Amyotrophic Lateral Sclerosis:
Guidelines for End-Stage ALS 

LIFE LIMITING CONDITION AS EVIDENCED BY:

• Exam by a neurologist within 3 months of assessment for hospice is advised to assist with prognosis.
• Two factors determining prognosis:
  • Ability to breathe.
  • Ability to swallow.

AND/OR:

• Dyspnea at rest.
• Wheelchair or bedbound.
• Assistance with all ADLs.
• Sepsis.
• Barely intelligible speech.
• Rapid progression of ALS occurring within the 12 months preceding.
• Declines artificial ventilation (external ventilation used for comfort measures only)
• Critically impaired nutritional status occurring within the 12 months preceding
• Vital Capacity less than 30% of normal.
• Recurrent fever after antibiotic therapy.
• Recurring aspiration pneumonia.
• Upper urinary tract infections.
• Stage 3 or 4 decubitus ulcers.

GENERAL INDICATORS:

• Patient/family desires no further aggressive medical intervention including acute care hospitalization.
• Progressive symptoms despite medical intervention and evidence of decline medically documented such as:
  • Increased weakness or impairment in mobility.
  • Active co-morbidity accelerating the trajectory of the terminal illness.

HOW WE HELP — END-STAGE ALS:

• Assistance in respiratory insufficiency care including respiratory support management.
• Nutrition and hydration support as requested by patient.
• Help with speech and communication modalities as possible.
• Coping with depression and pseudobulbar affect.
• Aggressive pain management.
• Psychosocial support for patient and the family.
• Spiritual care and support for the patient and the family.