Swigart V, Lidz C, Butterworth V, Arnold R
School of Nursing, University of Pittsburgh, PA 15261, USA.
Heart Lung. 1996 Nov-Dec;25(6):483-94. doi: 10.1016/s0147-9563(96)80051-3.
To describe the process of family decision making about life support in the critical care setting.
Descriptive, exploratory.
A northeastern United States university-affiliated medical intensive care unit.
Thirty family members of 16 critically ill patients.
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.
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.
描述重症监护环境下家庭关于生命维持治疗决策的过程。
描述性、探索性研究。
美国东北部一所大学附属医院的重症监护病房。
16名重症患者的30名家庭成员。
放手或愿意放弃生命维持治疗涉及三个相互关联且复杂的过程：（1）家庭成员寻找、获取并试图理解有关重症疾病的信息；（2）他们回顾患者的人生经历，探寻患者生命及重症疾病的意义；（3）他们努力维持家庭角色和关系。对大多数家庭而言，每个过程中的人际及内心工作促使他们对与重症疾病相关的问题进行重新审视：（1）他们开始相信自己已竭尽全力，从而能够放弃康复目标，接受安详离世；（2）他们回顾患者的人生，找到一些意义，并感觉到鉴于病情，患者不会希望继续接受生命维持治疗，然后他们走向结局的终结；（3）他们能够（至少在一小群最亲密的家庭成员中）产生一种做“正确之事”的感觉，并且能够形成一种认知，即放弃为患病亲属提供生命维持治疗不会破坏重要的家庭关系。对于其他一些家庭，这种走向解决的过程并未发生，尽管家庭成员试图处理生命维持治疗的问题，但他们的努力充满冲突，延长了生命末期。
对于家庭成员参与生命维持治疗决策的实际经历了解甚少。识别家庭成员在认知、情感和道德层面经历决策过程的需求，对于就患病亲属的病情进行有效沟通以及为参与重症监护病房生命维持治疗决策的家庭提供理解与支持至关重要。
