Developing a Communication and Shared Decision-Making Tool to Prepare Family Members in ICUs for the Role of Surrogate Decision Maker

Grant Application

Douglas B. White, MD, MAS, School of Medicine, University of Pittsburgh, in partnership with Robert Arnold, MD, Anne Marie Shields, RN, MSN, Lisa Weissfeld, PhD, and Pearl Buddadhumaruk, MS, University of Pittsburgh, Brad Myers, PhD, ofCarnegie Mellon University, and Holly Witteman, PhD, University of Laval

Proposed Innovation

Family members acting on behalf of incapacitated critically ill patients often struggle with difficult end-of-life decisions. Many experience guilt and doubt about their decisions, leading to depression, anxiety, and even post-traumatic stress disorder (PTSD). In addition, patients often receive more invasive treatment or experience more pain because families and physicians are unaware of their preferences. Intensive care at the end of life also can lead to high medical costs.

Through this project, a web-based communication and shared decision-making support (CSDM) tool has been created to complement the usual clinician-family communication and improve the quality of shared decision making in the ICU. It is easily accessed via home computer, laptop, or tablet.

Improvements

A programming company was hired to develop a high-fidelity web application of the CSDM tool. Tool development was based on feedback during user testing, and additional input from a stakeholder panel of surrogate decision makers and clinicians. Afterward, the design underwent further refinement with feedback from surrogate decision makers of current ICU patients.

The tool was designed to ensure that family members receive decision support while also providing clinicians with real-time feedback about the surrogates’ needs and concerns.

The tool will be used to:

• educate family members about their role as surrogate decision makers
• conduct a values exercise to help determine what the patient would want
• help surrogates formulate their questions and concerns in advance of family meetings
• provide feedback to clinicians before conferences
• educate surrogates about treatment options and their risks and benefits
• provide a clearinghouse of psychological support resources

Outcomes

 

The tool is being further tested through a pilot study involving 50 intensive care unit (ICU) patients and their surrogates over a three-month period. The final CSDM tool is expected to improve the quality of shared decision making in the ICU, leading to care decisions that better match the patient wishes. By creating a care process that is more coordinated and less chaotic, family members should have a less traumatic experience in the ICU with fewer long-term symptoms of PTSD. Providing more comfort-focused care for patients with a poor prognosis also should reduce health care costs.