The Importance of Ascertaining Participant Preferences: The Importance of What Is Important

Abstract

ABSTRACT Rosalie Kane made major contributions to research on ascertaining personal preferences. Her work influenced others and was part of a growing movement to place high priority on the voice and subjective experience of people who live with Long-Term Services and Supports (LTSS). This essay summarizes some highlights of Rosalie’s research, and traces the idea of incorporating participant preferences through different programs, policies and measurement tools over the past three decades. The current policy environment takes as paramount the notion that participants in LTSS programs should have an active role in planning their own care. While language supporting preferences is not new, the technology to effectively and efficiently elicit preferences is relatively recent. Key milestones in the development of these policies are reviewed. Rosalie’s influence on generations of researchers and policy makers cannot be understated. She challenged colleagues, state program agencies and program directors to consider “the art of the possible,” pushing them to explore how LTSS could fully support the dignity, independence and autonomy of every participant. A remaining challenge for researchers, policy makers and program managers is to move beyond incorporating preferences and choices as outcomes, and develop methods to accountably and reliably measure and incorporate individual goals of care into LTSS care plans. As LTSS continues to shift more and more into home and community-based settings, the quality of care and the quality of life for people who rely on those services will demand more subtle and individualized measures of processes and outcomes.