Parental Conflict, Regret, and Short-term Impact on Quality of Life in Tracheostomy Decision-Making.

OBJECTIVES: The prevalence of tracheostomy-dependence in critically ill children is increasing in the United States. We do not know the impact of this decision on parental outcomes. We aimed to determine the prevalence of decisional conflict and regret and explore the impact on quality of life among parents considering tracheostomy placement for their child. SUBJECTS: Parents facing tracheostomy decision for their child. DESIGN: Prospective, mixed-methods longitudinal study. SETTING: PICU, cardiac ICU, and neonatal ICU of a single quaternary medical center. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Parents completed a decisional conflict survey at the time of tracheostomy decision and decisional regret and quality of life surveys at 2 weeks and 3 months after the decision regarding tracheostomy placement was made. We enrolled 39 parents, of which 25 completed surveys at all three time points. Thirty-five of 39 (89.7%) reported at least some decisional conflict, most commonly from feeling uninformed and pressured to make a decision. At 2 weeks, 13 of 25 parents (52%) reported regret, which increased to 18 of 25 participants (72%) at 3 months. Regret stemmed from feeling uninformed, ill-chosen timing of placement, and perceptions of inadequate medical care. At 2 weeks, the quality of life score was in the mid-range, 78.8 (SD 13.8) and decreased to 75.5 (SD 14.2) at 3 months. Quality of life was impacted by the overwhelming medical care and complexity of caring for a child with a tracheostomy, financial burden, and effect on parent's psychosocial health. CONCLUSIONS: The decision to pursue tracheostomy among parents of critically ill children is fraught with conflict with worsening regret and quality of life over time. Strategies to reduce contributing factors may improve parental outcomes after this life-changing decision.

Discussing Benefits and Risks of Tracheostomy: What Physicians Actually Say.

OBJECTIVES: When contemplating tracheostomy placement in a pediatric patient, a family-physician conference is often the setting for the disclosure of risks and benefits of the procedure. Our objective was to compare benefits and risks of tracheostomy presented during family-physician conferences to an expert panel's recommendations for what should be presented. DESIGN: We conducted a retrospective review of 19 transcripts of audio-recorded family-physician conferences regarding tracheostomy placement in children. A multicenter, multidisciplinary expert panel of clinicians was surveyed to generate a list of recommended benefits and risks for comparison. Primary analysis of statements by clinicians was qualitative. SETTING: Single-center PICU of a tertiary medical center. SUBJECTS: Family members who participated in family-physician conferences regarding tracheostomy placement for a critically ill child from April 2012 to August 2014. MEASUREMENTS AND MAIN RESULTS: We identified 300 physician statements describing benefits and risks of tracheostomy. Physicians were more likely to discuss benefits than risks (72% vs 28%). Three broad categories of benefits were identified: 1) tracheostomy would limit the impact of being in the PICU (46%); 2) perceived obstacles of tracheostomy can be overcome (34%); and 3) tracheostomy optimizes respiratory health (20%). Risks fell into two categories: tracheostomy involves a big commitment (71%), and it has complications (29%). The expert panel's recommendations were similar to risks and benefits discussed during family conferences; however, they suggested physicians present an equal balance of discussion of risks and benefits. CONCLUSIONS: When discussing tracheostomy placement, physicians emphasized benefits that are shared by physicians and families while minimizing the risks. The expert panel recommended a balanced approach by equally weighing risks and benefits. To facilitate educated decision making, physicians should present a more extensive range of risks and benefits to families making this critical decision.