연명의료가 예견되는 시점에서 환자 가족의 역할: 말기암 환자 가족의 돌봄 경험에 대한 내러티브 분석*

Abstract

There are considerations both for and against allowing family members to decide whether to withdraw life-sustaining treatment from a terminal patient who is no longer able to communicate. On the one hand, a patient’s family members will often be the most suitable persons to speak for a patient’s values and interests and to make the best decision for the patient. On the other hand, family members may be influenced in their decision-making by a desire to rid themselves of the financial burden of the patient’s medical costs. Until now there has been a lack of in-depth research into the decision-making of family members caring for a terminally ill patient on life-sustaining treatment. This study investigates the suffering experienced by family members throughout the period of care, the changes in their relationships to the patient and/or other family members, and their attitudes toward the withdrawal of life-sustaining treatment by conducting in-depth interviews with six family members who have given primary care to a patient in the final stages of cancer. The study participants report their emotional suffering as a result of the patient’s condition, the substantial changes in their lives after the patient has been diagnosed with cancer, and the conflicts with the patient or other family members that have arisen in the process of caring for the patient. By analyzing the statements of these participants, this study suggests that in the discussions of life-sustaining treatment family members should be considered as multi-faceted individuals who sacrifice themselves in order to care for the patient while trying to maintain family bonds as well as fulfilling their own emotional, physical, economic, and relational needs.