Promoting Excellence : ALS Report to the Field : Insomnia


аи Executive Summary
аиаReport to the Field

Identification of Existing Resources

For the patient and family, insomnia is a disconcerting symptom, and its cause varies. Some patients experience shortness of breath, and others are anxious. One recent study suggests that insomnia is prevalent and can be severe in the last month of life (Ganzini et al., 2002).

Identification of Existing Gaps

Both in clinical practice and in the medical literature, there is inadequate evidence on the diagnosis, incidence, prevalence and management of insomnia in patients with end-stage ALS. Similarly, there is neither evidence on the safety and efficacy of medical interventions for insomnia, nor on factors other than respiratory insufficiency that may contribute to insomnia.

Common pharmacological intervention for insomnia includes the use of analgesics, hypnotics or sedatives, which could possibly hasten death. The use of such pharmacological therapies needs evaluation, and the impact of such pharmacotherapies on mortality needs to be assessed.

Recommendations to the Field

Practice Recommendation

  • Assess insomnia in patients with ALS during each health care visit and include symptom surveillance in home care. The origin of insomnia should be precisely determined and therapy directed at the underlying cause (Miller et al., 1999).
  • Inquire about signs and symptoms of insomnia, particularly during the end of life.
  • Use appropriate sedative-hypnotics in patients with insomnia due to respiratory insufficiency.

Research Recommendations

  • Define the incidence and causes of insomnia in ALS, and study the relationship of insomnia to quality of life at the end of life.
  • Investigate (prospectively) the optimum management of insomnia in ALS patients at the end of life.
  • Develop evidenced-based algorithms for management of insomnia, particularly in patients who choose not to use NIPPV.

Policy Recommendation

Educate health care providers about not withholding sedative-hypnotics in patients with respiratory insufficiency.

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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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