Transitions to End-of-Life Care for Patients With Chronic Critical Illness: A Meta-Synthesis

Background: Adults with chronic critical illness (CCI) frequently experience a terminal trajectory but receive varying degrees of palliation and end-of-life care (EOLC) in intensive care units (ICUs). Why palliation (over curative treatment) is not augmented earlier for patients with CCI in ICU is not well understood. Purpose: To identify the social structures that contribute to timely, context-dependent decisions for transition from acute care to EOLC for patients with CCI and their families. Methods: We conducted a meta-synthesis of qualitative and/or mixed-method studies that recruited adults with CCI, their families or close friends, and/or health-care providers (HCPs) in an ICU environment. Results: Five studies reported data from 83 patients, 109 family members, and 57 HCPs across 5 institutions in Canada and the United States. Overall, we found that morally ambiguous social expectations of treatment tended to lock in HCPs to focus on prescriptive work of preserving life, despite pathways that could “open” access to augmenting palliation and EOLC. This process limited space for families’ reflexivity and reappraisal of CCI as a phase liminal to active dying. Notably, EOLC mechanisms were informal and less visible. Conclusion: The management of dying is one of the central tenets of ICU care. Our findings suggest that patients and families need help in negotiating meanings of this situation and in using mechanisms that allow reappraisal and permit understanding of CCI as a phase liminal to dying. Moreover, these mechanisms may paradoxically reduce the ambiguity of patients’ future, allowing them to live more fully in the present.