Being a patient in the intensive care unit (ICU) can be a horrifying experience—not being able to communicate and being constantly poked, prodded, and awoken—all while experiencing severe uncontrolled symptoms and facing possible death. Patients who survive critical illness are often left with short- and long-term effects such as functional debility, anxiety, depression, posttraumatic stress disorder, and cognitive impairment. Many survivors describe memories of being treated like an object and not being provided a mechanism to communicate with others. Dehumanization is any behavior that destroys one’s sense of self and contributes to a person being treated or feeling less than human. While patient dehumanization is not a deliberate goal of critical care, it is often an unfortunate, unintended, and unrecognized consequence with multiple causes.
We will build a research team and advisory board capitalizing on the expertise of the Society of Critical Care Medicine Discovery Research Network, ICU survivors and family members from the ARDS Foundation and Sepsis Alliance, critical care outcomes researchers, and humanization experts to explore reasons for and solutions to dehumanization in the ICU. We will conduct a series of strategic web-based focus groups of key stakeholders. In addition, we will analyze established online forums of ICU survivors. Our purpose is to (1) identify experiences of and causes of dehumanization of ICU patients and family members, (2) explore and prioritize solutions to reduce dehumanization and increase compassionate patient-centered care, and (3) synthesize participants’ feedback into high-priority comparative effectiveness research questions.
*All proposed projects, including requested budgets and project periods, are approved subject to a programmatic and budget review by PCORI staff and the negotiation of a formal award contract.