Deciding whether a breathing tube is best for a child

(Press-News.org) NEW YORK, NY – Oct. 22, 2025 – The emotional strain on parents and other caregivers faced with deciding whether a tracheotomy is the best treatment for their child is hard to measure. The latest clinical practice guideline from the American Thoracic Society aims to give clinicians and parents/caregivers a way forward so they can navigate difficult decisions to ensure better outcomes for young patients. The guideline was published early online today, Wednesday, Oct. 22, in the American Journal of Respiratory and Critical Care Medicine.

A tracheostomy is a tube that is surgically placed through an incision in the front of the neck into the windpipe or trachea. This “trach tube” can help the patient breathe more easily.

“A tracheostomy can save a life, lengthen a life, and improve the quality of life. However, this is not always true,” said Christopher Baker, MD, guideline co-chair and director of the Ventilator Care Program at Children’s Hospital Colorado. “In some cases, a tracheostomy may not help a patient or may even cause them to suffer more. Whether or not to get a tracheostomy can be a difficult decision for family caregivers to make for their child. We wrote these guidelines to help clinicians and family caregivers provide the best care possible, but ultimately it is up to each provider-caregiver partnership to decide what is best.”

Crystal Costante, one of the family members on the panel shared: “The new guidance for clinicians gives me a sense of hope and relief as a parent of a ventilator-dependent child with a tracheostomy. It shows that health care providers are recognizing the importance of including families as true partners in care. Clear and consistent guidance means that clinicians across different settings will have a shared understanding of what high quality, family-centered tracheostomy care looks like. For caregivers like me, this helps build trust, improves communication, and makes it easier to take part in shared decision making. It also brings comfort knowing that our knowledge and experience as parents are valued as part of the care team, which ultimately leads to better safety and quality of life for our children.”

The new guideline was developed as a key resource for pediatric pulmonologists, critical care clinicians, rehabilitation specialists and other providers who care for children with tracheostomies.

Dr. Baker and Reshma Amin, MD – director, Sleep Medicine and Long-Term Ventilation Programs, The Hospital for Sick Children – co-led an expert panel comprised of health professionals as well as parents/caregivers, who were tasked with answering six questions. Using the thorough, evidence-based Grading of Recommendations, Assessment, Development and Evaluation (GRADE) framework, the expert panel made recommendations, three of which are outlined below. For the complete list of recommendations, please read the guideline on our website:

Recommendation 1. We recommend applying ethical principles (beneficence, nonmaleficence, autonomy, and justice) to guide shared decision-making about tracheostomy placement (strong recommendation, very low certainty of evidence).

Recommendation 3. We recommend that an awake and alert trained caregiver always be present with children at risk of immediate decompensation due to tracheostomy-related complications (strong recommendation, very low certainty of evidence).

Recommendation 5b. For children with tracheostomies, we recommend performing a complete airway evaluation prior to a decannulation attempt. Airway evaluation should include an assessment of a) nose and nasopharynx, b) oropharynx and oral cavity, c) supraglottis and larynx, and d) subglottis, trachea and bronchi (strong recommendation, low certainty of evidence).

While the ATS published an official statement on caring for children with a chronic tracheostomy in 1999, this new guidance marks the first time that the Society has published a clinical practice guideline on the subject. Guidelines offer more scientific and methodological rigor.

“Although we brought together a diverse group of experts from around the world, from big and small hospitals, and from different disciplines, we realize that some of our recommendations may be difficult to implement in settings with limited resources (such as rural areas or low/middle income countries), said Dr. Baker. “We are working on a follow-up study to examine how the new guidelines apply in these settings.”

The ATS has published more than 30 clinical practice guidelines since 2016 on various conditions, ranging from allergy and asthma to TB and other pulmonary infections. The Society also develops guideline implementation tools and derivatives.

 

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