Rachel Rusch

Discipline: Social Worker

Funding awarded to: Children's Hospital Los Angeles

The Perseverance Project: Transforming Resilience Through the Power of Story

A patient’s ability to have their personhood acknowledged and celebrated through a community who listens with compassion may directly correlate to their ability to persevere throughout their disease trajectory. How might we lift up the stories of our patients, and how might we nurture our ability to listen? How might this exchange create perseverant healthcare systems that are truly person-centered alongside a thriving and sustainable workforce? The Perseverance Project is comprised of two main interventions. The first will adapt a well-founded intervention titled “My Life, My Story” into pediatrics, placing a patient’s individually crafted story at the center of their medical record, transforming person-centered care. The second intervention will build upon Compassionate Listening workshops successfully piloted in a variety of settings, deepening a clinician’s ability to listen and bear witness while creating a renewed sense of inspiration and purpose in an increasingly stressful healthcare system. Together, these interventions promote patient and clinician perseverance concurrently, impacting considerations of whole-person care, provider well-being and resiliency.

Palliative care is storytelling and storytelling is palliative care. My career goal is to lead palliative care into the mainstream of cultural conversation through transformative interventions that promote perseverance. Now is the moment for the culture of health care to shift, adapt and grow into new models, led by the tenets of palliative care and social work. We are in the middle of an extraordinary time in our collective history, defined by a global pandemic and a deepened call for radical change toward social justice and equality. Never before has the importance of story and of compassionate listening been more central to our collective care. We are faced with profound, multi-layered grief driven by inefficiencies and inequalities in our healthcare system. These are domains that call for palliative care social work leadership as we form new ways to scaffold patient, family and provider perseverance in the face of extensive unknowns.