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Patient-Centered Care

What I learned from listening to a patient

ListeningI was reminded again recently of how important it is to sometimes just sit back and listen to what our patients have to say. Every month, as part of our hospital-wide patient safety efforts, I meet with staff and interview patients, seeking to learn how we can improve the care we provide to them.

A young patient shared two stories with me, one telling me how we get it right and one reminding me how we sometimes get it wrong, even without realizing it. She was nervously awaiting a procedure in Interventional Radiology when a nurse sensed her anxiety and called in a child life specialist. The specialists came and significantly helped relieve the patient’s suffering. She listened to the patient, offered a comforting touch, and provided her age-appropriate reading material and Sudoku puzzles, a brilliant though infrequently used intervention. If anything could take your mind off of your illness, it is Sudoku.

What was amazing was that after all the patient had been through—weeks in the hospital, countless procedures, scores of clinicians—what she remembered was the nurse’s act of kindness by caring enough to call the specialist. The patient reminded me that though we can cure disease sometimes, we can relieve suffering always, often with nothing more than a kind word, a gentle touch or a warm smile.

As I listened, the patient, along with her mother, went on to tell me more. They told me how the patient has complex allergies and that her mom knew her disease better than any clinician. They had lived with the disease for a decade. Yet at times, neither the patient’s mother nor the patient felt they were being heard by the doctors. The mom expressed frustration that clinicians often dismissed her concerns and discredited her knowledge.

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Tell your story: Excellence in patient- and family-centered care

microphoneLast year, Sarah Andryauskas, then a new nurse in our emergency department, was caring for a patient with diabetes who had trouble maintaining healthy blood glucose levels. His disease had contributed to several hospital visits over the preceding months and years.

As health care providers, it’s tempting to attribute such repeat visits to patient noncompliance. But Sarah took the time to ask: Was there a barrier that kept the man from taking control of his health? Indeed there was, as the patient explained that diabetes-related sight loss had made it impossible to read his glucometer—and thus to manage his blood sugar.

Sarah’s story of this revelation, and the extraordinary steps that she and a colleague took to find a glucometer that reads results out loud, is the first in a new podcast series that delves into what it truly means to practice “patient- and family-centered care.”


From time to time, I’ll use this blog to highlight inspiring new stories—from caregivers, patients, or both—that have been added to the series. Visit the website for the project, called The Heart of Caring, anytime to see the full list of podcasts.

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Counting our patient safety blessings

My daughter just asked me what I was thankful for this Thanksgiving. As I reflected on the blessings in my family and personal life, I also thought about what I was grateful for in patient safety. While progress has been slower than any of us would want, we certainly have many things to count:

Patient- and family-centered care is getting long-overdue attention. About two years ago, nurses on one unit at the Johns Hopkins Children’s Center began conducting  shift-change reports in patients’ rooms, rather than in the hallway, so that patients and family members have the chance to ask questions and get the most up-to-date information. More hospitals are including patients on committees. These are small changes, but they represent a larger acknowledgement of the importance of building care around patients’ needs and to seek their wisdom.

Clinicians are increasingly engaged in the work of patient safety. In the past they have largely stayed on the sidelines or have pushed back—often appropriately—against regulatory mandates, interventions or measures that are not informed by science. Yet clinicians did not step forward to take the lead. Now they are. Professional societies, physicians, researchers, nurses, want the science to be good, the measures to be wise, and the interventions flexible enough to fit into their local context. Over the last two weeks, I had calls with several professional societies planning safety programs. At Hopkins, more than 100 faculty members recently showed up at a meeting for those interested in conducting patient safety research.

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Giving patients the big picture

"I have a complicated medical situation that involves neurologists, surgeons, obstetricians, specialized ophthalmologists and others. I was at Johns Hopkins and very lucky to be because I had some of the best doctors in the country. What really struck me, though, was that each specialist was really very narrowly focused and really ne'er the twain did meet. I felt like it was up to me to put the pieces together into some kind of sensible picture in order to move forward to greater health. I will note that, for the most part, they had great bedside manner.”

Rhonda Wyskiel, an ICU nurse and staff member with the Armstrong Institute, was one of the guests on The Kojo Nnamdi Show last week when the radio host read these words from an e-mail, penned by a woman named Anne. Rhonda, one of three guests who appeared on the NPR-affiliated program to discuss the challenges of providing patient-centered care, acknowledged that this writer’s experience was common, and she empathized with Anne. As Rhonda pointed out, there are efforts at the hospital and national level to better coordinate care so that patients can have a central contact for when they have questions. For instance, in some ICUs, there is an intensivist who coordinates a patient’s care in that environment.

But Anne points out a problem that eats away at the quality of care that hospitals provide and leaves patients feeling confused: Too often, care is organized around providers rather than patients.

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