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Letting go: family willingness to forgo life support
V Swigart1, C Lidz, V Butterworth
1School of Nursing, University of Pittsburgh, PA 15261, USA.
Objective:
To describe the process of family decision making about life support in the critical care setting.
Design:
Descriptive, exploratory.
Setting:
A northeastern United States university-affiliated medical intensive care unit.
Sample:
Thirty family members of 16 critically ill patients.
Results:
Letting go or becoming willing to forgo life support involved three interrelated and complex processes: (1) family members sought out, obtained, and tried to understand information about the critical illness; (2) they reviewed the life story of the patient, seeking meaning in the patient's life and the critical illness; and (3) they struggled to maintain family roles and relationships. For most families, interpersonal and intrapsychic work during each process created a reframing of the issues related to the critical illness: (1) they came to believe that they had done all that could be done and were able then to relinquish the goal of recovery for acceptance of a peaceful death; (2) they reviewed the patients's life, finding some meaning and a sense that, given the situation, the patient would not want to continue on life support, and then they moved toward closure; and (3) they were able to bring about (at least within a small group of the closest family members) a sense of doing the "right thing", and they were able to develop some sense that forgoing life support for the ill relative would not destroy important family relationships. For a few other families this movement toward resolution did not occur, and although family members attempted to deal with the issues of life support, their efforts were fraught with conflict and prolongation of the end-of-life period.
Conclusions:
Little is known about the actual experience of family members as they are involved in life-support decision making. Identification of the needs of family members to work through the decision-making experience cognitively, emotionally, and morally is essential to communicating effectively about the ill relative's condition and to providing understanding and support to families involved in life-support decision making in the critical care unit.