"It hurts to know... and it helps": exploring how surrogates in the ICU cope with prognostic information.

Abstract

Surrogates of critically ill patients in the intensive care unit (ICU) want honest prognostic information, but they also want to hear good news. There has been little examination of how surrogates navigate these dual needs or how clinicians should respond. The aim of this study was explore how surrogates in the ICU experience and cope with prognostic information and describe their recommendations for clinicians. We conducted a qualitative interview study with 30 surrogates facing life-sustaining treatment decisions in five ICUs in Pittsburgh, Pennsylvania. In-depth, semi-structured interviews with surrogates in the ICU focused on general experiences, emotional needs, informational needs, and recommendations for clinicians. We inductively analyzed transcripts for key themes using constant comparative methods. Surrogates experience a tension between wanting to know what to expect and needing to remain hopeful. This tension underlies their experience receiving prognostic information and may lead to behaviors that allow continued hope in the face of bad news, including: 1) focusing on small details rather than the big picture, 2) relying on gut instincts or personal beliefs about the patient, 3) seeking more positive prognostic information from other sources, and, for a minority, 4) avoiding or disbelieving prognostic information. Surrogates emphasize the importance of frequent communication and call on physicians to gently help them prepare for the worst and hope for the best. Surrogates in the ICU experience conflicting emotional and informational needs. They describe behaviors that give the appearance of avoiding bad news while simultaneously asking physicians to help them cope with prognostic information.