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Voices for Safer Care

Insights from the Armstrong Institute

Patient-Centered Care

Changing The Conversation About Patient-Centered Care

Earlier this year, our hospital staff was weighing a new 24/7 family presence policy to allow immediate family members to stay with  patients 24 hours a day. We knew this was a step in the direction of delivering patient- and family-centered care.

We presented the proposal at a meeting of our Patient and Family Advisory Council.  One of the members of the council told a story that drove home the importance of this decision. When her son was battling a fatal illness in the hospital, she had to leave him when visiting hours ended. She couldn’t stand the thought of being far away, she told the group, so instead of going home she slept in her car in the hospital’s parking garage.

It’s hard to gauge exactly how her story ultimately affected The Johns Hopkins Hospital’s new 24/7 family presence policy. But one thing is clear: Involving patients and family members in decision-making fundamentally changes the conversation for the better, whether the issue involves an individual treatment decision or a hospital-wide policy. Charlene Rothkopf, a former patient who sits on two of our health system’s safety and quality boards, puts it so eloquently. “Many times our health care professionals get so caught up in the day-to-day press of business, that they may lose sight of  the real meaning of what they’re there for,” she says. “Patients help bring that to light.” Patients appreciate the importance of simple things, such as discussing their concerns about an upcoming surgery or providing a compassionate touch, she says.

Sadly, the status quo in health care does not always engage patients and their loved ones, and we are all less healthy for it. We don’t always ask patients what their goals are for their care. We sometimes forget to introduce ourselves by name when we walk into a room. We deliver aggressive and expensive treatments to prolong life, without always having conversations with patients to determine whether they want these well-intentioned steps. We confuse patients with a stream of physicians and nurses that leaves them wondering who, if anyone, is overseeing and coordinating their overall care. We send patients out of the hospital without a clear understanding of how to provide self-care or without hard-wiring the connection to their outpatient physicians.Read More »Changing The Conversation About Patient-Centered Care

“Just like me”

Recently in one of The Johns Hopkins Hospital's intensive care units, a patient was dying from cancer and sepsis, and there was nothing that I, nurse Mandy Schwartz or anyone else could do to stop it. Yet as the patient’s family—two daughters and a husband—suffered at her bedside, Mandy saw their need for comfort, and she responded. Although she was busy with nursing tasks, she delved into the inner life of the patient and family. She helped the mother look as good as possible—hair combed, face washed, a clean gown and sheets. She made sure the patient was pain-free and not anxious. She hugged one daughter who was “a hugger” and avoided embracing the other daughter who wasn't. She sat with the family, listened and supported them in their anguish.

Schwartz gave comfort to the family because she cares and has true empathy.  There’s no way that we could train her to care more. Yet too often, efforts by hospitals to improve the patient and family experience approach it purely as a technical challenge. For instance, we provide scripts to health care professionals to help them navigate various situations, from what to say when walking into a patient’s room to service recovery when things haven’t gone as they wished.  We try to identify and broadly implement the practices that will best enhance patient experiences, such as rounding hourly in patient rooms to address pain management, bathroom visits and other needs.

These are well-intentioned and needed efforts to improve the patient experience. But they could very well backfire if we don’t simultaneously embrace the human element and tap into clinicians’ desire to be empathic healers and comforters. I fear that we send the wrong message, for instance, when we simply hand detailed scripts to staff in low-performing units or hospitals. Subtly, we’re labeling them as someone who does not care adequately for patients, and that they need to be taught how to do better. Here, we say, mouth these words and the patient and loved ones will believe that you care. Likewise, hourly rounding and other interventions will not be effective if we simply treat them as a box to be checked off.

Words are important, of course. And caregivers can certainly learn how to insert key words and phrases into their conversations with patients to show they care and open the door to more meaningful dialogue. However, health care is too complex and nuanced for a lengthy script to be useful.

Clinicians witness the extreme highs and lows of other people’s lives, yet like any job this becomes our everyday reality, with mundane documentation, meetings and bureaucracy. It’s easy to forget that “just like me” someone may be in the hospital for the first time, that their family members must take off work for an extended period of time to be with them, or that the outcome of their stay is a turning point in their family’s future.

When we lose sight of the connection with our common humanity, with our patients’ suffering, we can fail to connect with our patients’ needs for empathy as well as healing.  We can get so caught up in the tasks that we need to do that we don’t stop to care. While we think we are still delivering good care, patients perceive our frenzied state and decide it’s wiser not to raise valid concerns.

What can help us to reverse this?

There’s more than a single thing, but one powerful approach involves coaching caregivers on their interactions with patients and loved ones. On a surgical unit in The Johns Hopkins Hospital, scores on HCAHPS—the national post-discharge survey sent to patients after discharge—were far below national averages. In their written responses, some patients said that they felt unwelcome to raise concerns, or that staff made them feel like a burden.Read More »“Just like me”

The Ripple Effect

The doughnut shop I pass on my drive to the hospital isn't the kind of place where you might expect to see outpourings of random kindness. It sits in the shadow of a raised highway, a few doors down from a bail bond business and a block away from a prison complex that resembles a medieval castle. One Sunday before Valentine’s Day, the line to get served there was long, checkered with homeless people—some of whom sleep under the highway to stay dry and protected from the wind—and more well-off people getting breakfast or bringing bagels or doughnuts to work or church.

A homeless couple stood ahead of me. Their clothes and hair were dirty, and the undersides of their fingernails were caked in dirt, as if they had just come in from gardening without gloves. They appeared very much in love—standing close, gently touching and smiling. She wanted a heart-shaped doughnut, and he wanted the same. They reached deep into every pocket counting their change, hoping to find enough.

They were a nickel short. Sheepishly, they turned to me and asked for help. I had a feeling of injustice: Here I was bringing doughnuts to doctors, nurses and staff who did not need them, yet this couple would not have breakfast without help. Not wanting to shame them, I softly told them that they could order whatever they wanted and that I would be happy to buy them breakfast.

When they ordered, the cashier looked at them judgmentally. Perhaps she had been stiffed before, or maybe she knew they did not have the money. The woman spoke up, stating that I had offered to pay. The cashier looked at me and I nodded.

That is when the cascade started. “What a great idea,” said a woman behind me, who was picking up doughnuts for Sunday school. She offered to buy breakfast for the homeless person next to her. The nurse behind her did the same, as did the police officer further back. The nurse and Sunday school teacher discussed how they were going to come back the following Sunday to do this again.

I was also moved by their generosity and handed the homeless couple more money to cover lunch and dinner and perhaps pay for a stay at a shelter. They wept, and I sat down at the table with them. They spoke excellent English, as if they had graduated college or higher. The man explained how they never intended to be that way. They hit some “rough patches” and made a couple bad decisions, he said. “We are something,” the woman told me. I told them that I believed them. My only request, I said, is that when they got back on their feet, they “pay it forward” to someone in need.

For weeks, I reflected on that day not quite understanding what exactly had happened. Then I read a New York Times article on the science of paying it forward. Cornell University sociologists Milena Tsvetkova and Michael Macy explained how we are much more likely to perform a kind act when we experience or witness one. Experiencing a small kindness is more potent than observing one, though in the case of the doughnut shop, observing proved a potent pill. They describe how chains like I observed are not rare at all. At a drive-through coffee shop in Manitoba, Canada, one customer paid for the person behind them, and the chain progressed to 226 people. At a Chick-Fil-A drive-through, there was a 67-customer cascade after one generous customer paid for the person next in line.Read More »The Ripple Effect