Family members' experiences of decision-making processes in the context of withholding or withdrawing treatment in the ICU. A qualitative interview study

Abstract

This thesis is based on the decision-making process involved in treatment termination in intensive care. ICU patients often have impaired consciousness and may therefore lack capacity to consent. In such cases, the health care personnel have the decision-making authority, but where a serious intervention for the patient is involved, information should if possible be obtained from the patient’s next-of-kin about what the patient would have wanted. The reason for conducting this study was that we in Norwegian intensive care practice knew little of the experiences of family members from situations where life-critical decisions are made on behalf of patients and which ethical and value issues the families experience as crucial. This thesis therefore examines the experiences of bereaved family members from the decision-making process when treatment of ICU patients is terminated. The study examined what participation in the decision-making process might involve, what it might signify to have responsibility in such situations and whether the family knew the patient’s preferences for such a situation. Questions were also directed at the family’s communication with doctors and nurses. Four ICUs at Norwegian university hospitals selected potential participants. 21 qualitative interviews with 27 relatives of deceased ICU patients were analysed using two different qualitative approaches. The most important finding was that most families in the study had wanted to be more included in the decision-making process, in order to contribute what they knew about the patient’s preferences and values. Only a few of the families were included in a process over time. These were very satisfied with the way they were treated, the care they were shown, communication with clinicians and the termination process itself. The other families also experienced being shown much care, but communication with physicians was random, too seldom and could be disrespectful. The families pointed out that nurses generally did not attend family-physician meetings and nurses expressed themselves vaguely regarding treatment prospects and prognosis. When the end of treatment was approaching, these families were either just informed that it was to be terminated or were informed and asked to consent to the decision. The consequences for the families were uncertainty about the basis for the decision, a sense of loneliness around unanswered questions, lack of clarity about their own role and a feeling of responsibility for the patient. The study concludes that, even though communication about treatment termination is demanding and context-dependent, the family’s perspective could still be given more consideration. We identify several specific factors which we believe to be important for the improvement of the circumstances around treatment termination. Because these situations are complex and compound, doctors and nurses could first of all become more aware of and relate to the ethical aspects of the situation. Secondly, we believe there is a need for more training in communication with families in ethically difficult situations. Doctors and nurses can and should work more systematically and methodically as a team in their approach to patients’ families.