Despite its intended use as a treatment of last resort, some patients can remain on ECMO for weeks or months. And some are awake, alert, and capable of medical decision-making. RD was one such patient.

Tinslee Lewis, a critically ill 1-year-old girl born with a rare heart defect and severe lung disease, has spent her entire life in the intensive care unit at Cook Children’s Hospital in Texas and undergone multiple surgeries in attempts to save her life. Tinslee’s care team has determined that she has no chance for any meaningful survival and that ongoing intensive care is harmful and causing her undue suffering. They recommend withdrawal of life-sustaining treatment, against the parent’s wishes. Tinslee’s fate is being debated in court.