Because amytrophic lateral sclerosis (ALS) is a progressive disease that progresses differently for everyone, specific criteria need to be met before healthcare providers recommend hospice care for the condition. When the requirements are met, hospice care can help with the effects of ALS rapid progression.
What Is ALS?
Amyotrophic lateral sclerosis, also known as ALS and Lou Gehrig’s Disease, is a rare, fatal progressive degenerative disease that affects pyramidal motor neurons, usually begins in middle age, and is characterized especially by increasing and spreading muscular weakness. The life expectancy of an individual diagnosed with ALS varies depending on a variety of factors. Generally, the average life expectancy for people with ALS is two to five years from diagnosis. However, some individuals may live longer, while others may live with the disease for less time.
Hospice Criteria for ALS
Patients will be considered to be in the terminal stage of ALS if they meet the following criteria, fulfilling one, two, or three:
- The patient must demonstrate critically impaired breathing capacity with ALL of the following characteristics in the past 12 months preceding initial hospice certification:
- Vital capacity (VC) <30% of normal
- Significant dyspnea at rest
- Requiring supplemental 02 at rest
- Patient declines artificial ventilation
- Patient must demonstrate BOTH:
A. Rapid progression of ALS as demonstrated by ALL of the following within the 12 months preceding initial hospice certification:
- Progression from independent ambulation to wheelchair or bed-bound status
- Progression from normal to barely intelligible or unintelligible speech
- Progression from normal to pureed diet
- Progression from independence in most or all activities of daily living (ADLs) to needing major assistance by a caretaker in all ADLs
B. Critical nutritional impairment as demonstrated by ALL of the following within 12 months preceding initial hospice certification:
- Oral intake of nutrients and fluids insufficient to sustain life
- Continuing weight loss
- Dehydration or hypovolemia
- Absence of artificial feeding methods
- BOTH of the following:
A. Rapid progression of ALS (2.A. or above)
B. Life-threatening complications as demonstrated by ONE of the following within the last 12 months preceding initial hospice certification:
- Recurrent aspiration pneumonia (with or without tube feedings)
- Upper UTI, e.g., pyelonephritis
- Recurrent fever after antibiotic therapy
- Decubitus ulcers, multiple, stage 3-4
In end-stage ALS, two factors are critical in determining prognosis: the ability to breathe and, to a lesser extent, ability to swallow.
If a patient meets the medical criteria above, they are, by definition, eligible to receive hospice services. Some patients may not meet the criteria but may still be eligible for hospice care due to comorbidities or rapid functional decline. Contact one of our local Compassus programs for consultations.