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I’ve been watching some friends as they try to navigate the healthcare system as a result of a spinal cord injury and resultant quadriparesis. The patient is totally alert and talkative but completely unable to move and dependent on a ventilator to breathe. I’ve watched things happen during their medical journey that I once would have said were not possible in the American healthcare system. I hope one day the wife will have time to write about it – but for now the problem is simple: How can a paralyzed, ventilator dependent patient get from a hospital in Houston, Texas back home to Minnesota?

He’s got private insurance and Medicare but the air ambulance transfer was denied – possibly because of inaccurate or incomplete information provided by the hospital case manager. That’s only the most recent in a series of dropped balls that would make great slapstick comedy – if a life wasn’t at stake. For example, the hospital has a new and highly efficient system for ordering meals but it only works if the patient can answer the telephone in the room. Because this patient is paralyzed, he can’t use the phone in his room to order his meals. The wife would arrive after work and be told by nurses they were sorry but he’d “missed his chance” to order a meal… The wife started calling to order his food, but no one would take time to feed him and she would arrive to find both the lunch and dinner trays sitting cold in front of him. He was hungry but didn’t want to bother the nurses. Actually it was hard for him to bother the staff since his call button was carefully placed near his paralyzed hands. His colostomy bags were allowed to fill to breaking. Pulmonary fellows routinely changed the orders for his ventilator settings and then left without checking to see how he responded – this in an alert patient without access to a call button who can’t shout. When a medication error caused severe hypotension —  a nurse explained that the treatment was to prop him upright in bed. All the above happened in an intensive care unit.

More than one clinician along the way has suggested to the wife that she not try so hard to keep him alive because he’s paralyzed. The patient and his wife sense that the staff believe he’s just not worth the extra trouble to feed and care for, and certainly that he ought not to be so darn picky about his ventilator settings.

The wife says she can provide better care for him at home than he is getting in the hospital. At the very least, she will feed him regularly. I don’t know what else to say except, here’s the GoFundMe for his air ambulance transportation back home to Minnesota.