The Fostering Improvement in End-of-Life Decision Science (FIELDS) Program:

The OurDirectives Study

Mentor: Scott Halpern, M.D., Ph.D., M. Bioethics; Beth Cooney, MPH

} Most Americans wish to die at home, among family and friends

} 1 in 5 Americans will die during or shortly following an ICU stay

} 63% of Americans die in a hospital, 17% die in an institutional setting

} Can be contributed to lack of comprehensive end-of-life care planning } Discussion with families and providers} Completion of an advance directive (AD)

Lost in Translation: Wishes to Care

Advance Directives} Two primary parts:

} The appointment of a health care agent } The completion of a living will

} Can not prevent every case of unwanted aggressive care, but can prevent prolonged ICU stays

} Reduction in healthcare costs as patients opt-out of care that doesn’t align with their wishes

} Despite the potential benefits, ADs remain underutilized (only 20-30% of Americans reported having one)

Aims} Collaboration across departments to build a web based

platform that utilizes what we know about question framing

} OurDirectives hopes to facilitate the completion of advance directives

} Self administered at convenience of patient} Improvement through extensive user testing

OurDirectives Home Page

Methods} Three stages:

} FitC pre-AD testing: identifying the primary user and their motivation

} Cancer Support Community: initial user testing } “States Worse than Death (SWD)” testing at PCAM

Findings – FitC} Friends in the City (FitC) indicated an interest in the

OurDirectives project and agreed to have members fill out surveys

} Primary participants were well educated, white women} Most completed an advanced directives because they

thought it was expected at their age

Findings – SWD Testing} Cancer Support Community gave us some initial feedback

that shaped the questions we tested at PCAM} 5 different questions were compared against each other

on 3 different forms} Evaluated how participants felt about the phrasing of the

questions

My Own Role} Carrying out user testing and getting feedback from

participants} Analyzing the data collected and presenting findings to

the OurDirectives team} Writing portion of the OurDirectives IRB protocol

Takeaway} An amazing experience to be part of a team that spans

across departments} Stakeholder insight is crucial in seeking to remedy

existing issues