When my husband, Eric, a hard-working Philadelphia lawyer in his early fifties with no history of health problems, suffered a stroke on a business trip in Chicago, the event opened my eyes to the challenges facing caregivers dealing with our current health care system.
I flew straight to Chicago, leaving our 13-year-old daughter with my mother, unsure of when I would return.Though frightened and anxious, I figured that my experience as a registered nurse and administrator at a world-renowned academic health center would help me navigate whatever awaited us. Still, steering Eric’s care through two hospitals in Chicago and a rehabilitation center here in Philadelphia – even just getting him transported from one place to another – proved to be a monumental undertaking.
Eric spent 10 days hospitalized in Chicago, where he was cared for by more than 50 health care professionals and students. From shift to shift, information was passed along like a game of whisper down the lane. It was up to Eric, as the patient, to repeatedly correct the inaccuracies.
The hospitalization was hard. But it did not compare with what would confront us after Eric got sent home.While he was in a hospital, if I had a question about anything, I had 24/7 access to one of Eric’s registered nurses. Butwe needed just as much help when he was an outpatient, and it was not readily available.
Upon Eric’s release, we were given 10 pages of rehabilitation instructions, a list of five specific medical personnel Eric was going to have to see, seven prescriptions with 29 pages of information about them, and another dozen pages on how to deal with other issues.
Although all of it was written in lay terms, it was just too much information to absorb. No one reviewed it with us to make sure we understood the key points. No one had any communication with Eric’s longtime primary care doctor. There were mistakes with prescriptions. There was even a voicemail message awaiting us in Philadelphia, announcing that we were “being placed in collection” for an outstanding $23,312 bill, a clerical error that took me thirty days to correct.
Simply coordinating Eric’s care, at times, seemed impossible.Once home, Eric needed blood drawn frequently, starting with the day after his discharge. But where would we find a lab to do it? What about the neurologist appointment required in two weeks when the next available appointment was in five months? Finally, lost in the shuffle were Eric’s records and imaging studies from Chicago, misplaced by the rehab center here in Philadelphia.
We got through it, relying at times on my own medical knowledge and the assistance of those I knew in my professional network. But how does a caregiver manage without familiarity with the system? I can only wonder.
After Eric left the hospital, we had no identified point of contact, no phone number, no e-mail address to use for support or guidance. No one had the responsibility to be knowledgeable about Eric’s comprehensive care plan, and no one helped coordinate his still-complicated care once he was home.
Outside the hospital, there needs to be that same coaching, coordinating, and round-the-clock support for patient needs--available over the phone for both patients and their caregivers.
We have to figure out a way to handle care transitions—the experience of moving from one care setting to another and moving among different care providers —in a kind, sensible, thorough, and realistic way.
For starters, we need:
Beth Ann Swan is dean and professor at the Jefferson School of Nursing at Thomas Jefferson University. She originally wrote this story for the November issue of Health Affairs.