The first time I saw Jessa, she lay crumpled in the ICU bed, paralyzed, expressionless and unable to speak. A military veteran, she had fought in Desert Storm, but she now was facing a deadlier and more inexorable foe: amyotrophic lateral sclerosis (ALS), aka Lou Gehrig’s disease.
This disease causes progressive loss of muscle control, and Jessa was unable to speak, eat or breathe on her own. Her only means of communicating was through small facial movements–opening and closing her eyes or mouth, raising her eyebrows.
A dozen people made up her ICU team: three interns, three residents, a pharmacist, a nurse, a respiratory therapist, a social worker, a hospital chaplain and myself–the lead physician, or intensivist.
My intensivist mind, trained to seek solutions, skitters down a patient’s problem list in search of answers. And Jessa’s list was extensive: she needed a feeding tube, IV fluids, diapers and a special bed to prevent bed sores, antibiotics for a newly contracted pneumonia, intermittent sedation to ease anxiety and narcotics for chronic back pain.
But now, listening to the respirator pumping air into Jessa’s lungs and felt her intense cobalt gaze on me, I saw one thing clearly: any concerns about antibiotics or nutrition took second place to a larger question.
“What do we know of Jessa’s wishes about staying on a ventilator, now and in the coming weeks and months?” I asked the team when we stepped outside the room to confer.
“Her chart says that she wanted to be placed on a ventilator when she couldn’t breathe on her own,” said one resident.
Read the rest of E. Wesley Ely’s wonderful story from Pulse here.