End-of-Life Decision Making and Emotional Burden: Placing Family Meetings in Context

Abstract

Background: Helping families make end-of-life care decisions can be challenging for health care providers in an intensive care unit (ICU). Family meetings facilitated by palliative care consult services (PCCS) have been recommended and found effective for improving support for families in these difficult situations. These services can be improved with a deeper understanding of factors associated with emotional burden in the aftermath of end-of-life decision making. Objective: This qualitative study seeks to provide a better understanding of family experiences and emotional burden surrounding end-of-life decision making. Participants and Methods: We conducted in-depth, semistructured interviews with 23 family members following the death of a loved one in the ICU. All participants had been involved in a PCCS-led family meeting concerning end-of-life decisions about their loved one. Methodology from grounded theory was used to analyze the content of transcripts and to build a theoretical model. Results: From the perspective of the family, decision making at the end of life is described within a theoretical model of salient experiences that are relevant to families’ emotional burdens. Three temporal stages were evident: (1) the illness experience, (2) decision making in the family meeting, and (3) the dying process. However, emotional burden in the form of lingering questions and resentment was more common when families reported having negative experiences during the final hospital stay. Conclusions: Supportive responsiveness from the PCCS for families who have experienced critical incidents or who have unanswered questions or resentment about treatment may be an important consideration to alleviate later emotional burden.