Objective: 

The aim of this study was to describe decisions about the escalation and withdrawal of treatment for patients on extracorporeal membrane oxygenation (ECMO).

Summary Background Data: 

Interventions premised on facilitating patient autonomy have proven problematic in guiding treatment decisions in intensive care units (ICUs). Calls have thus been made to better understand how decisions are made in critical care. ECMO is an important form of cardiac and respiratory support, but care on ECMO is characterized by prognostic uncertainty, varying time course, and high resource use. It remains unclear how decisions about treatment escalation and withdrawal should be made for patients on ECMO and what role families should play in these decisions.

Methods: 

We performed a focused ethnography in 2 cardiothoracic ICUs in 2 US academic hospitals. We conducted 380 hours of observation, 34 weekly interviews with families of 20 ECMO patients, and 13 interviews with unit clinicians from January to September 2018. Qualitative analysis used an iterative coding process.

Results: 

Following ECMO initiation, treatment was escalated as complications mounted until the patient either could be decannulated or interventional options were exhausted. Families were well-informed about treatment and prognosis but played minimal roles in shaping the trajectory of care.

Conclusions: 

Discussion between clinicians and families about prognosis and goals was frequent but did not occasion decision-making moments. This study helps explain why communication interventions intended to maintain patient autonomy through facilitating surrogate participation in decisions have had limited impact. A more comprehensive understanding of upstream factors that predispose courses of critical care is needed.