Patient Perspectives on States Worse Than Death: A Qualitative Study with Implications for Patient-Centered Outcomes and Values Elicitation

This episode features Dr Catherine Auriemma (Pulmonary and Critical Care Medicine Hospital of the University of Pennsylvania).

Prior surveys and limited qualitative work have identified several health states that patients value as equal to or worse than death.
The broad range of health states consider equal to or worse than death and the shared attributes of those states are not known.
Potential for using states worse than death as a patient-centered outcome measure or values elicitation tool is unknown.

In this qualitative study of 29 community-dwelling, older adults with serious illnesses, a wide range of impairments were valued as equal to or worse than death, with the most common attributes of a states worse than death being burdening loved ones and being unable to maintain human connections. Patients believed definitions of states worse than death were deeply personal and subject to change, both with time and fluctuations in health status. The common attributes underlying a broad range of physical, cognitive, and social impairments viewed as states worse than death help reveal patients’ core values and preferences for care.

Patients identified important barriers to using avoidance of states worse than death to guide medical decisions, limiting its applicability as an outcome measure. Asking about states worse than death could serve as a novel and efficient values elicitation tool.