PS 1-19
PERSPECTIVES OF SURROGATE DECISION MAKERS ON PROGNOSIS AFTER BRAIN HEMORRHAGE
Method: Surrogates of patients with spontaneous intracerebral hemorrhage were identified from 5 institutions (3 academic, 2 community), with semi-structured interviews conducted during or shortly after hospitalization. Interviews were audio-recorded, transcribed, and qualitatively coded for salient themes.
Result: Fifty-two surrogates were included (mean age 54, women 60%, non-Hispanic white 58%, African American 13% Hispanic 21%). At the time of the interview, patient status was hospitalized (17%), rehabilitation/nursing facility (37%), deceased (38%), hospice (4%), or home (6%). Surrogates reported receiving different prognoses from different members of the health care team (19%), which lead to distress or frustration in most cases and a change in the plan for brain surgery in 3 cases (6%). Numeric estimates of prognosis were given in 21% of cases, with 65% reporting that no numeric prognostic estimate was provided, including 17% who reported that prognosis was not discussed at all. In most cases, it was unclear if surrogates wanted numeric estimates (56%), though 23% reported wanting a numeric estimate or a different estimate than what was provided, while 17% did not want numbers or felt that numbers were not possible. Surrogates reported that physicians expressed uncertainty in their prognostic estimate in 37% of cases, with 56% reporting physician certainty in prognosis. Both positive and negative reactions were reported when physicians conveyed certainty about poor prognoses. Reactions to uncertainty were also mixed, with the uncertainty leading to anxiety or frustration, but also recognition that uncertainty was unavoidable. Surrogates were often surprised or confused by the variable use of the term “stroke” (17%), as medical teams varied in use of terms such as “stroke”, “brain hemorrhage”, or “brain bleed”, with “stroke” having a more serious or negative connotation.
Conclusion: Current practice of prognostic communication after severe stroke has many gaps, including providing inconsistent estimates, not meeting surrogates’ desire for numerical information, and using confusing terminology. These practices can lead to to increased stress on surrogates and variability in life and death treatment decisions. Further work is needed to improve prognostic communication to limit surrogate distress and improve the quality of subsequent treatment decisions.