Hospice Care for ALS
Hospice is a service that provides compassionate care and comfort for terminally ill patients at the end of life. Most people receive hospice care at home, though it is also available in hospice centers, hospitals, nursing homes, and other long-term care facilities.

The ultimate goal of hospice is to provide quality of life at the end of life. It allows families to spend meaningful time together and focus on each other instead of the disease.

Who is eligible?

​Hospice care is available for anyone with a terminal illness and a doctor’s referral. Your neurologist must certify that you have an estimated six months or less to live.

Hospice does not attempt to prolong life through treatment. Thus, if you are currently taking Rilutek® or Radicava® or are enrolled in a drug trial, hospice will not accept you.

Hospice is voluntary. You can disenroll at any time.
Hospice is a general term that refers to an approach to end-of-life care. Hospice providers can be nonprofit, for-profit, faith-based, or government-run.

Who pays?

​Insurance should cover all of your hospice care at home. Medicare, private insurance, the VA, and Medicaid (in most states) will cover standard expenses. If you have Medicaid, check to make sure your state’s program covers hospice care.

Inpatient care at hospice facilities (aside from short-term respite stays) is not covered by Medicare, Medicaid, or private insurance.

What does hospice provide?

​Each hospice provider is unique, but hospice care typically includes:
  • An interdisciplinary care team led by a medical director
  • An individualized care plan
  • Pain and symptom management
  • Medications, medical supplies, and some equipment
  • Home visits by a nurse once a week
  • Home visits by a nurse’s aide a few times a week to assist with bathing and dressing
  • Emotional and spiritual counseling for the patient and/or family
  • Bereavement support for surviving family members for one year​
Once enrolled, hospice will coordinate everything for you. They will order and provide your medications and durable medical equipment like respiratory equipment, a hospital bed, and some bathroom equipment.

How do we get started?

​When you and your neurologist agree that it is time, your neurologist will submit a referral to the hospice provider of your choice. The provider will meet with you to develop a plan that addresses your physical, psychological, emotional, and spiritual (if requested) needs. Service can begin within one to two days of referral, or earlier if urgent.

How can we find a good hospice provider?

Talk with your neurologist, ALS clinic social worker, or local ALS organization for recommendations for local hospice care providers that have experience working with ALS patients. This is very important because some hospices do not understand the specific care and equipment needs of ALS patients.

Tips for People with ALS

  • Discuss hospice with your loved ones. Though not an easy conversation, it is important to discuss your wishes with your loved ones as early as possible. This can help avoid confusion down the road.

  • Coordinate with your support team. Talk about hospice with your local ALS organization and ALS clinic social worker. They can put you in touch with a hospice provider and help guide you through the process.​
 
  • Revisit your advance directives. Look back at your advance directives to make sure they reflect your current wishes for medical treatment should you become unable to communicate or make decisions.
 
  • Get your expensive equipment first. Before enrolling in hospice, talk with your ALS Clinic team to make sure you have all the durable medical equipment you need. This is very important, because once enrolled in hospice, you will not be eligible for expensive items like a custom power wheelchair or speech-generating device. If you need to enroll in hospice prior to receiving these items, ask if the equipment is available through your local ALS organization loan closet.  
 
  • Get a feeding tube first. If you want a feeding tube, you should get it prior to enrolling in hospice because it won’t be covered once you’re enrolled. If you decide later that you want a feeding tube, you can disenroll from hospice and have your doctor re-enroll you again after discharge from the hospital.
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  • Try hospice’s respite care program. Once enrolled in hospice, you can receive up to five days of respite care in an inpatient facility once a month—at no cost to you—if a bed is available. This can provide your caregiver a much-needed break. You can bring all of your own equipment with you, such as your breathing equipment, power wheelchair, and communication devices.