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
- 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.
- Define the incidence and causes of insomnia in ALS, and study the
relationship of insomnia to quality of life at the end of life.
(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.
Educate health care providers about not withholding sedative-hypnotics
in patients with