Hospice for ALS (Lou Gehrig’s Disease) in Metro Detroit

Updated October 2026. Written and reviewed by the Lily Hospice clinical team.

Hospice for ALS brings a nurse, breathing and swallowing support, equipment and caregiver help to the home, at no cost under Medicare. It is usually time to ask when breathing or swallowing weakens and the person has chosen comfort over a permanent ventilator. Lily Hospice serves Oakland, Macomb and Wayne counties.

Lily Hospice is a family-owned, Medicare-certified, ACHC-accredited hospice based in Troy. In Medicare’s most recent Care Compare data, a Lily nurse or social worker visited 71.3% of our patients in their last three days of life, against 48.3% nationally and 63.3% across Michigan. You can read every one of our measures on the hospice quality scores page.

ALS, amyotrophic lateral sclerosis, also called Lou Gehrig’s disease, takes away movement, speech, swallowing and finally breathing, while the mind usually stays clear. That is what makes it different from most illnesses hospice cares for: the person living with ALS is very often the one making the decisions, and the family is doing an enormous amount of physical care, often for years. This page explains where hospice fits. Our broader page on Parkinson’s, ALS and other neurological disease covers the related conditions.

When is it time to ask about hospice with ALS?

ALS does not follow one timetable. Some people decline over many years and others over months. The neurologist and the hospice physician decide eligibility, and no single item decides it. What families and ALS clinic teams usually notice first is:

• Shortness of breath when lying flat, when talking, or at rest
• Needing the BiPAP for more of the day, not only at night
• A weaker cough, more trouble clearing saliva, or a recent pneumonia
• Choking or coughing at meals, meals that take an hour, or steady weight loss
• Needing help with nearly every part of daily care
• A clear decision not to have a tracheostomy and permanent ventilator, or not to have a feeding tube

If several of these are true, it is not too early to call. Most families tell us afterward that they wish they had called sooner. The wider picture is in signs it may be time for hospice and the Is It Time? family guide.

The two decisions that shape ALS care

Breathing support. The ALS Association notes that breathing is eventually affected in everyone with ALS. Many people use noninvasive ventilation, a mask and a BiPAP machine, which eases breathlessness and improves sleep. The harder question is whether to go on to a tracheostomy and a permanent ventilator when the mask is no longer enough. Some people choose it. Many do not. There is no wrong answer, and it is the person’s own decision to make. Hospice is the path for people who decide against a permanent ventilator, and also for people who have lived on one and decide it is time to stop. In both cases the team’s job is to make sure breathlessness and fear are treated fully.

Feeding tubes. A feeding tube can make eating safer and less exhausting, and many ALS clinics suggest one while breathing is still strong. Someone who already has a tube keeps it on hospice. Someone who never wanted one is not pressed to have one. Our guide on when a dying person stops eating and drinking explains what the body needs near the end.

Ideally these choices are written down while speech is still easy. Our social worker helps put them into the forms Michigan hospitals and paramedics recognize, including a patient advocate designation and an out-of-hospital do-not-resuscitate order when that is wanted.

What hospice does for someone with ALS

Breathing comfort at home. The nurse manages BiPAP comfort, secretions, cough-assist and suction, and oxygen when it helps. Medicines that relieve the feeling of breathlessness and the anxiety that comes with it are kept in the house, with clear written steps for when to use them. Our guide to breathing changes at the end of life describes what families see and what helps.

A plan for the night. ALS symptoms do not keep office hours. A nurse answers at any hour and comes out when a visit is needed. See who answers a hospice phone at night.

Equipment and hands. A hospital bed, pressure-relieving mattress, lift, suction machine and other equipment related to the illness are delivered under the hospice benefit. Aide visits for bathing and repositioning protect skin and give the family caregiver a rest.

Staying in the conversation. Losing speech is not losing a voice. The team works with whatever the person already uses, a letter board, an eye-gaze device, a tablet, or yes-and-no signals, and takes the time to wait for the answer.

Care for the caregiver. ALS caregiving is physical, around the clock, and lonely. The social worker and chaplain (for any faith or none) support the whole household, respite care of up to five days gives the caregiver real rest, and grief support continues for the family afterward. Our guide to anticipatory grief names what many ALS families feel long before the end.

Paying for hospice with ALS: Medicare, the VA and Michigan help

Medicare. Most people have to wait 24 months after qualifying for Social Security disability before Medicare begins. People with ALS do not. Medicare starts when disability benefits start, whatever the person’s age, and Medicare Part A covers hospice in full. For plan questions, see Medicare Advantage and hospice.

Veterans. The VA presumes ALS is connected to military service for veterans who served 90 or more continuous days on active duty (38 CFR 3.318). That can open VA disability compensation and other benefits for the veteran and surviving family, and it works alongside hospice. A county veterans service officer can file the claim at no charge. Lily follows the We Honor Veterans framework; start at our veterans page.

Michigan resources. ALS of Michigan, a nonprofit in Southfield at (800) 882-5764, offers equipment loans, a communication-device center, support groups and respite help to Michigan families. The Harry J. Hoenselaar ALS Clinic at Henry Ford Health in Detroit is a long-standing ALS Association Certified Treatment Center of Excellence. Hospice works with both rather than replacing them.

When it is not time for hospice yet

Many people with ALS are still pursuing clinic care, therapies and trials, and are nowhere near the end of life. Lily’s Pathways palliative program can help with symptoms and planning during that time, and we reassess as things change. The difference is explained in hospice vs. palliative care.

Common questions

When should someone with ALS start hospice?

When breathing or swallowing is clearly getting weaker, weight is falling, and the person has decided against a tracheostomy and permanent ventilator, or wants to stop one. A physician makes the eligibility decision. With ALS it is better to ask early, because changes can come quickly.

Can he keep using his BiPAP on hospice?

Yes. Noninvasive ventilation such as BiPAP is a comfort measure for many people with ALS, and hospice continues it for as long as it helps. The same is true of a cough-assist device and suction.

Does choosing hospice mean giving up the ALS clinic?

No. Her neurologist can stay involved as the attending physician and work with the hospice team. What changes is that care related to ALS is coordinated through the hospice, and the nurse comes to the house. See keeping your own doctor on hospice.

What if she already has a feeding tube?

She can keep it. A feeding tube that is already in place can still be used on hospice for food, fluids and medicines, at whatever amount stays comfortable. Whether to place a new tube is a personal decision the team will talk through honestly.

Will the end be frightening? We are afraid of choking.

Families fear this more than anything else, and it is the thing hospice plans for first. Medicines for breathlessness and anxiety are in the house before they are needed, the nurse teaches you how to use them, and a nurse answers the phone at any hour. With that plan in place, breathlessness and fear can be treated quickly at home.

Is hospice covered if he is under 65?

Usually yes. People with ALS who qualify for Social Security Disability Insurance get Medicare without the usual 24-month wait, and Medicare Part A covers hospice in full. Michigan Medicaid and most private plans also cover hospice. See how much hospice costs in Michigan.

Does Lily come to homes across metro Detroit for ALS?

Yes. Lily Hospice serves all of Oakland, Macomb and Wayne counties from Troy, at home and in assisted living and nursing facilities. A real person answers (248) 955-5100 at any hour, and a nurse can usually visit within a day.

Where we come to you

Lily Hospice cares for families at home and in assisted living and nursing homes across Oakland County, Macomb County and Wayne County, from our office at 2125 Butterfield Dr, Suite 299, in Troy. Related guides: Parkinson’s, ALS and neurological disease, after a stroke, dementia, COPD and lung disease, frailty and advanced age, and what the family does day to day on hospice. See the full list of hospice services.

General education, not medical advice. Decisions about breathing support, feeding tubes and hospice are made by the person with ALS and their physician, and the physician decides hospice eligibility.

Hospice isn’t giving up. It’s showing up. Call (248) 955-5100. A real person answers, 24 hours a day.