Healthcare Providers’ Roles in Decision Making About Tracheostomy for Children with Medical Complexity (S768)

Abstract

•Identify the roles of physicians and non-physician clinicians in the decision-making process about tracheostomy for children with medical complexity.•Identify barriers faced by healthcare providers when guiding caregivers in decision making about tracheostomy for children with medical complexity.•Identify potential solutions to improve the tracheostomy decision-making process for children with medical complexity. Children with medical complexity (CMC) receive life-sustaining treatments (LST) for survival. Guiding caregivers about LST is an important aspect of pediatric palliative care. Describe healthcare providers’ roles in the tracheostomy decision-making process for CMC. This qualitative study was conducted in a tertiary care children’s hospital in North Carolina between February and October 2015. Five focus groups of 33 hospital-based healthcare providers that included hospitalists, pediatric intensivists, neonatologists, pulmonologists, otorhinolaryngologists, nurses, social workers, care coordinator, and respiratory, speech and physical therapist were conducted. Focus groups were audio-recorded and transcribed verbatim. We used ATLAS.ti software to code and manage qualitative data. Recurrent themes were identified. Theme 1. Physicians considered many child-level factors when recommending tracheostomy: underlying condition, survival, risk of recurrent hospitalizations, and neurological impairment. Recommending tracheostomy for CMC with limited survival, perceived poor functioning and quality of life, and progressive conditions was morally and ethically difficult for clinicians. Theme 2. Clinicians considered caregivers’ ability to provide complex care at home when recommending tracheostomy. Barriers to decision making were caregivers’ lack of understanding of the severity of child’s condition, benefits/ futility of tracheostomy, and the effect of tracheostomy on long-term care of CMC, and the influence of social media. Theme 3. Physician variability in tracheostomy recommendation was an impediment to guiding caregivers. Physicians attributed this variability to clinical uncertainty and lack of outcomes data about the effect of tracheostomy. Theme 4. Palliative care services were helpful to clinicians in the decision-making process. Bedside nurses, had information about and trusting relationship with caregivers, that were important. Physicians’ engagement of non-physician clinicians in daily rounds, and provider and family meetings were potential strategies to improve the decision-making process. Healthcare providers play an important role in guiding caregivers in the decision-making process about tracheostomy for CMC.