“Expanding Access to Hospice Care for People with ALS”

Amyotrophic lateral sclerosis (ALS) is an incurable, fatal motor neuron disease that progressively destroys muscle function.

This report focuses on informing hospices and other health professionals about advances in prognostication and clinical management of hospice patients with non-cancer diagnoses.

It is intended to encourage timely and appropriate hospice care for patients with ALS, within Medicare’s eligibility requirements. It presents prognostic criteria for ALS eligibility along with stories of hospices that have successfully met the challenges of providing care to patients with ALS by working collaboratively with ALS groups and professionals in their communities.

Report Table of Contents

• A Lot of Grieving
• Memorable Patients
• The Ethical Imperative
• An Expanded Role for Hospice
• Different Communication Styles
• Hospice Eligibility Criteria for ALS
• Proposed ALS Hospice Eligibility Criteria
• Working Relationships
• “Sometimes They Get it Wrong”
• Symptoms and Clinical Issues
• What Can Hospices Do? Recommendations for Enhancing Access
• ALS: A Primer
• Resources 

Additional ALS Resources

Facts and Figures

NHPCO’s Statistics and Trends: Findings based on NHPCO’s National Data Set, an annual online survey of hospice and palliative care providers.

View a sample page of the report, comparing ALS to other diagnosis statistics.  Complete National Data Set reports are available to NHPCO members only, and may be accessed on the web page listed above.

Web Sites

Caring Connections: A program of the National Hospice and Palliative Care Organization (NHPCO), Caring Connections is a national consumer and community engagement initiative to improve care at the end of life, supported by a grant from The Robert Wood Johnson Foundation.

ALS Association (ALSA): The only national not-for-profit health organization dedicated solely to lead the fight against ALS. Its mission is to lead the fight to cure and treat ALS through global, cutting-edge research, and to empower people with Lou Gehrig’s disease and their families to live fuller lives by providing them with compassionate care and support.

Muscular Dystrophy Association (MDA): A national voluntary health agency dedicated to conquering more than 40 neuromuscular diseases that affect a million Americans of all ages.

National Institute of Neurological Disorders and Stroke (NINDS): The mission of NINDS is to reduce the burden of neurological disease - a burden borne by every age group, by every segment of society, by people all over the world. View an ALS Fact Sheet.

Ordering

Order your copy of “Expanding Access to Hospice Care for People with ALS” from NHPCO’s Marketplace.