Comparison of a Novel Web-based Advance Directive Platform to a Standard Advance Directive: Randomized Evaluation
Advanced directives (ADs) are the most common tool to increase the chances that seriously ill patients receive care that promotes their underlying goals. However, as currently designed, ADs may not achieve this purpose. ADs are rarely completed, often inaccessible at the point of care, and, most importantly, typically lack sufficient information to convey preferences to surrogate decision-makers and clinicians. Penn Medicine has developed the OurCareWishes.org research platform to test how to design a web-based AD that effectively captures and communicates patient preferences for end-of-life care. OCW contains a series of preference modules developed through iterative pilot testing. This study will randomize 90 patients with GI and thoracic malignancies to one of two conditions: 1) OCW modules, 2) web-embedded standard AD form. Patients will complete a series of questions pre- and post-module completion. Designated health care proxies will also be asked to review patient preferences and complete a post-review questionnaire. The primary endpoint will be surrogate confidence in making end-of-life decisions for the patient, using a validated instrument. Secondary endpoints will include patient acceptability, changes in patient satisfaction with end-of-life plans, rates of spontaneous sharing of preferences, qualitative patient responses, and intensity of treatment preferences. This project will catalyze extramurally funded trials of different ways to deploy the OCW platform to improve end-of-life care.