"To know the road ahead, ask those coming back," goes an oft-quoted Chinese proverb. That’s the philosophy behind peer support programs, which help connect people… Read More »Paving the Way for Peer Support Programs
For anyone with a serious medical condition, frequent hospitalizations and clinic visits can have a profoundly disruptive impact. Yet adolescent and teenage patients have a… Read More »What Teenage Patients — and Their Parents — Want from Their Care Team
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
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”
One of the most exciting things about working in patient safety and health care quality is that it’s not solely about advancing science or applying performance improvement methods. It is also about the excitement of being part of a social movement that is changing the culture of medicine—putting patients at the center of everything, sharing errors in the hopes of preventing future ones, and confronting hierarchies that stifle communication and innovation.
Kate Granger, a physician in the United Kingdom who is living with terminal cancer, has tapped into that sort of enthusiasm in a big way. Last summer, reflecting on a recent hospital admission, Granger remarked in her insightful blog that some members of her care team never introduced themselves when approaching her. She wrote:
As a healthcare professional you know so much about your patient. You know their name, their personal details, their health conditions, who they live with and much more. What do we as patients know about our healthcare professionals? The answer is often absolutely nothing, sometimes it seems not even their names. The balance of power is very one-sided in favour of the healthcare professional.
She asked that health care professionals make a pledge to introduce themselves to every patient that they meet, and share the challenge with others across the National Health Service. Thus was born a movement that went viral, aided by the Twitter hashtag #hellomynameis. More than five months since her post, there is a steady stream of tweets every day. Some clinicians wear lanyards with the hashtag, a show of support and a reminder to introduce themselves. Last week, NHS Employers released a video celebrating the #hellomynameis campaign.
More than anything, introducing yourself to patients is an issue of providing compassionate care. But it is also a patient safety issue. We know that faulty communication so often lies at the root of medical errors. How many adverse events might be prevented if all clinicians introduced themselves, making them more inviting to questions and concerns?Read More »Doctor Who?