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

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.

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

Nursing Ethics ◽

10.1177/0969733017703697 ◽

2017 ◽

Vol 26 (1) ◽

pp. 270-279 ◽

Cited By ~ 1

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.

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Family Members’ Informal Roles in End-of-Life Decision Making in Adult Intensive Care Units

American Journal of Critical Care ◽

10.4037/ajcc2012520 ◽

2012 ◽

Vol 21 (1) ◽

pp. 43-51 ◽

Cited By ~ 42

Author(s):

Jill R. Quinn ◽

Madeline Schmitt ◽

Judith Gedney Baggs ◽

Sally A. Norton ◽

Mary T. Dombeck ◽

...

Keyword(s):

Health Care ◽

Decision Making ◽

Intensive Care ◽

End Of Life ◽

Intensive Care Units ◽

Family Members ◽

The Family ◽

Decision Making Processes ◽

End Of Life Decision ◽

Life Decision

Background To support the process of effective family decision making, it is important to recognize and understand informal roles that various family members may play in the end-of-life decision-making process. Objective To describe some informal roles consistently enacted by family members involved in the process of end-of-life decision making in intensive care units. Methods Ethnographic study. Data were collected via participant observation with field notes and semistructured interviews on 4 intensive care units in an academic health center in the mid-Atlantic United States from 2001 to 2004. The units studied were a medical, a surgical, a burn and trauma, and a cardiovascular intensive care unit. Participants Health care clinicians, patients, and family members. Results Informal roles for family members consistently observed were primary caregiver, primary decision maker, family spokesperson, out-of-towner, patient’s wishes expert, protector, vulnerable member, and health care expert. The identified informal roles were part of families’ decision-making processes, and each role was part of a potentially complicated family dynamic for end-of-life decision making within the family system and between the family and health care domains. Conclusions These informal roles reflect the diverse responses to demands for family decision making in what is usually a novel and stressful situation. Identification and description of these informal roles of family members can help clinicians recognize and understand the functions of these roles in families’ decision making at the end of life and guide development of strategies to support and facilitate increased effectiveness of family discussions and decision-making processes.

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