Adults living with cerebral palsy cannot die from cerebral palsy, yet the condition is commonly listed as an underlying cause of death on records for adults with cerebral palsy. Research from the University of Michigan Health System suggests that mislabeling the cause of death for patients with cerebral palsy can set back appropriate care for individuals with cerebral palsy.
When there is no primary cause and no autopsy performed, cerebral palsy is commonly written as the underlying cause of death. Known as diagnostic overshadowing, the incorrect listing not only does a disservice to the population of individuals living with the condition, but it continues a false narrative that patients can die from the condition alone.
In the research study “Underlying Causes of Death among Adults with Cerebral Palsy” published in the Journal of Clinical Medicine, researchers found that over 25,000 adult deaths in the United States between 1999 and 2019 had listed cerebral palsy as the underlying cause of death. Many of them listed respiratory illness as the secondary cause.
Respiratory illness is a common cause of death for patients with cerebral palsy since they are prone to pneumonia, respiratory failure, and aspiration. Other common causes can include cardiovascular issues and organ failures.
Ideally, the primary cause of death listed would be the illness or condition the individual had when they died if such information is available. Then, cerebral palsy would be listed as a secondary cause or noted in the record. This method would give researchers and health care providers a better base to start understanding how different conditions and illnesses interact with cerebral palsy across a patient’s lifespan.
This information can then be used in a preventative capacity or to treat patients living with cerebral palsy that may experience these illnesses and conditions in the future. Not properly listing the cause of death leads to a lack of understanding about the condition since it is unknown what the individual truly died of.
