Stone Throwing in the Glass House.

Abstract

A small girl with a unique genetic syndrome lies in bed since birth. Her brain does not work. She is in a persistent vegetative state. Recurrent seizures punctuate her intractable epilepsy. She shows no meaningful interaction. Her breathing is insufficient. Upper airway obstruction, repeated aspiration events, chronic lung disease, and scoliosis make her struggle to breathe. Her parents never wanted her to suffer. Two years ago, they agreed to a Physician Orders for Life-Sustaining Treatment (POLST). Their daughter would not undergo resuscitation. Death did not come, however. With meticulous medical care, her body grew. Her breathing worsened. Offered either palliation or a tracheostomy tube, her parents chose “trach.” With easier breathing, the girl expended fewer calories. She continued gastrostomy tube feeds and gained 10 pounds in 3 months. Now she is rehospitalized with respiratory distress. Her weight rises another 2 pounds. We put off calorie reduction for the outpatient setting. For the first time, we discharge the family home with a mechanical ventilator. Our collective health-care efforts have set up a protracted course whose likely end will come in overwhelming sepsis or ARDS, rather than allowing natural death with palliative care. How many ethical issues were raised by this case? I count more than 40 (Table ​(Table11).