Why It Matters
Respectfully listening to a patient tell their story of harm galvanizes even already committed patient safety professionals in a way that few other things do.
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Listen to Patients: The Discomfort Is Worth It

By Jo Ann Endo | Tuesday, September 25, 2018

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When you hear Clement Asare describe his arduous medical journey, it’s easy to understand why Patricia Folcarelli, Lauge Sokol-Hessner, and others argue that disrespect is a form of patient harm.

Six years ago, Mr. Asare was hospitalized in the aftermath of a serious car accident. He suffered a series of medical errors and injuries over several years, including incorrect diagnoses, medication errors, and pressure ulcers. But when he tells his story, perhaps most striking is the lasting effects of the pain and powerlessness he experienced because clinicians repeatedly failed to treat him with respect and compassion.

Mr. Asare recounts how surgeons expected him to give his consent for procedures without fully answering his questions about why the procedures were necessary or what the risks were. He remembers staff who labelled him “difficult” because of his frequent requests for explanations or additional information.

“I felt totally disrespected,” Mr. Asare recounts. “For the medical staff, it was like they’re the professionals, and they’re doing their work, and I have no right to [question them].”

“Some of the nurses [I had] were not even on speaking terms with me because they saw me as somebody who thinks he knows too much,” he says.

One incident exemplifies how a clinician’s unwillingness to listen caused a dangerous situation. During one of his many extended hospital stays, Mr. Asare noticed that a new nurse was bringing his medication two hours early. “I normally [took] my drugs around eight o’clock in the morning,” he explains. When he pointed out this discrepancy and that the medication looked unfamiliar, the nurse told him his illness was making him forgetful. When Mr. Asare continued to refuse the medication, the nurse became angry.

“I begged her to go and check the records,” he recalls. When the nurse finally confirmed that she had, indeed, made an error, and had been trying to give him the wrong patient’s medication, Mr. Asare remembers her reaction: She insisted everything was fine and left the room.

“If I had taken it, I don’t know what might’ve happened because I don’t know what the drugs were for,” he says. “I was lucky.”

Bringing in the Patient’s Voice

If you’ve ever been in the room when a patient shared their story of harm, you know it’s unforgettable. It’s very uncomfortable to hear someone essentially say that you — or people like you — let them down.

But teams who listen to patients tell their stories will tell you the discomfort is worth it. Numbers on a spreadsheet and plots on a graph can’t compare to someone describing how a health care–acquired infection caused them years of pain and suffering. Witnessing the overwhelming grief of a parent who lost their child after misdiagnosed sepsis can’t help but stay with you. It galvanizes even already committed patient safety professionals in a way that few other things do.

Knowing how powerful it could be to hear a patient’s perspective, IHI invited Mr. Asare to meet with the health care professionals and government officials who gathered recently in Accra, Ghana to launch IHI’s new Africa Hospital Patient Safety Initiative. Representatives from Ethiopia, Ghana, and South Africa listened with rapt attention as he described his experiences. “His story compelled us to define patient safety and medication harm in terms of its impact on patients,” says Joe Mando, IHI’s Director of Operations for Africa. “It also steered the rest of the meeting towards a focus on patient-centered care.”

For his part, Mr. Asare deeply appreciated being asked to take part:

“[The meeting participants] really showed their concern and told me they were sorry it happened. . . For the first time, I have people who are ready to take action . . . to correct these problems. For all these years, I’ve never had health professionals who’re ready to listen to what the patient has to say, how the patient feels. I felt happy to get the opportunity to talk from the patient point of view to health professionals.”

Mr. Asare is hopeful other patients may learn from his example of advocating for better patient safety. “I’m hoping patients learn that they can contribute to their health care,” he says. “I hope more patients learn they have the right to have a say.”

Jo Ann Endo is a Senior Managing Editor at IHI.

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