Real-World Challenges in the Trach-Dependent Child
Variations in how ventilator/tracheostomy-dependent children are managed put these patients at risk. But the problem isn’t always a lack of agreement in published consensus documents; it’s often the vagaries of real-world management, according to Julie Wei, MD, MMM, director, division of otolaryngology and the inaugural holder of the Dr. Alfred J. Magoline Endowed Chair in Otolaryngology at Akron Children’s in Ohio.
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February 2025“Family caregivers are not reading consensus documents on this; they’re not traveling to national conferences on tracheotomy care,” Dr. Wei said. “So, it’s up to you as their pediatric ENT physician to coordinate that care, based on your clinical experience managing these vulnerable patients.”
One of the first steps, Dr. Wei said, is to know the real-world variables that can trip up that care. How often to change the tracheostomy is a good example. “If you understand how biofilms work, with billions of bacteria living on this indwelling foreign body that is interacting with the child’s mucus membrane, and there is a fever, a nasty color, and secretions, the child may have bacterial tracheitis, and a family caregiver should change the tracheostomy tube every day,” she said. “But has your team trained them to recognize those signs and symptoms and remove and change the tube effectively?”
Durable medical equipment (DME) companies can be another variable that can thwart even the most proactive care plans. “Don’t assume that just because you’ve written an order for a fresh trach tube to be sent to a patient’s house once a month, that actually is going to happen,” she said. In her years caring for these patients across multiple practice sites, Dr. Wei has gotten many calls from frustrated parents that the DME orders for tubes, cleaning materials, suction devices, and other essential equipment were thwarted by insurance delays or denials, logistical breakdowns, and other issues.
COVID-19 brought similar challenges into stark relief, recalled Dr. Wei, who at the time of the pandemic was the president of the American Society of Pediatric Otolaryngology (ASPO). When massive supply chain shortages started to disrupt ENT practice, she and colleagues at the American Academy of Otolaryngology-Head and Neck Surgery (AAOHNS) worked to solve or at least mitigate the logjam. The two societies formed a subcommittee of ENT physicians who examined factors that were contributing to supply breakdowns, as well as those that were exacerbating them.
In the case of tracheostomy care, one of the main factors was the economics of the DME industry. Medical supply companies, like most commercial entities, are focused on margins, Dr. Wei said. As a result, some manufacturer guidelines noted never to reuse tracheostomy tubes, and instead throw them away every two weeks or monthly. “Realistically, I never told parents to do that,” she said. “Why would you? Here is a child dependent on a reliable supply of tubes and related equipment, not just for quality of life but for survival, in some cases. We can’t just keep throwing stuff away.”
Armed with that realization, the ASPO–AAOHNS subcommittee worked with the U.S. Food and Drug Administration (FDA) to create an addendum that has both groups’ stamp of support, stating that it is okay to reuse tubes. “This was a big deal,” Dr. Wei said. “The fact that the FDA looked to pediatric ENT physicians for guidance on this says a lot about the ability and dedication of our subspecialty to care for these children.”
That dedication manifests in several other areas. For example, Dr. Wei’s team has developed a standardized checklist that they review to help decide when it is safe for a trach-dependent patient to be sent home or to a facility outside of Akron Children’s. The team also makes sure that two family members are trained in tracheostomy supportive care if the patients are going to live at home.
The other component Dr. Wei underscored is her team’s willingness to provide in-depth education, training, and other support to families, in sessions that often approach an hour. The reimbursement for those efforts is not commensurable with the time spent, she stressed. “I’d be better off focusing on procedures or other higher-paying activities, but that is not what motivates my ENT pediatric practice,” she said.
All aspects of that training, as well as the checklists Akron Children’s uses, are aimed at standardizing milestones the hospital can use to determine when it’s safe to send a trach-dependent patient home. “That is our responsibility as pediatric ENT leaders,” she said. “It’s got to be standardized across all key team members, because otherwise, you’d have patients staying in the hospital for varying amounts of time and for varying reasons. That’s not sustainable.”