Project Grant R01NR020607

MAPPING THE COMPLEX PROCESSES AND OUTCOMES OF CARE PLANNING - PROJECT SUMMARY/ABSTRACT ADVANCE CARE PLANNING (ACP) SUPPORTS PATIENTS IN IDENTIFYING AND COMMUNICATING THEIR PREFERENCES FOR MEDICAL CARE AND IS A KEY COMPONENT OF PATIENT-CENTERED CARE. THE PATIENT SELF DETERMINATION ACT OF 1990 NARROWLY DEFINED ACP AS DOCUMENTATION OF PREFERENCES FOR END-OF-LIFE PROCEDURES (E.G., RESUSCITATION), RESULTING IN A FOCUS ON ADVANCE DIRECTIVE COMPLETION. SINCE THEN, ACP HAS EVOLVED TO INCLUDE A FOCUS ON PREPARING PATIENTS AND CAREGIVERS FOR COMMUNICATION AND DECISION-MAKING ACROSS THE ILLNESS TRAJECTORY, WHICH IS BETTER CONCEPTUALIZED AS "CARE PLANNING" (CP) BECAUSE THE PROCESS INCLUDES BOTH ADVANCE AND IN-THE-MOMENT DECISIONS OVER THE LIFE COURSE. WHILE HEALTH SYSTEMS HAVE INVESTED IN CP AS A REQUISITE COMPONENT OF PATIENT- CENTERED CARE AND IT IS REIMBURSED BY THE CENTERS FOR MEDICARE AND MEDICAID SERVICES, WIDE HETEROGENEITY OF CP IMPLEMENTATION AND MEASUREMENT REMAIN, AND THE PERSPECTIVES AND NEEDS OF CULTURALLY DIVERSE PATIENTS, CAREGIVERS, AND INTERDISCIPLINARY KEY INFORMANTS (E.G., NURSES, ATTORNEYS, CHAPLAINS, ETC.,) HAVE NOT BEEN CONSIDERED. UNPRECEDENTED BASIC SCIENCE (NIH STAGE MODEL, STAGE 0) IS REQUIRED TO MAP THE COMPLEXITY OF THE ENTIRE CP PROCESS. IMPLEMENTATION SCIENCE AND HUMAN FACTORS ENGINEERING OFFER A PATH TOWARDS CLARITY. THIS PROPOSAL ADVANCES THE FIELD OF CP AND IMPLEMENTATION SCIENCE BY LEVERAGING DIVERSE KEY INFORMANT PERSPECTIVES AND HUMAN FACTORS ENGINEERING METHODS TO MAP IMPLEMENTATION PROCESSES OF CP AND TO IDENTIFY MEANINGFUL CP OUTCOMES ACROSS CLINICAL AND COMMUNITY SETTINGS AND ILLNESS TRAJECTORIES. WE WILL APPLY THE WELL- VALIDATED CONSOLIDATED FRAMEWORK FOR IMPLEMENTATION RESEARCH (CFIR) MODEL TO ILLUMINATE CP'S COMPLEXITY. CFIR DOMAINS INCLUDE CP INNOVATION CHARACTERISTICS (E.G., DISCUSSIONS) THAT OPERATE IN AN INNER SETTING (E.G., INPATIENT, OUTPATIENT, NURSING HOME, HOSPICE) AND OUTER SETTING (E.G., POLICY, FAITH COMMUNITIES) CENTERED AROUND CULTURALLY AND ETHNICALLY DIVERSE INTERDISCIPLINARY KEY INFORMANTS (E.G., PATIENTS, CAREGIVERS, HEALTHCARE PROFESSIONALS, COMMUNITY LEADERS, LEGAL/POLICY EXPERTS) INVOLVING A RANGE OF IMPLEMENTATION COMPONENTS (E.G., INITIATING, FACILITATING, DOCUMENTING, STORING, ACCESSING, UPDATING CP WISHES). THIS COMPLEXITY IS AMPLIFIED BY PATIENTS' ILLNESS TRAJECTORIES, HEALTHCARE ACCESS, AND UNIQUE AND DIFFERING CULTURAL BACKGROUNDS. OUR STUDY AIMS ARE TO: 1) DEFINE PROCESSES OF CP FOR VARYING SETTINGS (COMMUNITY, OUTPATIENT, ACUTE CARE, LONG-TERM CARE, HOSPICE), ILLNESS TRAJECTORIES (HEALTHY/CHRONIC ILLNESS, SERIOUS ILLNESS, END-OF-LIFE), AND HEALTHCARE ACCESS (RURAL, PUBLIC, UNDER-RESOURCED) BY CREATING CP WORKFLOW ARCHETYPES; AND 2) IDENTIFY PATIENT/CAREGIVER CENTERED AND IMPLEMENTATION OUTCOMES FOR EACH COMPONENT OF THE CP WORKFLOW ARCHETYPES. USING CFIR AND HUMAN FACTORS ENGINEERING WE WILL MAP ESSENTIAL IMPLEMENTATION FACTORS OF CP THROUGH FOCUS GROUPS AND INTERVIEWS AND USE DELPHI METHODS TO IDENTIFY MEANINGFUL PATIENT/CAREGIVER CENTERED OUTCOMES AND IMPLEMENTATION OUTCOMES. OUR LONG-TERM GOAL IS TO SET THE DIRECTION FOR FUTURE CP POLICY, RESEARCH, AND IMPLEMENTATION AND TO DECREASE HEALTH DISPARITIES IN CP AND MEDICAL CARE DURING SERIOUS ILLNESS AND AT THE END OF LIFE.