A nurse learns firsthand the pitfalls of post-hospital care when her husband suffers a stroke. (Brett Ryder/Heart Agency)

At 9:45 p.m. on Tuesday, April 26, 2011, the phone rang in our home in suburban Philadelphia. It was a colleague of my husband, Eric, who was on a business trip in Chicago.

Eric, he told me, wouldn’t be flying home that evening.

Had he missed the plane? I asked. Not exactly, he answered. Eric was in the emergency department of a community hospital near O’Hare. He had collapsed while boarding his flight.

Eric, who was 53 and formerly healthy, had suffered a brain-stem stroke that had caused Wallenberg’s syndrome: The stroke had blocked an artery on the right side of his neck, depriving part of his brain of the blood it needed.

Eric was far from home, hospitalized with a serious stroke. My thoughts were racing. Thank goodness he wasn’t alone, thank goodness the stroke happened before the plane took off, thank goodness I’m a registered nurse with lots of friends and resources, I told myself.

In an instant, my family was thrown into the world of medical “care coordination” and “transition management.” From the moment Eric fell ill, the goal was to get him hospitalized in Philadelphia — and, of course, eventually home and well again. But when this saga began, I had no idea how large the obstacles to reaching that goal would be — or how wide the gaps in his care would be along the way.

My new life begins

I arrived at Eric’s bedside at 11:30 a.m. on April 27. Although I’d been able to secure a bed for him in the neurologic intensive care unit at a Chicago academic health center, it took me until 5:30 p.m. to get him into a hired ambulance for the trip from the community hospital.

Eric spent 10 days hospitalized in Chicago. He couldn’t swallow, and he couldn’t walk. He had rapid, involuntary eye movements, called rotary nystagmus, that made him look like a cartoon character with his eyeballs going round and round in circles. He also had a drooping right eyelid, pupils that were different sizes, double vision, numbness on the right side of his face and in his left arm and leg, and other neurologic issues.

As his wife, I wanted to cry. Instead, I put on a brave face and became his care manager.

And then there was one

During Eric’s hospitalization, he was cared for by a team of more than 50 health-care professionals and students. He was asked to repeat his story over and over, and although information was passed along from shift to shift, inaccuracies inevitably cropped up, as in the whispered game of telephone. It was up to him — with my help — to correct them. (Eric was able to speak, but his voice was very hoarse.)

Getting Eric from the neurologic intensive care unit to step-down care and then to general care was relatively smooth. But when he was finally well enough to transfer to an acute rehabilitation hospital in Philadelphia, things got a lot more difficult. There was no communication about the handoff between the two facilities. I don’t know why, given that such situations are hardly unique. But everything was left to us, the ill patient and his wife. Basically Eric was going from a group of 50 caregivers to one — me.

The paperwork begins

My first challenge was getting a copy of Eric’s complete health record from his hospitalizations in Chicago, along with copies of all of his imaging studies. It took many conversations and phone calls until I was finally given paper records to carry back to Philadelphia. I also had to locate an acute rehab unit bed in a hospital that would be available on the day and at the time Eric needed it and get approval from our health insurance company to move him from hospital to acute rehab.

The transfer would be difficult, especially because Eric couldn’t walk. At about $10,000, hiring an air ambulance was prohibitively expensive. (I was told that this would be an out-of-pocket expense not covered by health insurance.) To fly on a commercial airline, Eric would need to move himself with assistance from a wheelchair to an airplane seat.

How, I wondered, do others in similar circumstances — especially people without my nursing knowledge, familiarity with hospitals and professional contacts and resources — navigate this kind of complexity?

Almost home

At 1:15 p.m. on May 6, Eric and I flew out of Chicago on a commercial jet. An attendant — an employee of the airport who was not medically trained — met us at the curb at O’Hare with a wheelchair and stayed with us until we boarded the flight. There was no cost for this service; we gave the person a tip.

We made sure to have with us copies of Eric’s health records, which included a hospital discharge summary, the list of medications he was taking and his imaging studies. We reached the acute rehabilitation hospital at 5:30 p.m. No one in Chicago ever contacted us to see if Eric had made it there safely.

Eric continued to improve during the next 12 days. With intensive physical therapy, occupational therapy and a variety of other therapies, he progressed from a wheelchair to walking with a walker, and then to being able to go up and down stairs. Although he continued to have double vision and problems with balance, coordination and a constellation of other symptoms, on May 17, he was ready to go home. Everyone was thrilled. But neither Eric nor I was prepared for what lay ahead.

An ever-growing to-do list

The home phase began when we were handed a 10-page report with Eric’s rehabilitation discharge instructions. It listed the five medical personnel Eric had to see: a physical therapist, a neurologist, a primary-care doctor, a vascular physician and, eventually, a rehab physician.

Because Eric was taking a blood thinner, he was required to have his blood drawn weekly; the first draw would need to be the next day, May 18. But the report didn’t say where to go or with whom to make the appointment. Eric also was given seven prescriptions, along with 29 pages of printed information about them; five pages of instructions dealing with home safety; six pages listing outpatient rehab facilities; and a handwritten list of four community stroke support groups. And his vision was still compromised!

Although the discharge instructions were written in lay terms, there was just too much information to absorb. No one reviewed it with us, nor was there any communication with Eric’s longtime primary-care doctor.

Just as when we’d left Chicago, there seemed to be an assumption that we could manage the complexities of Eric’s care on our own. No one assessed our readiness or capacity to do so, no one offered us any support, and we received no follow-up calls in the subsequent days.


May 17 was a wonderful day: Eric was home at last. But it was also the day we entered the twilight zone. When we arrived home, we found a voice-mail message telling us that we were “being placed in collection” for not paying $23,312 owed to the community hospital in Chicago where Eric had spent 20 hours. The mailbox was jammed with hospital and ambulance bills. How, I wondered, can we re-engineer the delivery of health care so that it is as timely and efficient as the medical billing process?

The next day, our aggravations continued as we tried to find a lab to draw Eric’s blood and to schedule his follow-up appointments. What about the neurologist appointment required in two weeks? The next available appointment was in October. The vascular physician appointment needed in two weeks? The next opening was in July.

I started calling on members of my professional network to get appointments within the prescribed time frames. Each office where we scheduled an appointment asked that we bring all of Eric’s Chicago records and imaging studies. This was another problem: We’d given all of that information to the rehab hospital in Philadelphia — and it had lost everything. I needed, again, to gather all of the records and imaging studies from Chicago.

And that phone call saying we had an unpaid balance of $23,312? After making multiple calls, I discovered that the community hospital had incorrectly recorded Eric as having Medicare Part A and no other insurance. But the hospital informed me that its error was our problem. It would take at least 30 days to correct the bill, and in the meantime the hospital said it couldn’t reverse the collection notice. The calls didn’t stop until June 23, when the matter was finally resolved; in fact, we owed just $3,076.

Where were the nurses?

While he was in a hospital, I had 24/7 access to one of Eric’s registered nurses if I had a question about anything. After he was discharged, we were on our own. We had no one to call or e-mail for support or guidance.

Yet not a day went by when we weren’t coordinating his care among his health-care providers as his condition and needs changed. Someone from the hospital should have contacted us at home the day after Eric’s discharge to make sure we knew how to follow up on his care. They might have asked, for example, if we knew whom to call for appointments — and whether we had transportation to get to there.

As a patient’s wife, I would have welcomed having an RN as a point of contact. As a nursing school dean, I know the evidence demonstrating that registered nurses are critical to the operational and financial success of health-care delivery systems. Their education, knowledge, skills and competencies are as much an asset in outpatient settings as they are in hospitals. I also know that nurses have the expertise to bridge care transitions and are critical to coordinating care across all settings.

The Care Transitions Intervention developed by Eric Coleman at the University of Colorado uses “transitions coaches,” primarily nurses and social workers, who first meet patients in the hospital and then follow up through home visits and phone calls. Another proven transitional care model, developed by Mary Naylor and colleagues at the University of Pennsylvania, employs advanced-practice nurses to coach patients and their caregivers, coordinate follow-up care plans, and provide regular home visits and round-the-clock support by phone.

Although these models have been a­dopted by hundreds of hospitals, it is frustrating that they aren’t more widely utilized. Fortunately, one of the reform strategies in the Affordable Care Act, the formation of accountable care organizations, should spur health systems to adopt these models.

The Centers for Medicare and Medicaid Services has established 33 quality measures for accountable care organizations, some of which deal with the patient-caregiver experience. Earlier this month, Medicare announced that, starting in January, it will pay doctors for care coordination services when transferring patients to skilled nursing facilities.

But will these measures go far enough? I’m skeptical. For example, the patient/caregiver experience is a broad measure that includes how well doctors communicate; it implies a verbal exchange or discussion of information. In our case, technically, we were “communicated with,” but the communication was far from adequate.

Providing patients with written instructions before they’re discharged from a hospital is not a sufficient indication that a patient’s care has been “coordinated” or “managed.” True coordination and management requires ongoing communication between patient and provider and among multiple providers. Patients and their families need to participate actively in these processes at all stages, including needing to know what to do if conditions worsen when they are home.

A long-term relationship

Experiences such as my family’s offer guidance on what’s needed to get so-called patient-centered care right. We need to ensure that this care is part of a long-term relationship in which patients have a specific point of contact with a team of providers, and that this team is accountable to those patients and responsible for coordinating their care. Patients and their families need access to information and experts around the clock.

This could be accomplished in small practices with a designated on-call provider who has access to electronic health records, or by call centers staffed by registered nurses with access to the records. Registered nurses seem to me like the group with the right training for the job, but I also believe that getting it done properly is more important than which profession does it.

At the heart of this coordination is assessing patients’ and families’ capability. We should never assume that they can do it all on their own. When people are in hospitals, they’re sick and vulnerable. That doesn’t necessarily change on the day they’re discharged.

Swan is dean and professor at the Jefferson School of Nursing at Thomas Jefferson University in Philadelphia. This article was excerpted from the Narrative Matters section of the journal Health Affairs and can be read in full at www.healthaffairs.com.