Study Compares Quality vs. Quantity of Life in Amyotrophic Lateral Sclerosis

Tracheostomies in ALS

A tracheostomy is essentially an invasive procedure which helps patients breathe. It also removes secretions from their lungs. Doctors cut an opening into the patient’s neck and through their windpipe. A tube is then inserted into this opening, allowing the patient to breathe. It is utilized when noninvasive procedures are not adequate and the patient must be on a ventilator for an extended period of time. It is also utilized in some emergency situations when necessary.

2% of Amyotrophic lateral sclerosis (ALS) patients undergo a tracheostomy in the United States. ALS is a neurodegenerative condition which is progressive. The disease destroys nerve cells and at the end of life, patients become completely paralyzed. The tracheostomy procedure can extend patients lifespan, but it’s highly debated whether or not the invasive procedure is worth undergoing.

Some believe that when the only option left is a tracheostomy, palliative care is a more humane option. But ultimately, it is up to the patient and how they value quality of life versus quantity of life. Many contend that the decision to receive a tracheostomy must be balanced between the patient’s perceptions and their physician’s medical advice. However, it is still a very complicated issue.

A recent study conducted by Michael Cartwright at Wake Forest Baptist Medical Center explored whether or not extending life was secondary to receiving a tracheostomy. Specifically, Cartwright evaluated the differences between African American ALS patients who tend to live longer (because they are more likely to have the tracheostomy procedure) and white non-hispanics who have shorter lifespans and also are less likely to endure the procedure.

The Study

This study included 49 African American ALS patients and 137 white ALS patients. These individuals were matched by site of onset, gender, and age.

Researchers in this study found that overall African Americans lived longer with the disease. Additionally, three times as many African American patients as white patients received a tracheostomy. The reason why more African Americans received the procedure was unclear. However ultimately, the study found that living longer may be secondary to receiving a tracheostomy.

The study author explains that its important for patients to evaluate what is the best option for them. They need to consider their personal quality of life in order to determine which interventions are the best decision for them as an individual.

The results from this study were published in Neurology.

You can read more about this study and this complicated issue here.

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