Improving End-of-Life Care in Nursing Facilities: The Community State Partnership to Improve End-of-Life Care—California

Abstract

The California Coalition for Compassionate Care formed in 1998 when activists and organizational leaders in several arenas sought to link their efforts for synergistic impact on end-of-life care and to obtain funding to sustain their forward momentum and collaboration. The Coalition focused on public engagement, professional education, and reforms in skilled nursing facilities. With skilled nursing facilities, the Coalition's work built on the efforts of the ECHO (Extreme Care, Human Options) Long Term Care Task Force, which served as a precursor to the Coalition. The Coalition's objective was to assist committed facilities in devising processes of care that would operationalize basic end-of-life care principles in a manner specific to their particular facility. The Coalition recruited three-member leadership teams from nursing facilities throughout California to attend a 2-day training program, write an action plan, and receive 6 months of modest follow-up support. To assess its success, the group used posttraining evaluations, a follow-up evaluation, a focus group, and informal feedback over several years to assess the dynamics, achievements, and challenges of their efforts. In 2000-2002 the training reached 298 people representing 109 nursing facilities and each district office of the nursing facility surveyors. Response to the training was enthusiastic. Self-reported improvements in 27 care practices were best in the areas of pain assessment and management. Completion of nursing facilities' self-identified action plans varied widely. Participants generally perceived the commitment to improving end-of-life care as a vehicle for improving the overall care and quality management in nursing facilities. The specific challenges of organizational change in nursing facilities require sustained, focused leadership and hands-on guidance to overcome the inevitable barriers and setbacks. The Coalition's experience confirms that coalitions depend upon personal commitments and relationships, a focus on practical products, and a consistent infrastructure.