Mapping the Complex Processes and Outcomes of Care Planning

About This Grant

Advance care planning (ACP) supports patients in identifying and communicating their preferences for medical care and is a key component of individualized 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 individualized 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 patients, caregivers, and interdisciplinary experts (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 interdisciplinary expert, patient, and caregiver perspectives and human factors engineering methods to map implementation processes of CP and to identify clinically relevant 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) centered around subject matter experts (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 and setting. 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 by creating CP Workflow Archetypes; and 2) Identify clinically relevant 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 important implementation outcomes. Our long-term goal is to set the direction for future CP policy, research, and implementation.