Expanding the Reach of Palliative Care: Engaging Caregivers through Policies and Practice
I aim to promote patient-family-community centered care by combining novel methods from computer science with palliative care. Currently, there is no standard way to support caregivers at discharge and across care settings. The recently passed Caregiver, Advise, Record, and Enable (CARE) Act requires that hospitals inform caregivers about and prepare them for discharge, yet no data exists about its implementation nor impact on outcomes, including palliative care utilization. Using natural language processing, we will evaluate the CARE Act implementation and study patient and caregiver experiences across large populations. We have developed AI methods to identify family documentation in the electronic health record (EHR) and will implement these methods within a large regional healthcare system to understand the relationship between the presence of family documentation, palliative care uptake, and health outcomes such as rehospitalizations. We will also conduct interviews with stakeholders to identify ways to improve CARE Act policy implementation and extend palliative care into communities to better support individuals with serious illness and their caregivers after discharge.
“My goal as a clinician-scientist is to become an independent investigator and palliative care leader to address the clinical and real-world needs that arise as patients and families contend with serious illnesses. I aspire to produce high-quality research that drives policy and health system changes to address the individual, social, and health system factors that influence caregiver wellbeing and quality of life across the care trajectory. My vision for palliative care is that every person with a serious illness and their family have access to high quality palliative care in a way that is most appropriate for them, and in whatever setting is right for them, whether that setting is the hospital, home, or community. My study acknowledges the important role that family caregivers play in providing quality care for patients with serious illnesses. In all care settings, and especially during care transitions like hospital discharge, it is essential that patients and families have access to education, health care services such as palliative care, and community resources. I am inspired to pursue this award to transform palliative care into a household term and extend its reach into communities, to improve the outcomes and experiences of patients and families contending with serious illnesses, and lead a future generation of diverse palliative care providers.”
