Abstract

Objectives • Identify adaptive challenges faced by family members of seriously ill patients in the ICU. • Identify adaptive work carried out by family members as they navigate discussions of limiting life support. • Identify ways that Healthcare Professionals can support adaptive work. Original Research Background: Family members of seriously ill patients in the ICU encounter many challenges as they face the possibility that their loved ones might die. Understanding how family members respond to these challenges is crucial to developing ways to support them. The Adaptive Leadership framework describes how people adapt to challenges and learn behaviors that facilitate adaptation. Research Objectives: To understand whether this framework could be applied to families facing the uncertainty of critical illness. Methods: This prospective, qualitative, descriptive study conducted narrative-style interviews with families of patients identified by a physician as being at high risk of dying. Using qualitative content analysis, we analyzed the interviews of 20 family members who participated in discussions about limiting life support. We used the Adaptive Leadership framework to develop provisional codes looking for evidence of adaptive challenges and adaptive work on the part of the family members and adaptive leadership behaviors on the part of the healthcare providers (HCP). Results: The family members faced multiple adaptive challenges, including rapid fluctuation in the condition of the patient, perceptions of a very rapid shift from curative to palliative focus, and failure of the patient to respond to treatment. Adaptive work included seeking and processing information, maintaining hope, moving toward acceptance, making decisions, and achieving closure. Adaptive leadership behaviors included assuring comfort and nonabandonment, clarifying uncertainty, collaborating, discussing options, making recommendations, reframing hope, and strengthening the therapeutic relationship by communicating with compassion and honesty. Conclusions: These findings suggest that family members are better able to adapt to challenges when they experience HCP behaviors that support their adaptive work. Implications for Research, Policy, or Practice: Interventions developed within this framework would tailor HCP behaviors to the adaptive challenges that family members face and the adaptive work that they have done, so that HCPs can best support family members as they navigate the challenges of being asked to make difficult EOL decisions.

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