scholarly journals End-of-Life Decision Making in Palliative Care and Recommendations of the Council of Europe: Qualitative Secondary Analysis of Interviews and Observation Field Notes

2018 ◽  
Vol 21 (5) ◽  
pp. 604-615 ◽  
Author(s):  
Sandra Martins Pereira ◽  
Emília Fradique ◽  
Pablo Hernández-Marrero ◽  
Keyword(s):  
Decision Making ◽  
Palliative Care ◽  
End Of Life ◽  
Secondary Analysis ◽  
Council Of Europe ◽  
Field Notes ◽  
Qualitative Secondary Analysis ◽  
End Of Life Decision ◽  
Life Decision

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.

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.

End of life decision making in healthcare in the prism of Council of Europe’s Human Rights Standards

2021 ◽  
Vol 2(24) ◽  
pp. 137-155
Author(s):  
Daria Bieńkowska
Keyword(s):  
Decision Making ◽  
Human Rights ◽  
End Of Life ◽  
Assisted Suicide ◽  
Individual Autonomy ◽  
Council Of Europe ◽  
The Subject ◽  
Human Rights Standards ◽  
End Of Life Decision ◽  
Life Decision

The issue of decisions made at the end of life relating to the so-called “Right to death”, “death in dignity”, which in the literature on the subject is referred to as end-of-life decision making in the legal and medical space, arouses the interest of lawyers and doctors, and due to the specific gravity of the topic, it is also the subject of public debate. This article presents the issue of end-of-life decision making in health care in the light of the standards of the Council of Europe. The main purpose of the problem outlined in this way will be to analyze the legal admissibility of decisions concerning the end of life at the request of the interested person in the legal and human perspective. The summary indicates that despite the lack of a consensus in contemporary Europe as to the understanding of human rights, and hence the admissibility of active euthanasia and assisted suicide, the situation may change with the increasing emphasis on individual autonomy in medical law.

scholarly journals “It was one of those complicated cases”: health practitioners’ perspectives and practices of providing end-of-life care for people with profound intellectual and multiple disability

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Hille Voss ◽  
April Loxton ◽  
Julie Anderson ◽  
Joanne Watson
Keyword(s):  
Decision Making ◽  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Life Care ◽  
Multiple Disability ◽  
Health And Social Care ◽  
Health Practitioners ◽  
End Of Life Decision ◽  
Life Decision

Abstract Background Due to developments in health and social care, people with profound intellectual and multiple disability (PIMD) are living longer than ever before, meaning they are increasingly experiencing life-threatening health conditions requiring palliative care. Little is known about providing end-of-life care for people with PIMD. The aim of this study was to explore health practitioners’ perspectives and practices relating to end-of-life decision-making and planning for people with PIMD. Methods Seven in-depth semi-structured interviews were conducted with health practitioners employed in a range of hospital and community services throughout Melbourne, Australia. Questions were designed to gather information about their experience, perceptions, and attitudes relating to people with PIMD during and at the end of their life. Each interview, ranging from 40 to 60 min in length, was audio recorded and transcribed. Inductive thematic analysis was used to analyse the data. Results Four main themes emerged: limited participation, bias, dignity, and quality of death. Health practitioners indicated that people with PIMD are frequently excluded from participating in decision-making related to end-of-life care. Participants discussed reasons for this exclusion including challenges with communication and cognition. Participants reported a need for additional support and guidance in providing care for people with PIMD at the end of life. Professional and family bias played a role in end-of-life decision-making for people with PIMD. Participants reported a disproportional focus by palliative care practitioners on physical as opposed to emotional and spiritual well-being for patients with PIMD at the end of life. Finally, participants reported that people with PIMD generally did not die in specialised palliative care settings, but in segregated supported living environments. Conclusions Due to negative perceptions of a person with PIMD’s decision-making capacity, people with PIMD are likely to be assessed as unable to express choice and preference regarding end-of-life care and are offered limited opportunity to be involved in their own end-of-life care. This research provides guidance for the development of training and professional development relating to people with PIMD at the end of life. It is hoped that this will increase the accessibility of end-of-life services for people with PIMD, ensuring that a respectful and dignified death can be a reality for all humankind regardless of disability.

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.

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