scholarly journals The decision-making process in families of terminal ICU patients

Psico-USF ◽  
2019 ◽  
Vol 24 (3) ◽  
pp. 437-448
Author(s):  
Mayla Cosmo Monteiro ◽  
Andrea Seixas Magalhães ◽  
Terezinha Féres-Carneiro ◽  
Cristina Ribeiro Dantas
Keyword(s):  
Decision Making ◽  
Palliative Care ◽  
End Of Life ◽  
Medical Staff ◽  
Family Members ◽  
Decision Making Process ◽  
Qualitative Descriptive ◽  
End Of Life Decision ◽  
The Relationship ◽  
Life Decision

Abstract The objective of this research is to investigate family members’ perceptions as to the end-of-life decision-making process in an ICU. The authors conducted a qualitative descriptive study in which they interviewed six family members of critically ill patients admitted to the ICU of a private hospital. Five categories of analysis emerged from the examination of the material. This study will discuss two of those categories: the decision-making process and the relationship with the medical staff. The results indicate that family members were satisfied with communication with the medical staff, an important aspect for the decision-making process. Within this context, the shared model, prioritization of palliative care and identification of futile treatments prevailed, aimed at ensuring the patient’s comfort and dignity at the end of life. The results also reveal the need for integration of palliative care in ICUs, particularly in end-of-life situations.

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.

Palliative care nursing involvement in end-of-life decision-making: Qualitative secondary analysis

2018 ◽  
Vol 26 (6) ◽  
pp. 1680-1695 ◽  
Author(s):  
Pablo Hernández-Marrero ◽  
Emília Fradique ◽  
Sandra Martins Pereira
Keyword(s):  
Decision Making ◽  
Palliative Care ◽  
End Of Life ◽  
Secondary Analysis ◽  
Controversial Issues ◽  
End Of Life Decisions ◽  
Ethics Research ◽  
Qualitative Secondary Analysis ◽  
End Of Life Decision ◽  
Life Decision

Background: Nurses are the largest professional group in healthcare and those who make more decisions. In 2014, the Committee on Bioethics of the Council of Europe launched the “Guide on the decision-making process regarding medical treatment in end-of-life situations” (hereinafter, Guide), aiming at improving decision-making processes and empowering professionals in making end-of-life decisions. The Guide does not mention nurses explicitly. Objectives: To analyze the ethical principles most valued by nurses working in palliative care when making end-of-life decisions and investigate if they are consistent with the framework and recommendations of the Guide; to identify what disputed/controversial issues are more frequent in these nurses’ current end-of-life care practices. Design: Qualitative secondary analysis. Participants/context: Three qualitative datasets including 32 interviews from previous studies with nurses working in palliative care in Portugal. Ethical consideration: Ethical approval was obtained from the Ethics Research Lab of the Instituto de Bioética (Ethics Research Lab of the Institute of Bioethics) (Ref.04.2015). Ethical procedures are thoroughly described. Findings: All participant nurses referred to autonomy as an ethical principle paramount in end-of-life decision-making. They were commonly involved in end-of-life decision-making. Palliative sedation and communication were the most mentioned disputed/controversial issues. Discussion: Autonomy was highly valued in end-of-life care and decision-making. Nurses expressed major concerns in assessing patients’ preferences, wishes, and promoting advance care planning. Nurses working in palliative care in Portugal were highly involved in end-of-life decision-making. These processes embraced a collective, inclusive approach. Palliative sedation was the most mentioned disputed issue, which is aligned with previous findings. Communication also emerged as a sensitive ethical issue; it is surprising, however, that only three nurses referred to it. Conclusion: While the Guide does not explicitly mention nurses in its content, this study shows that nurses working in palliative care in Portugal are involved in these processes. Further research is needed on nurses’ involvement and practices in end-of-life decision-making.

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.

Beyond the hour of death: Family experiences of grief and bereavement following an end-of-life hospitalization in the intensive care unit

2020 ◽  
pp. 136345932094647
Author(s):  
Julia I Bandini
Keyword(s):  
Intensive Care Unit ◽  
Decision Making ◽  
Intensive Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Family Members ◽  
Life Care ◽  
Family Experiences ◽  
End Of Life Decision ◽  
Life Decision

End-of-life decision-making is an important area of research, and few sociological studies have considered family grief in light of end-of-life decision-making in the hospital. Drawing on in-depth interviews with family members in the intensive care unit (ICU) during an end-of-life hospitalization and into their bereavement period up to six months after the death of the patient, this article examines bereaved family members’ experiences of grief by examining three aspects from the end-of-life hospitalization and decision-making in the ICU that informed their subsequent bereavement experiences. First, this article explores how the process of advance care planning (ACP) shaped family experiences of grief, by demonstrating that even prior informal conversations around end-of-life care outside of having an advance directive in the hospital was beneficial for family members both during the hospitalization and afterwards in bereavement. Second, clinicians’ compassionate caring for both patients and families through the “little things” or small gestures were important to families during the end-of-life hospitalization and afterwards in bereavement. Third, the transition time in the hospital before the patient’s death facilitated family experiences of grief by providing a sense of support and meaning in bereavement. The findings have implications for clinicians who provide end-of-life care by highlighting salient aspects from the hospitalization that may shape family grief following the patient’s death. Most importantly, the notion that ACP as a social process may be a “gift” to families during end-of-life decision-making and carry through into bereavement can serve as a motivator to engage patients in ACP.

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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