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.

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.

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.

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.

scholarly journals ‘It all depends!’ – Preferences for place of care and place of death in terminally ill patients and their carers

2019 ◽  
Author(s):  
Katrin Gerber ◽  
BARBARA HAYES ◽  
CHRISTINA BRYANT
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Terminally Ill ◽  
Qualitative Description ◽  
Place Of Death ◽  
Care Hospital ◽  
Structured Interviews ◽  
Terminally Ill Patients ◽  
End Of Life Decision ◽  
Life Decision

<div><b>Background</b>: It is often suggested that terminally ill patients favour end-of-life care at home. Yet, it is unclear how these preferences are formed, if the process is similar for patients and carers, and if there are discrepancies between preferences for place of care and place of death. Understanding these nuances is essential to support people in their decision-making and ultimately provide better care at the end of life.</div><div><b>Aim</b>: To gain an in-depth understanding of how terminally ill patients and their family caregivers make decisions about preferred place of care and place of death.</div><div>Design: Semi-structured interviews with patients and carers, which were analysed thematically using qualitative description.</div><div><b>Setting/ participants</b>: A total of 17 participants (eight patients and nine carers) recruited from an acute palliative care hospital ward, a sub-acute hospice unit, and a palliative</div><div>homecare organisation in Melbourne, Australia.</div><div><b>Results</b>: The process of forming preferences for place of care and place of death was shaped by uncertainty relating to the illness, the carer and the services. Participants dealt with this uncertainty on a level of thoughts, emotions, and actions. At the end of this process, participants expressed their choices as conditional, personal, relational, contextual and flexible preferences.</div><div><b>Conclusions</b>: End-of-life decision-making rarely ends with a clear and stable choice. Understanding the reasons for the malleability of preferences and the process of how they are</div><div>formed has implications for both clinicians and researchers.</div>

The meanings of “hope” to patients with cancer, nearing the end of their lives

2006 ◽  
Vol 24 (18_suppl) ◽  
pp. 18567-18567
Author(s):  
I. N. Olver ◽  
J. A. Eliott
Keyword(s):  
Decision Making ◽  
Discourse Analysis ◽  
Sample Size ◽  
End Of Life ◽  
Structured Interviews ◽  
Patients With Cancer ◽  
Life Lessons ◽  
Data Saturation ◽  
End Of Life Decision ◽  
Life Decision

18567 Background: In two studies of the speech of patients with cancer about end-of-life decision-making, the word hope was often spontaneously used. In 23 patients earlier in their disease there was a difference between hope used as a noun, often objective, outside the patient’s control, and presented as “no hope”, or as a verb which was directed by patients and facilitated imagining a positive future (Qual Health Res 2002, 12: 173–193). In a second study 28 patients judged within 3 months of dying, following unprompted use of hope during interview, were specifically prompted to talk about hope. Methods: Discourse analysis was used to analyze the speech from the semi-structured interviews of the patients. The sample size was determined by data saturation. Results: All in the second study were Caucasian, average age 61, 15 males, 18 had partners and 19 were Christian, 1 Druid, and 8 listing no religion. Ten patients made reference to hope as variable in amount. In general the more the better, but even 1%, while trivial scientifically, may be important personally. The problem with quantifiable hope is that it is perceived to dwindle with the medical prognosis with which “no hope” is most often identified. Twenty patients hoped for a longer life although 19 had specifically indicated that they were dying, suggesting that this hope was not death denying. Most wanted more time to achieve tasks and be with family. Hoping recognized uncertainty yet attested to the value patients placed on various activities. Eight talked of hoping for a cure, although this was not overwhelming in the present. Some mentioned the possibility of a miracle cure, reinforced by the construction that medicine gives hope. Hope sometimes shifted from life to either an acceptable dying in 8 patients or to focus on others. The legacy to others could be objects or life lessons. Hopes can be shared by partners and can change. Two patients spoke of hope sourced from God and as enduring beyond death. Conclusions: Patients found it challenging to talk of hope in the abstract. Hope can be positive and sustaining or disillusioning when not attained. No significant financial relationships to disclose.

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

scholarly journals What hinders and helps in the end‐of‐life decision‐making process for children: parents’ and physicians’ views

2022 ◽  
Author(s):  
Ilse H. Zaal‐Schuller ◽  
Rosa Geurtzen ◽  
Dick L. Willems ◽  
Mirjam A. Vos ◽  
Marije Hogeveen
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Decision Making Process ◽  
End Of Life Decision ◽  
Life Decision
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