Mapping the Complex Processes and Outcomes of Care Planning
openNINR - National Institute of Nursing Research
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.
Up to $836K
health research