Although most seriously ill patients and their families wish to avoid aggressive, burdensome care, such care is commonplace near the end of life. Aggressive end-of-life care is associated with reduced quality and quantity of life. Advance directives (ADs) are one of the most commonly used tools to help patients avoid undesired high-intensity care. However, as currently designed, ADs encounter multiple barriers to effective use: uptake is low, completed directives are often inaccessible, and content does not always convey the information needed to inform clinical decisions. Little research has focused on how technology can improve this process. This study seeks to optimize the content of OurCareWishes.org, a Penn-developed web platform for advance directive completion, by conducting a series of studies with multiple stakeholders designed to make ADs easier to complete and more clinically useful. We will examine patients’ perspectives on AD content and measure the concordance between patients’ preferences and those of patients’ caregivers and physicians, who are tasked with using ADs to make decisions at the point of care. By optimizing the content of OurCareWishes.org, this project will catalyze extramurally funded trials of different ways to deploy the platform to improve end-of-life care in America.
University of Pennsylvania Health System, Palliative and Advanced Illness Research Center Learning Lab Funds