How Parents Feel After Tracheostomy Decision

A recent study (S Nageswaran et al. J Pediatr 2018; 203; 354-60) examined parents’ perceptions about their decision to proceed with a tracheostomy.  As a GI doctor, I am not directly involved in the discussions about tracheostomy; however, we interact closely with many complex patients whose families have reached this decision.  Many times I have wondered whether families regret this decision and whether a more palliative approach may have been appropriate in some children.

In this study with interviews from 56 caregivers of 41 children, their was very high satisfaction with the decision to proceed with a tracheostomy.  All children in this study had a tracheostomy for 5 years or less.

The parents reported the following reasons:

  • Extending the life of their children.  In fact, many parents reported there were no other options available to ensure their children’s survival; thus, many caregivers felt they did not have a choice other than a tracheostomy.
  • Being able to provide care at home
  • Improvement in respiratory symptoms
  • Improved quality of life
  • Physical and developmental health

Key finding: Among 38 interviews, 38 out of 41 explicitly expressed satisfaction with their decision to pursue a tracheostomy.  In none of the interviews did any caregiver express clear regrets about their decision.

At the same time, the parents acknowledged difficulties like mucus plugs, accidental decannulation, and difficulty of home care with a tracheostomy..