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Hospice Clinical Appropriateness: End-Stage Amyotrophic Lateral Sclerosis (ALS)

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An increasing focus on palliative and end-of-life care has made a significant difference for individuals with ALS and their loved ones. With the assistance of hospice, patients in the final stages of the disease are at peace; their symptoms managed. Many can remain in the comfort of their homes. 

Hospice services for ALS are designed to support and supplement the efforts of the primary physician in relieving suffering, providing comfort, promoting dignity and facilitating closure for patients and their families.

Clinical Characteristics of Hospice-Appropriate ALS

Clinical characteristics of ALS make decisions regarding the timing of end-of-life care somewhat difficult. A limited prognosis is typically triggered by "rapid progression" of ALS, which is defined as the development of severe neurologic disability over a 12-month period.

ALS may be complicated by secondary and co-morbid conditions. Secondary conditions, such as dysphagia, pneumonia and pressure ulcers, are a direct result of the impairment of respiratory functions, swallowing, muscle power and muscle tone that are common in ALS. Co-morbid conditions, which often accompany the rapid progression of ALS, include chronic obstructive pulmonary disease (COPD), pyelonephritis or upper urinary tract infection, septicemia and fever after recurrent antibiotics.

Hospice Eligibility for ALS

Patients are eligible for hospice care when a physician makes a clinical determination that life expectancy is six months or less if the terminal disease runs its normal course. In end-stage ALS, two factors are critical in determining prognosis: ability to breathe and ability to swallow. 

In ALS, feeding tubes can be a normal part of treatment. G-tubes and ventilator support prolonged life expectancy. Hospice-appropriate patients are those who have chosen to forego supportive ventilation, artificial hydration and nutrition.

Hospice Admission Guidelines for Patients with End-Stage ALS

Patients are considered to be in the terminal stage of ALS if they meet the following criteria:

  • BOTH rapid progression of ALS and critically impaired ventilatory capacity or
  • BOTH rapid progression of ALS and critical nutritional impairment with a decision not to receive artificial feeding or
  • BOTH rapid progression of ALS and life-threatening complications such as:
    • Recurrent aspiration pneumonia
    • Decubitus ulcers, multiple, stage 3-4, particularly if infected
    • Upper urinary tract infection, e.g., pyelonephritis
    • Sepsis
    • Fever recurrent after antibiotics

VITAS provides these guidelines as a convenient tool. They do not take the place of a physician's professional judgment.

Hospice Plan of Care for End-Stage ALS

The hospice plan of care for ALS addresses the patient's physical and psychosocial well-being and seeks to manage a wide variety of ALS symptoms, including:

  • Shortness of breath; respiratory dysfunction
  • Pain resulting from stiff joints, muscle cramps, pressure on skin and joints caused by immobility
  • Skin care issues
  • Difficulty swallowing
  • Impaired hydration and nutrition
  • Difficulty communicating
  • Depression or anxiety
  • Financial challenges

VITAS provides these guidelines as a convenient tool. They do not take the place of a physician's professional judgment.

Download a PDF of these guidelines:

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