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
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
- 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
- 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.
the impact of pain on insomnia, depression and quality of life at the end
- Develop pain protocols specific to patients with ALS.