Philadelphia lawyer Eric Swan was visiting Chicago in April of last year when he had a brain stem stroke, something no one plans for, and certainly not when so far away. His care proved expensive, lengthy, and complicated.
"Along the way there would be gaps in the care Eric received, gaps so large they were more like chasms," his wife, Beth Ann, writes in the distinguished policy journal Health Affairs.
"The system, it's just broken," she tells me. How was this news to Swan, with 30 years in health care, professor and now dean of the Jefferson School of Nursing? "I guess I didn't have a full appreciation of how broken the system really was."
She discovered the hard way. Eric, then 53, couldn't walk or swallow, and suffered from a host of neurological issues. Among her challenges was getting him transferred from a community hospital to an academic health center in Chicago. After 10 days of hospitalization, she had to acquire copies of his records and get him transported from Chicago to an acute rehab hospital in Philadelphia. All proved challenging, and that's with Swan's being able to phone Thomas Jefferson University's president for assistance. The couple have two daughters, one in college and the other in middle school when Eric had the stroke.
"As his wife, I wanted to cry," she writes. "Instead I put on a brave face and became his care manager." Swan supervised Eric's care from six or more primary doctors and specialists, and then supervised the home phase, the 29 pages of prescription information. Even with a doctorate in nursing and plenty of experience in health care, she found herself overwhelmed.
"The patient and his family truly have to be at the center of the care," she says. "Clearly, in our situation, that wasn't the case." As with so many patients.
The situation worsened once Eric left Jefferson's expert care, a situation common for many patients who have suffered strokes or require ongoing posthospital care. "After he was discharged, we were on our own," Swan says. She had to handle an erroneous $23,312 bill from the Chicago community hospital that resulted in a collection notice, plus all the myriad dealings with the insurance company.
So Swan knew, and yet she didn't know how bad the situation can get. "You can't prepare for this. You can't live your life preparing for it." She took notes, asking questions of every medical professional, writing everything down in a black marble copybook. She advises everyone to create a reference book.
Nineteen months later, Eric is walking and talking but easily fatigues. He requires help with balance and coordination; needs to be protective of his right eye, his left arm and left leg, where sensation is abnormal; and has trouble swallowing some foods.
Much more professional medical care and coordination are needed for patients like Eric Swan. After a patient leaves the hospital, Swan envisions "a team of registered nurses to coordinate care and manage transition. I don't know who is going to pay, but I know that it would lower the rate of rehospitalization, the rate of emergency room use," high rates hospitals work assiduously to avoid. "I would think the amount of money insurance companies pay for these events could be lowered and spent on coordinating care and managing transitions." A win for everyone.
Swan applied for a $2.3 million federal grant to create a model for transitional care, managed by a team of registered nurses. "This age group from 18 to 64 tends to fall through the cracks," she says. "My husband was a healthy, energetic, independent person and, in a split second, became chronically ill. Because of his age and health, the models in place wouldn't apply."
She'll find out about the grant early next year. Swan's a tireless advocate for reform, educating her nurses and students. She's optimistic that the Affordable Care Act's reform strategy will create better and more efficient care. "This is my passion. It's personal," she says. "Any family could potentially have a similar experience, and it needs to change."