Looking Back: Primary Decision Makers\u27 Narratives about the Decision to Withdraw Life-Sustaining Treatment from a Family Member.

Background. Advances in biomedical and critical care technology make it possible to prolong life in patients with severe illness or injury; however, these innovations render choices regarding Life-Sustaining Treatments (LST) more complex for the decision maker. This study addressed a gap in the literature regarding how primary decision makers reflected on the time they were responsible for making a critical decision to withdraw LST for their family member who experienced an unexpected illness or trauma. Purpose. The purpose of this study was to examine the primary decision makers’ narratives about the decision to withdraw Life Sustaining Treatment (LST) of a family member, at least six months or more after having made the decision. Method. An unconstrained deductive content analysis using a sensitizing frame of the Ottawa Decision Support Framework guided the data collection and analysis of interview data based on the pre-determined categories of decisional need, decision support, decision quality, and aftermath. A non-randomized sample of 9 primary decision makers responded to questions in a structured interview lasting 20 to 50 minutes. Questions focused on the participants’ thoughts and feelings during the time decisions were made for their family member. Findings. All participants were Caucasian females with an average age of 60. The relationship to the family member was either a spouse or adult child. At the time of the interview, the interval since the time of death of the family member varied from 9 months to 25 years. Thirteen themes within the pre-determined categories of the Ottawa Decision Support Framework emerged. Six themes emerged in decisional need, four in decision support, and three in decision quality categories. One of the overarching themes from this data analysis was the value of support from family and friends when participants made the decision to discontinue LST. Two themes not addressed within the framework were the importance of faith to the decision makers and that the decision was the hardest one they ever made. Themes regarding aftermath of the decision reflected the participants’ feelings about wishing they had shared information with the dying family member and knowing they made the right decision. Conclusions. When the primary decision makers face LST decisions, they have multiple needs and value support from their family and friends. In order to improve support to primary decision makers, health care providers should use components of the Ottawa Decision Support Framework, such as coaching, decision tools, or counseling. By becoming partners with the primary decision makers faced with LST decision, health care professionals can improve the quality of those decisions