“I’ve been forced to spend a lot of money I don’t have out of pocket to try to obtain the things I can’t get from the DMEs,” she said. “It’s absolutely absurd that life-saving equipment is in short supply.”
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November 2022Making do with available supplies increases the risk of harm. Tubes—especially older ones that have developed microfractures—can develop bacterial biofilms, increasing the risk of infection. Mucus can build up, causing inflammation, and ill-fitting equipment can trigger coughing and interfere with communication.
Evans has already suffered numerous infections and is tremendously concerned about the “lifelong impact” of supply shortages. She’s currently working with a local agency to obtain a communication device in case she’s forced to switch to a bigger trach that will inhibit airflow to her vocal cords.
“None of this would be happening if I simply had access to ventilator supplies,” Evans said.
Dr. Bock said he’s recently seen “at least three patients who came in nine to 12 months or more after a hospital discharge without any plan for trach care or trach supply management.” He had to perform surgery on one woman to remove significant granulation around her tracheotomy and insert a new trach tube.
Nobody knows the extent to which patients and families are experiencing adverse consequences. Rebecca Brooks, RN, an advanced practice registered nurse/pediatric clinical nurse specialist with CHAMP (Children’s Health Airway Program) who works with Dr. Johnson, said, “We haven’t had anybody with complications,” as patients can contact the office or ventilator clinic for help.
McLelland, the California mom, suspects the true human cost of tracheostomy supply shortages will never be fully known. “No one’s tracking the infections, pneumonias, and deaths that come from routine reuse of medical equipment that’s supposed be disposable,” she said.
Jennifer Fink is a freelance medical writer based in Wisconsin.
How Otoloryngologists Can Help
There are several ways otolaryngologists can help their tracheostomy-dependent patients get the care they need:
- Offer resources and advice. Stay up to date on supply chain challenges, acknowledge patient frustrations, and help your patients navigate reality. “I tell patients, ‘If the intended equipment is not available, I can be a resource and suggest something different,’” said Ross Mayerhoff, MD, of Henry Ford Health in Detroit. Online communities are tremendously helpful, but physicians should encourage patients to seek professional guidance before using supplies recommended by a non-professional.
- Share information. Share information as needed with patients’ insurance companies and other providers. Otolaryngologists have expertise that well-meaning primary care physicians do not, and that expertise can help patients get necessary supplies. “It’s so important that ENTs—not lay people or primary care providers—document what we need,” said Crystal Evans, a ventilator-dependent adult.
- Create multidisciplinary teams to manage trach care. “It really does take a village to meet the needs of people with tracheostomies,” said Michael Brenner, MD, president of the Global Tracheostomy Collaborative. Ideally, patients will be followed by a multidisciplinary team that includes physicians, tracheostomy nurses, speech/language pathologists, respiratory therapists, medical assistants, and social workers, and the team will have strong connections with community DME providers.