Promoting Excellence : ALS Report to the Field : Pain


аи Executive Summary
аиаReport to the Field

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Identification of Existing Resources

There is widespread misperception that pain is not a significant problem at the end of life in ALS. This may originate from literature that emphasizes the diagnostic criteria, including absence of sensory findings. Thus, the health care provider may not address pain complaints. Also, patients may not have the ability to communicate the nature or origin of their pain. A current review of management of pain in ALS is summarized in Appendix C and in the Practice Parameter.

Identification of Existing Gaps

There are no standardized tools to measure severity of pain specifically in patients with ALS. Also, the impact of pain on the patient with ALS, especially for patients at the end of life, has not been studied. Many health care providers managing pain in patients with ALS may not be pain specialists and may not be aware of the WHO pain management guidelines (Appendix D). One of the most challenging tasks for health care providers is the appropriate use of opioid medications for patients in pain at the end of life. Many health care providers are uncomfortable with using high levels of opioids, and there are no specific protocols for medication use in this population of patients at the end of life.

Recommendations to the Field

Practice Recommendations

  • Follow established WHO guidelines for pain management, including liberal use of opioids and narcotic analgesics.
  • Utilize nonpharmacological interventions in the routine management of patients with pain, including range of motion exercises, frequent repositioning, therapeutic mattresses, relaxation and diversion.
  • Establish a method of quantitating symptom severity prior to the loss of verbal communication.

Research Recommendations

  • Develop ALS-specific pain protocols, and determine how to evaluate pain in anarthric patients.
  • Define specific pain syndromes in ALS, including the frequency and nature of pain and the severity of different syndromes.
  • Define the impact of pain on insomnia, depression and quality of life at the end of life.
  • Develop pain protocols specific to patients with ALS.

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Promoting Excellence in End-of-Life Care was a national program of the Robert Wood Johnson Foundation dedicated to long-term changes in health care institutions to substantially improve care for dying people and their families. Visit for more resources.

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