Less opioid use for ALS patients on invasive ventilation, study finds

Choosing such ventilatory support may help manage breathing symptoms

Margarida Maia, PhD avatar

by Margarida Maia, PhD |

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People with amyotrophic lateral sclerosis (ALS) who choose invasive ventilation to help with breathing less frequently require opioids to manage their symptoms compared with ALS patients who remain on noninvasive ventilation or have no ventilatory support at all, according to a new study by researchers in Japan.

Opioid use also was found to occur earlier in the disease course among individuals on noninvasive ventilation or without ventilatory support.

These findings show that, while opioids like morphine are sometimes used in ALS to ease pain and distress caused by difficulty breathing, they may be less necessary for patients undergoing tracheostomy and invasive ventilation, known as TIV, to help with breathing. In TIV, a tube is inserted through an opening into the windpipe and connected to a ventilator.

“The choice of ventilatory support significantly influences opioid use in patients with ALS. Patients who opted against TIV required opioids to relieve distress more commonly than those who chose TIV,” the researchers wrote.

According to the team, “the observed differences in opioid use may highlight clinically important aspects of respiratory management and palliative [supportive] care in patients with ALS.”

The study, “Patients’ choices regarding ventilatory support affect opioid use in amyotrophic lateral sclerosis,” was published in the journal Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration.

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Opioid use found for over half of patients on noninvasive ventilation

ALS is a progressive disease that causes muscles in the chest to weaken, making breathing difficult. While noninvasive ventilation, known as NIV, can make breathing easier, it becomes less effective as the disease progresses. For example, bulbar weakness, which affects the muscles around the mouth and throat, can limit how well NIV works.

By using an opening into the windpipe, TIV bypasses problems caused by bulbar weakness, often making it a better option for patients who have bulbar-onset ALS. That form of the disease first affects muscles in the face and throat, leading to early difficulty in swallowing and speaking.

Still, patients on both noninvasive and invasive ventilation require respiratory palliative care to maintain their quality of life. Such care typically involves airway clearance, strategies to prevent respiratory infections, and treatment with appropriate medications,  However, it’s not known if the use of opioids to ease respiratory distress is impacted by the choice of ventilatory support.

To learn more, a team of researchers examined data from 399 patients who were admitted to the Tokyo Metropolitan Neurological Hospital between January 2010 and December 2022 and followed until they underwent a tracheostomy, or until their death.

In total, 130 patients — 32.6% or about one-third — used opioids, either morphine hydrochloride hydrate or morphine sulfate hydrate. These drugs were most often prescribed by clinicians or members of the palliative care team to treat symptoms such as respiratory distress, pain, restlessness, thirst, a burning sensation, choking, and intolerable fatigue.

This study demonstrates that ventilatory support choices influence opioid use in patients with ALS. … Clinicians should understand the distinct clinical courses of [noninvasive ventilation] and [invasive ventilation] users and provide appropriate palliative care, including opioids

For their analysis, the researchers divided the patients into four groups based on the type of ventilatory support given. The four were: those with no ventilation, those who only received NIV, patients who initially used NIV and then switched to TIV, and those who underwent TIV without using NIV first.

The study’s results showed that more than half of patients on NIV (57.5%) used opioids, a percentage much higher than in any of the other groups. In particular, opioids were used by 34.4% of those without ventilatory support, as compared to 8.2% of patients on TIV after switching from NIV, and 1.7% of those who started on TIV.

According to these data, more than 90% of people in the TIV groups were not using opioids.

Patients who did not choose TIV also started using opioids significantly earlier compared with those in the two TIV groups.

“This study demonstrates that ventilatory support choices influence opioid use in patients with ALS,” the researchers wrote, noting that “opioids may be less necessary for patients opting for TIV, as their respiratory distress is alleviated by TIV itself.”

The researchers suggested that healthcare providers take into account patients’ ventilation choices in choosing treatment for their symptoms.

“Clinicians should understand the distinct clinical courses of NIV and TIV users and provide appropriate palliative care, including opioids, when patients’ distress warrants intervention,” the team wrote.