Amyotrophic Lateral Sclerosis (ALS): What to Expect

When facing end-stage ALS (Amyotrophic Lateral Sclerosis), individuals and their loved ones should be prepared for the progressive nature of the disease. At this advanced stage, ALS leads to severe muscle weakness, paralysis, and respiratory difficulties. Patients may experience significant challenges with mobility, speech, swallowing, and breathing. Muscle atrophy becomes more pronounced, affecting various parts of the body. Additionally, individuals may encounter respiratory complications such as shortness of breath, difficulty coughing, and respiratory infections. The progression of ALS can also impact communication abilities, requiring alternative methods of communication to be considered. It is crucial to understand that each person’s experience with end-stage ALS can be unique, and the specific symptoms and progression may vary.

Hospice care plays a vital role in supporting individuals with end-stage ALS and their families. Hospice teams are experienced in managing the complex symptoms associated with ALS, aiming to enhance quality of life and provide comfort. They work closely with patients, caregivers, and healthcare providers to address the physical, emotional, and psychosocial needs of the individual. Hospice care provides specialized assistance in pain and symptom management, ensuring that patients receive optimal relief from discomfort, including assistance with respiratory support and managing respiratory distress. Moreover, hospice offers counseling and emotional support to help individuals and their families navigate the emotional challenges that arise during this stage. The interdisciplinary team of healthcare professionals, including doctors, nurses, social workers, and counselors, collaborate to provide holistic care, promote dignity, and offer compassionate support throughout the end-stage ALS journey.

Hospice Eligibility Guidelines for Individuals with ALS

We understand that navigating the complexities of hospice care can be overwhelming, especially when dealing with ALS. This page aims to provide you with a comprehensive guide to the eligibility guidelines for hospice care specifically designed for individuals facing Amyotrophic Lateral Sclerosis.

Disease Specific Guidelines

Patients who meet the following criteria will be deemed to be in the terminal stage of ALS, with a life expectancy of six months or less if the illness runs its course. Generally speaking, patients with ALS are considered in the terminal stage when rapid disease progression is realized within a 12-month period. For purposes of determining eligibility rapid disease progression of ALS will include all of the following occurring within 12 months prior to initial hospice certification:

  1. Progression of dependence from independent ambulation (walking/moving) to wheelchair status to bed bound status
  2. Progression from a normal oral diet to pureed diet
  3. Progression from normal speech to garbled or unintelligible speech
  4. Progression from independence in all or most activities of daily living (ADLs) to needing assistance in all or most ADLs

 The patient should meet criteria 1, 2, OR 3 below.

  1. Critically impaired breathing capacity demonstrated by all of the below:
    1. Dyspnea (shortness of breath or difficulty breathing)
    2. Vital capacity less than 30 percent of normal (if available)
    3. Patient declines mechanical ventilation (ventilator)
  2. Critical nutritional impairment with a desire to not pursue artificial feeding modalities demonstrated by:
    1. Oral intake of nutrition and hydration insufficient to sustain life
    2. Dehydration
    3. Weight loss
  1. Patients demonstrating rapid progression of ALS along with life-threatening complications in the 12 months prior to initial hospice certification as below:
    1. Upper urinary tract infection (e.g. pyelonephritis)
    2. Stage 3 or 4 decubitus ulcer(s)
    3. Sepsis
    4. Recurrent aspiration pneumonia
    5. Recurrent fever despite treatment with antibiotics

Non-Disease Specific Guidelines

  1. Physiologic impairment of functional status demonstrated by a score < 70% using either:
    1. Karnofsky Performance Status (KPS)
    2. Palliative Performance Score (PPS)
  2. Dependence on assistance for two or more of the following activities of daily living (ADLs):
    1. Feeding
    2. Bathing
    3. Dressing
    4. Toileting
    5. Ambulation (walking/moving)
    6. Transfer


Although not the primary hospice diagnosis, the presence of certain co-morbidities should be considered in determining hospice eligibility, as the severity of these conditions is likely to contribute to a life expectancy of six months or less. These co-morbidities may include:

  • Chronic obstructive pulmonary disease
  • Congestive heart failure
  • Ischemic heart disease
  • Dementia
  • Renal failure
  • Diabetes mellitus
  • Liver disease
  • Acquired immune deficiency syndrome (AIDS)
  • Neurologic disease (CVA, ALS, MS, Parkinson’s)
  • Neoplasia

Disclaimer: Please note that the information provided on this page is intended for general guidance purposes only and should not replace professional medical advice. Each individual’s situation is unique, and eligibility for hospice care should be assessed by qualified healthcare professionals.


Benefits of Hospice Care for Individuals with ALS:

Hospice care offers numerous benefits tailored to the specific needs of individuals with ALS. Some of these benefits include:

1. Pain and Symptom Management: Hospice care focuses on alleviating pain and managing distressing symptoms associated with Amyotrophic Lateral Sclerosis.

For those with ALS conditions this can include managing symptoms commonly experienced which may include:

  • Pain
  • Muscle weakness and easy fatigue
  • Difficulty breathing
  • Muscle loss
  • Increased spasticity
  • Difficulty speaking
  • Difficulty swallowing
  • Weight loss
  • Decreased nutrition and hydration
  • Loss of motor control
  • Cognitive decline
  • Trouble Sleeping

The interdisciplinary team, including physicians, nurses, respiratory therapists, social workers, and chaplains, work together to develop a comprehensive plan that addresses the unique needs of each patient.

2. Medication and Equipment Support: Hospice provides medications, oxygen, and other necessary equipment (mobility aides, hospital bed, etc.) related to managing the symptoms that may arise with ALS. This ensures that patients have access to the resources they need to maintain comfort and improve their quality of life. All medications and durable medical equipment related to the terminal condition are covered under the hospice benefit.

3. Emotional and Psychosocial Support: Hospice care extends support not only to patients but also to their families and caregivers. Helping a loved one with ALS can be challenging. Social workers and counselors are available to provide emotional support, counseling, and resources to cope with the challenges that arise during this difficult time. The nursing team is available to assist in educating and guiding you through providing the best care to your loved one with ALS.

4. Skilled Nursing Care: Hospice care includes skilled nursing services provided by specially-trained hospice nurses who have expertise in managing the complexities of ALS. These skilled nurses assess and monitor the patient’s condition, provide anticipatory guidance based on disease progression, educate the patient and caregivers, manage medications, provide wound care if needed, and collaborate with other healthcare professionals to ensure comprehensive care.

5. Assistance with Activities of Daily Living (ADLs): Nurse aides, also known as certified nursing assistants (CNAs), are an integral part of the hospice team. They provide hands-on assistance with activities of daily living (ADLs), such as bathing, dressing, grooming, and toileting. For individuals with ALS who may experience loss of motor control, severe muscle weakness, difficulty swallowing, cognitive decline, and more due to progression of their condition, nurse aides help maintain personal hygiene, promote comfort, and preserve dignity.

6. 24/7 Access to Care: Hospice care offers round-the-clock access to the hospice team, providing peace of mind for patients and their families. This availability ensures that assistance is available whenever it is needed, even outside regular office hours.

7. Spiritual and Bereavement Support: Hospice care acknowledges the importance of spiritual and emotional well-being during end-of-life care. Chaplains or spiritual counselors are available to provide spiritual support, and bereavement services are offered to help families cope with grief and loss after the passing of a loved one.

8. Self-guidance: An individual is allowed to receive care in their preferred setting and have input on their care allowing for an increased sense of comfort.

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Not sure if you or a loved one are eligible to receive hospice care?

Contact the Honor Hospice team for an evaluation to determine if hospice is an appropriate care option.

If you have any questions regarding hospice eligibility guidelines for individuals with ALS, please feel free to contact us. Our compassionate team at Honor Hospice is dedicated to providing information, support, and personalized care during this challenging time.

Take the first step towards compassionate care and learn how hospice can make a difference in your life or the life of your loved one.