◽  
Preliminary Study ◽  
End Of Life Decision ◽  
Seriously Ill ◽  
Life Decision

Recent studies of patient/family satisfaction with end-of-life care suggest that improvements in communication and decision making are likely to have the greatest impact on improving the quality of end-of-life care. The apparent failure of recent studies specifically designed to improve decision making strongly suggest that there are powerful determinants of the decision making process that are not completely understood. In this paper, we present an organizing framework that describes the decision making process and breaks it into three analytic steps: information exchange, deliberation, and making the decision. In addition, we report the results of a preliminary study of end-of-life decision making that incorporates aspects of this organizing framework. Thirty-seven seriously ill hospitalized patients were interviewed. The majority wanted to share decisional responsibility with physicians. We demonstrated the feasibility of measuring certain aspects of the decision making process in such patients. By providing and using a framework related to end-of-life decision making, we hope to better understand the complex interaction and processes between dying patients, caregivers, and physicians.

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