Hospice eligibility guidelines: ALS

ALS indicators

The guidance describes three pathways. Any one supports the prognosis. It looks at change over the 12 months before certification.

Read this table together with the general decline indicators and the non-disease-specific baseline (functional status and dependence in activities of daily living) on the eligibility guidelines overview.

Points specific to ALS

The guidance notes that ALS tends to progress in a linear fashion, so a patient's past rate of decline predicts the future rate reasonably well. It also notes that no single variable deteriorates at a uniform rate in all patients, so multiple measures are needed. The pace of change over the past 12 months matters more than any single value.

Noninvasive ventilation does not rule out hospice. Many patients use bilevel support for comfort and still decline tracheostomy and invasive ventilation. The guidance also recognizes that a patient who has chosen invasive ventilation or artificial feeding may have a longer prognosis, and eligibility then depends on other evidence of decline. Tell us what respiratory and feeding equipment the patient uses and who supplies it, so that nothing lapses at admission. We identify all respiratory equipment in use, including noninvasive ventilation and cough-assist devices, and review orders, goals of care, supplier, maintenance and payment responsibility before changing the arrangement, coordinating any replacement so there is no unplanned interruption.

The ALS Functional Rating Scale is not part of the LCD guidance but is useful supporting evidence of the rate of change. Frontotemporal dementia occurs in a minority of patients with ALS and affects decision-making capacity. Note it when present and identify the legal representative.

Supporting documentation

• Date of diagnosis and of symptom onset, and region of onset (bulbar or limb).
• Serial vital capacity or other pulmonary measures from the ALS clinic, with dates.
• Respiratory symptoms: dyspnea at rest, orthopnea, weak cough, morning headache, hours of noninvasive ventilation per day.
• The patient's documented decision about tracheostomy and invasive ventilation.
• Functional change over 12 months in walking, speech, swallowing, diet texture and self-care.
• Weight trend. Presence of a feeding tube, whether it is used, and whether weight loss continues.
• Aspiration events, infections and pressure injuries.
• POLST and advance directive status.

Comorbidities and other neurologic disease

The LCD guidance also weighs comorbidities. The presence and severity of conditions such as chronic obstructive pulmonary disease, congestive heart failure, ischemic heart disease, diabetes, neurologic disease (stroke, ALS, multiple sclerosis, Parkinson's disease), renal failure, liver disease, malignancy, AIDS and dementia can support a prognosis of six months or less even when the primary diagnosis alone does not. Document each one with its current severity and how it limits the patient.

This LCD section is specific to ALS. Parkinson's disease, multiple sclerosis and other neurodegenerative conditions are assessed using the general decline indicators, the functional baseline, nutritional status and complications, often in a pattern close to the dementia or stroke guidance.

Not sure? Call

People with ALS often benefit from an early conversation about what they want as breathing and swallowing change. Prognosis is rarely clear cut. If you are weighing a referral, call and talk the case through with a hospice nurse, or ask for a physician-to-physician conversation with our medical director. A call is not a referral and does not commit the patient to anything.

If the patient is not hospice eligible now, we will say so and tell you what we would watch for. Some patients are better served by palliative care first. When you are ready, use Refer a patient. The hospice medical director, with the attending physician if there is one, makes the certification decision under 42 CFR 418.22.

A page you can share with the family

Families often ask the same questions you are weighing, in different words. Our family guide, hospice care for ALS and Parkinson's disease, explains in plain language what hospice does for this illness, what signs are worth raising with a doctor or nurse, and how care is paid for. It does not give an eligibility verdict. You are welcome to share it before or after a goals-of-care conversation.