Comprehensive Outcome Assessment after Severe Acute Brain Injury: Advanced Symptoms and End-of-Life Care Needs

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PROJECT SUMMARY/ABSTRACT Every 3 minutes in the United States, a person dies after suffering a severe acute vascular brain injury (SABI): an ischemic stroke, intracerebral hemorrhage or cardiac arrest. SABI accounts for more than one in 10 deaths globally and is a leading cause of serious long-term disability. Though advances in acute management of SABI have improved the chance of good outcome for some, this condition continues to have a tremendous impact for many due to high mortality, long-term disability, high symptom burden, complex care transitions, and changing goals of care over time. Yet, as most studies focus on measures of functional outcome or mortality, evidence- based information about more global multidimensional symptoms over time, and especially in the last weeks of life, is lacking. In addition, family members of patients with SABI are at risk for long-term psychological distress and reduced quality of life due to the burdens of surrogate decision-making, caregiving, and complicated grief. In contrast to many other serious illnesses, such as cancer or dementia, where death often follows a progressive decline in function, palliative care provision and serious illness conversations after SABI are uniquely challenging due to the suddenness of onset and substantial prognostic uncertainty that includes the potential for recovery. Palliative care specialists are rarely involved in the care of these patients. Preliminary studies have identified substantial missed opportunities to identify and address symptoms such as pain or psychological distress, or to prepare families for the high likelihood of death. In addition, hospital survivors are rarely discharged home and face fragmented care across nursing facilities, rehabilitation centers and hospitals. Currently, there is a critical gap in our understanding of the symptom burden among SABI patients and their families, as well as our understanding of how palliative care is integrated into SABI management. To better understand how to re- imagine care delivery models, we will conduct a multi-center prospective, longitudinal, mixed-methods cohort study of 540 patients with SABI and their families to examine key modifiable healthcare system determinants that may be targets for future intervention. The aims of this proposal are: 1) To define the trajectory and determinants of multidimensional symptom burden and quality of dying among patients with SABI to facilitate intervention development; 2) To identify key healthcare system factors and patient-related determinants associated with psychological distress among family members of patients with SABI; and 3) To better understand patient and family caregiver needs, identify gaps in care, and explore their perspectives on potential nursing and palliative care interventions to address unmet needs across the SABI continuum with in-depth interviews. Results of this work will allow us to target deficiencies in our health system through the design of specific, tailorable nursing and palliative care interventions. The depth and breadth of our findings will lead to contextually appropriate interventions for this population that will reduce suffering and improve quality of life and the quality of end-of-life care for all individuals affected by severe acute brain injury.