How to Qualify for Hospice With ALS

To qualify for hospice with ALS (amyotrophic lateral sclerosis, or Lou Gehrig's disease), a hospice physician, plus the person's attending physician if there is one, must certify a life expectancy of six months or less if the disease runs its normal course. For Medicare to pay, the person must also have Part A and choose comfort-focused care. An ALS diagnosis alone is not enough. Physicians look mainly at breathing, then swallowing and nutrition, how fast function is being lost, and the person's choices about a ventilator or feeding tube. There is no national ALS checklist: Medicare's regional contractors each publish their own guidance, and the numbers differ. You do not have to wait for the final days to ask for an evaluation, and care is usually given at home.

What Medicare requires

• Part A coverage. See below if your loved one is under 65 or not yet on Medicare.
• A physician's certification. For the first 90-day period, the hospice medical director or another hospice physician certifies the prognosis, and so does the attending physician if the person has one. A neurologist can be that attending physician if the person chooses. A nurse practitioner cannot certify the prognosis. The certification is a clinical judgment, but it must be backed by records and a brief written explanation of the findings.
• The person's choice. The person signs an election statement choosing comfort care instead of treatment to cure the illness. If they are physically or mentally incapacitated, a representative with authority under state law can sign.

What physicians look for in advanced ALS

To guide that judgment, Medicare's regional contractors publish Local Coverage Determinations (LCDs). These are guidelines for hospice physicians and claims reviewers, not national rules and not a checklist for families. As one contractor's example, CGS's L34538 says two things are critical in end-stage ALS: the ability to breathe and, to a lesser extent, the ability to swallow. It says a person should show one of three patterns in the 12 months before hospice first certifies:

• Critically impaired breathing: vital capacity below 30% of normal (if a test is available), shortness of breath at rest, and declining mechanical ventilation, with any external ventilation used for comfort only.
• Rapid progression plus critical nutrition problems: food and fluid intake too low to sustain life, continuing weight loss, dehydration, and no artificial feeding sufficient to sustain life.
• Rapid progression plus a life-threatening complication: recurrent aspiration pneumonia (with or without tube feeding), an upper urinary tract infection (such as a kidney infection), sepsis, recurrent fever after antibiotics, or a stage 3 or 4 pressure ulcer.

In that guideline, rapid progression means all of these: from walking independently to a wheelchair to bed-bound; from normal speech to barely intelligible or unintelligible speech; from a normal to a pureed diet; and from independence in most or all daily activities to needing major help with all of them. CGS also expects a baseline: a Karnofsky or Palliative Performance Scale score under 70%, plus needing help with two or more of feeding, walking, continence, transferring, bathing and dressing. It advises an exam by a neurologist within three months of the hospice assessment, to confirm the diagnosis and help with the prognosis.

The numbers differ by region

Three contractors handle hospice claims across the country, and each describes ALS differently:

The signs in Wellpoint's list include shortness of breath at rest or lying flat, use of accessory breathing muscles, a weak cough, reduced speech volume, disturbed sleep or daytime sleepiness, and unexplained headaches, confusion, anxiety or nausea.

All three leave room for individual judgment. Each says a person who does not meet its criteria may still qualify if the record documents why. CGS says that “should” in its disease guidelines means a guideline gets great weight at review, not that meeting it is obligatory, and it also accepts documented decline under its general guidelines, such as recurrent infections, weight loss with no reversible cause, more ER visits or hospital stays, or needing help with more daily activities. Ask the hospice which contractor's guideline it works under.

Do BiPAP, a ventilator or a feeding tube affect eligibility?

They can, but none of them is an automatic bar, and families do not have to accept or refuse one to be evaluated. CGS and Wellpoint both say artificial ventilation or artificial feeding does not necessarily rule out hospice, but that starting either one can significantly change a six-month prognosis. That is why the evaluating physician will ask about them.

• BiPAP or other noninvasive ventilation: no Medicare rule makes your loved one give it up. CGS allows external ventilation used for comfort, and Wellpoint's guideline applies with or without it. The National Institute of Neurological Disorders and Stroke (NINDS) says it may decrease the discomfort some people with ALS feel while breathing. Ask the hospice to confirm it will supply and manage the machine.
• Tracheostomy and ventilator: this is the hard case. Medicare's eligibility rule does not mention ventilators, but CGS's breathing pattern and Wellpoint's guideline are written for people who decline invasive ventilation, so the physician would have to document why the prognosis is still six months or less. Ask directly whether the hospice can care for someone on a ventilator, and who provides the staff and equipment.
• Feeding tube: a person can be on hospice with a feeding tube. Wellpoint's guideline and CGS's complication pattern apply with or without one; CGS's nutrition pattern does not fit someone whose tube feeding is sufficient to sustain life.

These choices belong to the person. Federal rules give hospice patients the right to refuse care or treatment, and MedlinePlus advises people with ALS to discuss their wishes about artificial ventilation with family and providers. Declining a device does not by itself make someone eligible, and choosing one does not by itself rule hospice out.

Can hospice for ALS be at home?

Yes. Medicare says hospice is usually given at home, or wherever the person lives, such as assisted living or a nursing home. At home, the plan of care can include:

• Visits and a number to call: nursing, aide, social work and counseling visits, with a hospice nurse and doctor on call 24 hours a day, 7 days a week.
• Equipment and supplies in the plan of care, which the hospice must provide. Ask specifically about a hospital bed, lift, suction machine, BiPAP and cough-assist device.
• Medicines for symptoms, such as drugs for excess saliva and secretions, anxiety and pain, with a copay of up to $5 per prescription. The National Institute on Aging (NIA) says morphine or other pain medicines can sometimes ease the feeling of breathlessness.
• Therapy (physical, occupational or speech-language) when it helps control symptoms or maintain daily function.
• Extra help in a crisis: continuous nursing at home for as much as 24 hours a day during a period of crisis, or short-term inpatient care for symptoms that cannot be managed at home. See the 4 levels of hospice care.

What home hospice does not do is provide a caregiver around the clock. NIA notes that family and friends provide the day-to-day care, with the team coaching them, and NINDS says people with ALS eventually cannot stand, walk, use their arms or get out of bed on their own. So ask early how the plan would work for your family: who is there at night, who is trained on suction and BiPAP, who responds in a breathing crisis, and when inpatient respite (up to five days at a time) can give caregivers a break. See does hospice pay for 24-hour care and hospice if you live alone. For how the team manages breathing, communication, skin care and emotional support day to day, see hospice care for ALS.

When to ask, and why not to wait

Hospice does not require someone to be in their final days; the test is prognosis. NIA notes that people sometimes start too late to get the full benefit, and that starting early may provide months of meaningful care. Timing matters in a particular way with ALS. NINDS says people with ALS usually remain able to reason, remember and understand, although some have problems with language or decision-making and some develop a form of dementia. ALS can take away speech and movement while thinking stays clear, so earlier enrollment gives the person a better chance to take part in decisions about breathing support, feeding and where they want to be, and gives the family time to set up equipment and communication tools.

What if your loved one is under 65 or not yet on Medicare?

ALS has its own rules. Social Security waives both the five-month wait for disability benefits and the 24-month wait for Medicare for people with ALS, and Medicare.gov says they get Part A and Part B automatically the month disability benefits start. Social Security also treats ALS claims as priority cases. Without Medicare, ask about Medicaid or private insurance. Veterans should also ask the VA: ALS that appears any time after discharge is generally presumed service-connected, and VA hospice has no copays for enrolled veterans who meet the clinical need. See hospice for veterans.

Can ALS treatments continue on hospice?

Comfort treatments do, and some ALS drugs are an open question. Medicines for secretions, anxiety, breathlessness and pain are central to the plan, and noninvasive breathing support used for comfort can be part of it; confirm that the hospice will supply and manage the machine. Drugs aimed at slowing the disease, such as riluzole, edaravone and tofersen, are different: Medicare's hospice benefit pays for drugs used mainly for pain and symptom relief, so ask before enrolling which of them the hospice will cover and what it would cost to keep any it will not. Medicare.gov says the hospice must tell you if a drug or service is not covered, why, and whether you would have to pay. For elections on or after October 1, 2026, it must also give you a written addendum within the first 5 days listing what it considers unrelated to the terminal illness, and update it within 3 days if a change in the plan of care affects it. A drug taken for ALS itself may not appear on that list, because the list covers only what the hospice considers unrelated, so ask about these drugs directly. Care for problems truly unrelated to ALS continues under regular Medicare, with its usual deductibles and coinsurance.

Frequently asked questions

What FVC qualifies for hospice with ALS?

There is no national number. CGS's guideline uses a vital capacity below 30% of normal, Wellpoint Federal's uses a forced vital capacity below 40% of predicted along with listed signs, and Palmetto's gives no number. A breathing test is not always needed: CGS says “if available,” and Wellpoint counts 3 or more signs if the test cannot be done.

Is there an ALSFRS-R score that qualifies?

No. None of the three guidelines mentions the ALSFRS-R rating scale. CGS does say other clinical findings not on its list may support the prognosis if they are documented, so a falling score in the chart can still be part of the picture.

How fast does ALS usually progress?

It varies widely, which is why prognosis is an individual judgment rather than a formula. NINDS says most people with ALS die from respiratory failure, usually within three to five years of first symptoms, and about 1 in 10 survive 10 years or more. CGS's guideline says some people decline rapidly while others progress more slowly.

What if my loved one lives past six months or seems to stabilize?

Hospice can continue. Medicare allows two 90-day periods, then an unlimited number of 60-day periods, as long as a hospice physician recertifies the prognosis. A hospice physician or nurse practitioner must also see the person face to face within 30 days before the third period and each one after; video is allowed in many cases through December 31, 2027. Living longer than expected is not in itself a reason to end the benefit. Someone who stabilizes but is still expected to decline can stay; someone who no longer has a six-month prognosis can be discharged and return later. See what happens if you live longer than 6 months.

What if my loved one can no longer sign or speak?

A representative with authority under state law, such as a health care agent, can sign the election statement if the person is physically or mentally incapacitated. If your loved one can still express their wishes, naming that person now avoids a scramble later. See hospice and power of attorney.

Do we have to sign a DNR?

No. Medicare does not require a DNR for hospice, and enrolling in hospice is not itself a DNR. If your loved one wants one, ask what form emergency medical services will honor, because that is set state by state. See does hospice require a DNR.

Can we keep the neurologist or ALS clinic?

Your loved one can name the neurologist as attending physician when electing hospice. Other care for ALS and related conditions has to be given or arranged by the hospice team, so check with the hospice before ALS clinic visits, or Medicare may not pay. See can you keep your own doctor.

What if the hospice says it is too early?

Ask which findings are missing and what would change the answer, keep the dated record, and ask again when something changes. You can also ask another hospice to evaluate. In the meantime, palliative care can help with symptoms alongside ALS treatment (hospice vs. palliative care).

What to do next

If your loved one with ALS is declining quickly, struggling to breathe or swallow, or facing decisions about ventilation or feeding, ask for a hospice evaluation sooner rather than later, and ask whether there is any charge. You can ask the neurologist or primary doctor for a referral or contact a hospice directly: under Medicare's admission rule, the decision rests on the hospice physician's recommendation, with input from the attending physician if there is one.

• Write down the dates of recent changes in speech, swallowing, mobility and breathing, and any breathing test results. CGS notes that ALS tends to progress at a fairly constant rate in each person, so this history helps predict prognosis.
• Ask whether the hospice has experience with ALS and how it handles BiPAP, secretion management and communication devices.
• Ask how after-hours support works and who responds during a breathing crisis.
• Discuss the person's wishes about feeding and ventilation before the evaluation if possible.

This page does not tell you whether your loved one qualifies; it tells you what to ask for. We are not your medical provider, and this is not medical advice. When you're ready, compare hospices near you. You may also want to read what happens at a hospice evaluation.