End-of-Life Care for ALS
It's the unknowns about amyotrophic lateral sclerosis that can make the disease so challenging. People with the disease experience different rates of decline and families have different values concerning end-of-life care. That's why it's important to find a hospice provider who will listen and understand your unique needs.
Discontinuing medical support for ALS (Lou Gehrig's Disease) is a profound decision. Early and honest conversations about hospice offer clarity, reduce fear and ensure care reflects what matters most to patients and their families.
Specialized hospice care for ALS
Breathing issues often lead to physical and emotional stress for people with ALS. A time may come when you are weighing the benefits and drawbacks of mechanical ventilation, including tracheostomy. We’re here to help with whatever choice you make. Our personalized care for breathing issues includes:
- Medicines to help with breathing distress
- Regular visits from a hospice nurse to anticipate needs and intervene before a breathing crisis occurs
- Strategies to optimize current lung function
- Advance care planning to document what medical actions should be taken, or withheld, when a patient is no longer able to communicate
Swallowing difficulties also increase with late-stage ALS. When eating and drinking become impossible, a patient or a family member may choose feeding tubes or intravenous (IV) solutions to prevent weight loss. Feeding tubes come with both benefits and burdens for those near the end of life. How we help:
- Support from a dietitian
- Visits from nurses and aides to help with feeding and education
- Full support should patients decide the risks outweigh the benefits
People with ALS typically retain their mental capacity until late in the disease progression. Because they are aware of an increasing loss of function, patients can become frustrated and depressed. We offer the following benefits to support you in the best possible quality of life.
- Occupational, speech and physical therapy services
- Pain management and infection control
- Medicines to help manage anxiety
- Medical equipment, including specialized chairs and beds
- Hospice social worker to navigate the medical system and gain access to benefits
- Hospice chaplain
When is hospice appropriate for ALS?
Choosing hospice care includes two important parts: medical eligibility and your choice. Hospice is available to patients with a life expectancy of six months or less, as determined by your doctor and a hospice medical director. Doctors consider ALS eligibility criteria, medical history and clinical judgement.
A survey in the journal Neurology asked ALS caregivers to share their hospice experience. Patients using hospice care were significantly more likely to stay in their preferred location, die outside the hospital and get appropriate pain management. Most of the caregivers said their loved one was at peace at the time of death.
Ultimately, the decision to start hospice is made by a patient or family member. You can also decide to stop hospice at any time. Care is provided wherever you call home, whether in a hospital, nursing home, assisted living or your personal residence.
Who pays for hospice?
Hospice is covered by Medicare, Medicaid and most private insurance companies. Hospice is a financial relief for many because care related to the life-limiting illness, such as medication, equipment and supplies, is covered by hospice benefits, with few or no out-of-pocket expenses.
An evaluation is the first step for starting hospice or palliative care. Doctors typically make referrals, but you, your family or caregivers may request an evaluation. Call a local Compassus office to learn about referrals and care for ALS.
- ALS research from ALS.org
- National ALS registry