Field of Work: End-of-Life Care
Problem Synopsis: Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig's disease, is a progressive neurodegenerative disease that affects about 4,600 Americans each year. There is no cure for ALS, which typically leads to death three to five years after symptoms begin. As the disease progresses, most people suffering from ALS and their families must make decisions about whether and when to forgo active treatment or life-sustaining care. Most ultimately decline aggressive treatment, making palliative care essential.
Synopsis of the Work: The Amyotrophic Lateral Sclerosis (ALS) Workgroup of RWJF's Promoting Excellence in End-of-Life Care national program sought to catalyze rapid change, resulting in improvement in the care of patients dying of ALS and their families. Workgroup members addressed issues related to the end of life in ALS within 12 domains: general psychosocial care; bereavement; spirituality; quality of life; caregiver issues; communication skills; ethics; decision-making; symptom management; access to care; costs of care; and knowledge/education. In each domain, members identified the current state of knowledge, determined markers of ideal care, recommended ways to close the gap between current and ideal care and identified tools for clinicians and other staff.
The ALS Workgroup recommended: