???To get decisions that reflect the patient's values, we need to support families in the role of surrogate decision making, both by ensuring timely conversations with clinicians and by helping surrogates prepare in advance for those conversations.??? - Douglas B. White, MD, MAS, School of Medicine, University of Pittsburgh


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 posttraumatic 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 will be created to complement the usual clinician-family communication and improve the quality of shared decision making in the ICU. It will be easily accessed via Smartphone, home computer, laptop, or tablet.


Improvements in Action

A low-fidelity prototype of the CSDM tool has been developed with input from surrogate decision makers and clinicians. The design is undergoing further refinement with feedback from a stakeholder panel of surrogates and their family members, physicians, nurses, social workers, and chaplains.

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


Results – Next Steps

A programmer will be hired to develop a high-fidelity web application based on additional feedback from the stakeholder panel. Other planned steps include developing procedures for integrating the tool into the workflow and a training manual for clinicians.

The tool will be further tested through a pilot study involving 20 intensive care unit (ICU) patients and their surrogates over a three-month period. The final CSDM tools is expected to improve the quality of shared decision making in the ICU, leading to care decisions that better match 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.