Evidence-based practice parameters in amyotrophic lateral sclerosis (ALS) provide clear management direction on caring for patients during disease progression. However, management direction is also needed specifically for end-of-life care for patients with ALS. Little evidence is available in the published literature identifying optimal management approaches for the dying patient with ALS. Therapeutic direction has been adapted from pain management and other disease states, such as cancer.
Promoting Excellence in End-of-Life Care was a national program of the Robert Wood Johnson Foundation charged with the task of improving the end of life for dying patients. The Promoting Excellence program office recognized ALS as a disease that requires special attention at the end of life. Working with The ALS Association (ALSA), an ALS Peer Workgroup was established with the charge of identifying the current state of end-of-life care for ALS patients and establishing recommendations on how to improve the end of life for patients and their families.
The ALS Peer Workgroup identified topics and issues specific to the end of
life in ALS: 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. For each
topic, the Workgroup identified the current state of knowledge, determined
what constitutes ideal care and provided recommendations on how to close the
gap between current and ideal care. A systematic review of the literature was
conducted in order to identify the available evidence for these issues. This
evidence review was used as the foundation to define the current state of care,
and consensus was used to determine the gaps between current care and optimal
care. Recommendations to the field were developed, addressing practice, research,
program development and health care policy. These recommendations are based
on published evidence and consensus.
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Promoting Excellence in End-of-Life Care was a national program of the Robert Wood Johnson Foundation dedicated to long-term changes in health care institutions to substantially improve care for dying people and their families. Visit PromotingExcellence.org for more resources.