Abstract Body: Background
Palliative care has made important strides in the management of end-of-life symptoms for patients with cancer, though we have little understanding of end-of-life symptoms in patients with stroke and severe acute brain injury. As acute stroke management advances and more patients survive the acute phase of SABI, we aim to improve our understanding of their symptoms at end-of-life.
Objectives
To describe symptoms in the last week of life of patients with SABI, as reported by family members, using a validated symptom inventory scale.
Methods
This study is part of an ongoing prospective observational study of hospitalized patients with SABI and their family members at two academic institutions. Eligible patients were adults (>=18) admitted with ischemic stroke, intracerebral hemorrhage, or coma after cardiac arrest as the primary reason for hospitalization and who met at least one severity criteria (e.g. ≥NIHSS 10 on day 2). Family members completed a post-death survey that included the validated 22-item integrated Palliative outcome scale (iPOS). A symptom was defined to be prevalent if reported as “severely” or “overwhelmingly”. Given the novel use of iPOS in stroke, we also explored factors associated with missingness of iPOS items.
Results
We enrolled 303 patients and 352 family members. Of these, 165 patients were known to have died, with 149 having at least one family member complete a post-death survey. Descriptive characteristics are shown in Table 1. Median days from admission to death were 10, from death to survey completion 56. Of the 149 families, 138 (93%) responded to the iPOS question about patient pain while only 64% responded about hallucinations. Among responders, ≥60% reported poor patient mobility and difficulty communicating, and >50% reported patient fatigue and difficulty remembering things (Figure 1). All 22 iPOS items were completed for only 79 (<50%) participants. Family members who are older or have lower health literacy are more likely to miss at least one item (Table 2).
Discussion
According to family members, over 20% of patients with SABI at end-of-life suffer from severe pain and shortness of breath, while over 50% have severe fatigue and poor mobility. While family response rate to some symptom items, e.g. patient pain, is high, less than half completed all 22 iPOS items. More work is needed to further understand symptoms and develop interventions to ensure high quality end-of-life care after SABI.