When Dr. Seth Walker, an Emory Healthcare pulmonologist, decided to take a position in Cleveland, Emory sent out a letter letting his patients know.
“My leaving in no way diminishes my concern for you and your well-being,” Walker wrote.
It didn’t have the desired effect. The letter was riddled with bizarre typos that the family of one patient, Kaitlin Fowler, found off-putting. Worse, Kaitlin received the letter — or rather, her parents did — four years after her death.
Emory should have known: Kaitlin died of cystic fibrosis, the disease Walker was treating her for, lying inside Emory’s flagship hospital on Clifton Road.
“We’re just amazed,” said Jeff Fowler, Kaitlin’s father. “It’s like … how can you send this out to us?” Another family they know also got such a letter sent to their dead child.
Emory is one of the most prestigious medical institutions in the South, and it’s expanding. It puts big muscle into academic expertise and gets high marks for clinical outcomes. But one area where it comes out average, according to federal data, is patient experience.
The letter incident exemplifies a tension in a human-centered trend in health care, said Jason Wolf, the president of the Beryl Institute and founding editor of the Patient Experience Journal.
“You want to give them a little bit of credit,” Wolf said. “It’s good you’re being active in your outreach. But you’ve got to be mindful in the way you do it.”
His organization will publish this week a study on what patients expect from health care workers and institutions. First, of course, comes health. “Second, and not far behind,” he said, “is that they were treated as a person.”
The implications can be significant, he said, not only for a health system’s popularity and financial health. If patients don’t feel engaged, they may slack off or change their participation in their care, and that can have an impact on their clinical outcomes.
“So it has significant implications, I think,” Wolf said.
Health care institutions are driving to improve “patient experience” these days; they’re rated on it and in some instances are paid based on it. But not all of them agree on what “patient experience” even is.
The Beryl Institute defines patient experience “as the sum of all interactions, shaped by an organization’s culture, that influence patient perceptions across the continuum of care.”
One article in the journal Health Leaders led off with the example of another messed-up patient form letter to illustrate lack of connection and poor patient experience.
Another expert in patient experience, though, cautioned not to read too much into such incidents.
“I’d be more concerned if something like that happened during the episode of care,” said Dr. William Maples, an oncologist and president of the Institute of Healthcare Excellence. “If a physician did not create an environment where the patient felt respected, cared for, heard, listened to. Those are the critical things, where we truly are understanding the patient’s needs, we truly are showing that we have empathy and compassion as we provide our scientific care for that particular patient.”
That’s where it’s crucial that doctors are creating an environment where patients and team members can speak up, Maples said, so health care providers have the information they need to make the right decisions. “All of those things are incredibly important to how patients do,” Maples said.
A technological glitch should be fixed, Maples said, but “this is not about patient experience.”
In modern health care generally, “the clinical team is trying very hard to really create the best experience with the situation and the environment that we have,” he said. And “if we begin to make (‘patient experience’) something that it’s not, it only disillusions the team.”
Emory did not say how the mistakes happened, but it released a statement saying it was working to prevent such a situation from ever happening again.
“Emory Healthcare is deeply sorry for sending a physician’s departure letter to the family of a deceased patient and for the pain and disruption this error caused,” the statement said. “The letter and its distribution were not up to Emory’s quality standards.”
As for the Fowlers, the letter is nothing compared with the way cystic fibrosis ground them down. They received attentive, personal care under the Emory umbrella while Kaitlin was a minor, at Children’s Healthcare of Atlanta’s Egleston Hospital on Emory’s campus, Fowler said. At Emory University Hospital things changed. Sometimes care was heroic. Sometimes it was a revolving door of residents.
“My daughter was in the hospital over 380 days of her life,” Fowler said. “It’s one of these diseases that really wears on you. … You spend a lot of time in hospitals. You spend a lot of time with doctors. You just kind of get used to the dealings.”
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