Ventilator Adaptations Crucial for ALS Patients During COVID-19, Scientists Say

For people with amyotrophic lateral sclerosis (ALS) currently on non-invasive ventilation, modifications to existing equipment may help to minimize risk of an infection for both them and their caregivers during the COVID-19 pandemic.

The equipment adaptations were discussed in a letter to the editor, “Modification of non-invasive ventilation for the advanced amyotrophic lateral sclerosis patient during the COVID-19 pandemic — do it now,” published in the Journal of the Neurological Sciences.

Ventilation involves the use of a machine to assist a person in breathing; this treatment is necessary for some advanced ALS patients. Because these individuals, by definition, have respiratory difficulties, they are at increased risk of serious complications if they contract COVID-19.

The virus that causes COVID-19, SARS-CoV-2, spreads via tiny droplets of liquid that are released when a person breathes. As such, “When treating ALS patients in the home environment, the potential for generating infectious aerosols should be a primary concern,” the scientists, all associated with ALS and pulmonary centers across the U.S., wrote.

They focused on minimizing infection risk in the context of non-invasive ventilation, which involves use of a face mask (as opposed to invasive ventilation, which involves a tube placed directly into the windpipe).

“For the advanced ALS patient dependent on a home non-invasive ventilator, equipment modifications may reduce virus transmission and the infection of caregivers,” the scientists wrote.

They pointed to recent guidelines from the American College of Chest Physicians (ACCP), which suggest some such modifications. Conceptually, the modifications involve making the ventilation system more a closed system to minimize the exchange air that the patient breathes with surrounding air. This involves adding anti-viral filters to control viral spread, and changing to a full-face, non-vented mask.

These equipment adaptations should be done by a respiratory therapist with appropriate training. The therapist should ensure that the modifications are adjusted to the patient’s comfort, and instruct patients and caregivers on their appropriate use.

The authors acknowledged that implementing such modifications, while theoretically the best option, may not be realistic in all cases, at least for now. “These modifications during a pandemic, when medical resources become low, may not be easily feasible due to a lack of personnel or medical and protective equipment,” they wrote. “As equipment becomes more easily available, the recommended modifications may be fully implemented.”

Even with all possible precautions, a person with severe ALS can still become infected with COVID-19.

Should this happen, the scientists said hospitalization may be necessary, but stressed these decisions need to be made in concert with the patient, as well as their loved ones and caregivers. For instance, some hospitals have no-visitor policies for infected people, which may not be in line with the wishes of patients, particularly if they are in a stage of care aimed at providing comfort toward the end of life.

“In such a situation,” they wrote, “it is important to have input from palliative or hospice care to provide the appropriate end-of-life treatment options.”

But the recommended modifications, which can minimize the risk of infection to all involved with ALS and its care, should be made as soon as feasibly possible.

“Ventilator equipment modification should be pursued in all ALS patients supported by non-invasive ventilation,” the scientists concluded. “Successful implementation is essential in resuming in-person care and will shape the face-to-face ALS clinics of the future.”