Surrogate Decision Makers' Perspectives on Family Members' Prognosis after Intracerebral Hemorrhage

Surrogate communication with providers about prognosis in the setting of acute critical illness can impact both patient treatment decisions and surrogate outcomes.

To examine surrogate decision maker perspectives on provider prognostic communication after intracerebral hemorrhage (ICH).

Semistructured interviews were conducted and analyzed qualitatively for key themes.

Surrogate decision makers for individuals admitted with ICH were enrolled from five acute care hospitals.

Fifty-two surrogates participated (mean age = 54, 60% women, 58% non-Hispanic white, 13% African American, 21% Hispanic). Patient status at interview was hospitalized (17%), in rehabilitation/nursing facility (37%), deceased (38%), hospice (4%), or home (6%). Nineteen percent of surrogates reported receiving discordant prognoses, leading to distress or frustration in eight cases (15%) and a change in decision for potentially life-saving brain surgery in three cases (6%). Surrogates were surprised or confused by providers' use of varied terminology for the diagnosis (17%) (e.g., "stroke" vs. "brain hemorrhage" or "brain bleed") and some interpreted "stroke" as having a more negative connotation. Surrogates reported that physicians expressed uncertainty in prognosis in 37%; with physician certainty in 56%. Surrogate reactions to uncertainty were mixed, with some surrogates expressing a negative emotional response (e.g., anxiety) and others reporting understanding or acceptance of uncertainty.

Current practice of prognostic communication in acute critical illness has many gaps, leading to distress for surrogates and variability in critical treatment decisions. Further work is needed to limit surrogate distress and improve the quality of treatment decisions.