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Hospice Care for ALS

ALS takes the body. The person is still fully here, and every decision still belongs to them.

Care by condition

Hospice when ALS has taken movement and breath

ALS takes movement, speech, and breath while the person is still fully there. Families come to hospice when breathing support is no longer a distant question, or when every transfer already needs equipment and two sets of hands.

Nurses treat breathlessness, secretions, and pain. The team brings the hospital bed, the lift, and the communication tools that let someone who cannot speak still decide. Because thinking usually stays intact, we talk with the patient, not around them. That changes every conversation in the house.

Care is at home on the Central Coast, in a private house or in the community where they already live. A real person answers the phone at any hour. Once on service, an on-call nurse is reachable through the night.

When to call

Signs it may be time

A physician still certifies eligibility. Breathing, speech, and transfers are usually the turning points.

  • Breathing is harder, or a decision about breathing support is on the table
  • Speech is fading or already gone
  • Transfers need a lift or two people
  • Swallowing is no longer safe
  • Weakness keeps advancing and weight is falling
  • The person is asking about comfort instead of more interventions
  • Caregivers cannot manage the equipment and the care alone
  • Nights are spent watching the next breath
Common Questions

ALS and hospice

Can someone with ALS qualify for hospice?

Yes. ALS is a hospice diagnosis when breathing, swallowing, or the work of daily care have declined enough that a physician certifies a life expectancy of six months or less if the illness runs its normal course. A six-month prognosis does not mean six months. Many patients live longer and can leave hospice at any time.

Will hospice tell us whether to use a ventilator?

No. Breathing support is the person's decision, and often the hardest one ALS asks of a family. We explain what to expect with support and without it. We do not recommend the decision in either direction. Whatever they choose, the team treats breathlessness and keeps them as comfortable as the illness allows.

How do you communicate with someone who has ALS and can no longer speak?

We use the tools they already have — a board, a tablet, eye-gaze, or a simple yes and no — and we bring what the benefit covers when those tools need to come to the house. Because cognition usually stays intact, we wait. We do not guess. The person is still the one in charge of their own care.

What equipment do you bring when ALS has made transfers unsafe?

Equipment related to the hospice diagnosis is included: a hospital bed, a lift for transfers, and the supplies that keep skin intact when the person can no longer turn. These usually arrive within 24 hours of admission. Aides teach the family how to use them so a transfer does not become a crisis.

Does ALS take the mind as well as the body?

Usually not. Most people with ALS stay fully aware. That changes every conversation. We talk with the person in the bed — about breath, about a transfer, about fear — not about them in the hallway.

Is hospice only for cancer?

No. We care for people with heart disease, lung disease including COPD, dementia and Alzheimer's, stroke, kidney or liver disease, ALS and other neurologic illness, Parkinson's disease, and general decline with advanced age.

How much will this cost our family?

For most patients covered by Medicare Part A, nothing for the hospice services themselves. We verify your benefits and explain what is covered before care begins.

Is care available in Spanish?

Yes. Say so on your first call and we will match you with a team member who can speak with you in Spanish.

Have more questions about ALS care?

View all FAQs
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Talk with us about ALS care

Call any hour. We will listen first, then explain what care at home can look like when ALS is this far along.