Family Experiences of End-of-Life Decision-Making and Withdrawal of Life-Sustaining Treatments in Adult ICUs: Findings from Phase 1 of the ELPIS Study

Background: Family members of critically ill patients often face profound emotional and ethical challenges when involved in end-of-life decision-making and withdrawal of life-sustaining treatments in intensive care units (ICUs). Despite extensive literature on shared decision-making and end-of-life care in ICUs, there remains limited theory explaining how families experience and navigate this process.

Aim/Research question or hypothesis: To explore how family members experience decision-making and care during the withdrawal of life-sustaining treatments in adult ICUs, as part of a two-phase grounded theory study. Findings from Phase 1 will inform the theoretical sampling and theory development in Phase 2.

Methods: Phase 1 adopted a constructivist grounded theory approach. Bereaved family members of adult ICU patients were recruited through three NHS trusts in England. Semi-structured interviews were conducted, transcribed, and analysed using initial and focused coding with constant comparison. Data collection and analysis were iterative, allowing for ongoing refinement of emerging concepts.

Results: Nineteen interviews were completed, generating over 1500 initial codes. Analysis identified key concepts shaping families’ experiences: (1) Emotional and cognitive overwhelm during rapid clinical deterioration; (2) Navigating uncertainty and fragmented communication; (3) Reconciling personal, cultural, and moral values with clinical realities; and (4) Seeking meaning and closure after the patient’s death. Family members described decision-making as both a duty and a burden, influenced by trust in clinicians and the perceived legitimacy of involvement. Care during the withdrawal of life-sustaining treatments was generally perceived as both patient and family-centred.

Discussion: Phase 1 has highlighted the complex relational and emotional dimensions of family decision-making in ICUs. It also revealed how the process of withdrawal of life-sustaining treatment (WLST) was an emotionally challenging experience, however, it was ameliorated by trust, communication and compassion from healthcare professionals. These insights will directly inform Phase 2 of the study, where we will test and refine the evolving theory through further interviews and advanced coding.