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When to Consider Hospice for ALS

Patient with ALS with their caregiver

Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig’s disease, is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord, leading to muscle weakness and paralysis over time. As ALS progresses, patients require increasing levels of care and support, causing many families to consider hospice care for their loved ones. We explore when hospice might be right for patients with ALS, providing guidance for families navigating this difficult decision.

Signs that Hospice May Be Appropriate for Patients with ALS

Hospice care is typically suitable for patients in the end stages of ALS, generally identified when they have a life expectancy of less than six months due to disease progression. Several indicators suggest that hospice may be the appropriate choice, including: 

  • Significant decline in functional abilities (paralysis) 
  • Impaired nervous system 
  • Inability to verbally communicate, chew, or drink 
  • Respiratory complications 
  • Decline in cognitive function 

Hospice Benefit Qualifiers for ALS Patients

To be eligible for hospice benefits, patients with ALS must identify with the following qualifiers: 

  • Refusal of tracheostomy and invasive ventilation 
  • Critically impaired respiratory function evidenced by: 
  • FVC <40% 
  • Dyspnea at rest 
  • Orthopnea 
  • Use of accessory muscles 
  • Paradoxical abdominal motion 
  • Respiratory rate >20 
  • Reduced speech volume 
  • Symptoms of sleep-disordered breathing 
  • Frequent awakening 
  • Daytime sleepiness 
  • Unexplained headaches 
  • Unexplained confusion 
  • Unexplained anxiety 
  • Unexplained nausea 
  • Severe nutritional deficiency, defined as dysphagia with progressive loss of >5% body weight 

Benefits of Hospice Care for Patients with ALS

Hospice offers several benefits to patients with ALS along with their loved ones, including: 

  • Pain & symptom management: ALS can cause pain and discomfort as it progresses. When symptoms become difficult to manage, transitioning to hospice care can maximize comfort and quality of life during end-stage ALS. 
  • Emotional and spiritual support: Hospice teams include individuals such as social workers and volunteers to provide emotional and spiritual support for patients with ALS throughout their end-of-life journey. 
  • Coordinated care: Hospice care teams work closely with their patients’ physician and other healthcare providers to ensure patients receive comprehensive end-of-life care.  
  • Caregiver relief: Hospice offers the ability to relieve the burden from family members or a caregiver. It also offers education to help family members support their loved ones throughout hospice care. This support extends to the bereavement and grief period following the passing of a loved one. 

Hospice Care for ALS at Residential Healthcare Group 

Hospice care can provide many benefits for patients dealing with ALS. At Residential Healthcare Group, we understand the importance of ensuring patients with ALS receive the quality care they deserve, especially as it progresses. Our customized Advocacy, Life Enrichment, and Supportive Services hospice program addresses a full range of ALS symptoms, while promoting dignity and peace of mind for patients and family members alike.