Living in Stillness: Learning from Art and Literature on Dignity and Despair in Advanced ALS

Outcomes 1. Through exploration of art and stories, participants will gain a patient-centered understanding of the spiritual, relationship and psychological dimensions of living with ALS.2. Through the exploration of art and stories participants will be able to report the value of medical humanities in patient-centered education. Key Message Amyotrophic lateral sclerosis (ALS) challenges almost every domain of personhood, thereby causing suffering and impacting patients’ sense of dignity. Yet some patients lean into the stillness of the disease and thrive despite the suffering. In this session, we will learn from these teachers, people who have lived with ALS, through the arts, about this experience of stillness and resilience. Introduction Amyotrophic lateral sclerosis (ALS) challenges almost every element of personhood,causing suffering and impacting patients’ sense of dignity. Yet many people who live with ALS seek joy, deepen relationships, and find meaning despite the relentless progression of their debilities. Our greatest teachers are our patients, yet rarely do they have a voice at medical conferences. In this session, people who have lived with ALS will teach participants about their experiences through art and stories. Objectives Art and stories by patients and their caregivers are a profound teaching modality for clinicians seeking to better understand the psychological, social, and existential domains of living with serious illness. Methods Engaging literature and arts, the voice of patients who have lived with ALS will teach participants about how they lived with loss and disability and how they found wonder, purpose, and joy amidst this suffering. Results Medical humanities and patient stories have long been sources of teaching and meaning-making, protecting against burnout and fostering resilience for clinicians in the field of hospice and palliative care. They offer lessons on the spiritual, psychological and relational domains of being that are often missed in traditional evidence-based, scientific presentations and articles. Conclusion Art and storiesby patients and their caregivers are windows into the patient experience of illness and spiritual, relational and psychological wellbeing in the face of suffering. Patient and caregiver created literature and art can serve as a valuable addition to clinical education. Keywords Existential / Humanities / Spirituality / Religion Resilience / Well being