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.

These and other shortcomings have spurred the movement for patient- and family-centered care, which has been gaining momentum for years. Like many early movements, it began with a vague idea. But as it has matured, the field is coming to understand not just what the concept means, but also what steps must be taken to close the gap between where we are and where we need to be. Two recent efforts highlight how far we have evolved:

  • A Roadmap for Patient + Family Engagement in Healthcare. This 88-page document lists the actions that must be taken at multiple levels—direct care, organizational, and policymaking—to fully engage patients in their care to improve their experiences and outcomes. Released in late September by the Gordon and Betty Moore Foundation, in collaboration with the American Institutes of Research, this project was guided by the input of more than 70 individuals from 60 organizations representing patients, providers, hospitals, payers, policymakers and others. I had the privilege of being part of this group, and will also be a panelist in a free webinar at 3:30 p.m. EDT on Oct. 7 that will talk about the Roadmap’s origins and how to adopt it. What’s remarkable about the roadmap is its expansiveness and level of detail. While addressing what clinicians, hospitals and others can do, it recognizes the importance of regulations—such as the need to reimburse clinicians for using certified decision aids with patients. It acknowledges the importance of research in this area, such as coming up with a greater number of valid measures that capture the level of patient engagement.
  • Best Practices in Patient-Centered Care. This research project uncovered the strategies used by U.S. hospitals that are top performers in components of patient-centered care—such as nurse responsiveness—or that have seen remarkable improvements. Led by Johns Hopkins’ Armstrong Institute for Patient Safety and Quality with support from the Moore Foundation and the Agency for Healthcare Research and Quality, it culminated in a conference last year in Baltimore where hospitals presented their tactics. Many common practices emerged. For instance, some of these hospitals conduct nursing shift-change reports in the presence of patients and their loved ones, giving them the opportunity to ask questions and better understand the care plan. Some hospitals also created new positions, such as an “attending nurse” who coordinates the patient’s care from admission to discharge. The conference proceedings, which will soon be released, provide useful examples to hospitals seeking to become more patient-centered.

As is often the case with such reports, the plethora of recommendations and tactics can be overwhelming. Taking these steps might feel like extra work foisted upon already busy health care professionals. But that doesn't need to be the case. If we truly believe the story that patients and families are part of the care team, these actions will naturally follow. If we implicitly understand that treating patients as part of the care team will makes their care more coordinated, compassionate and effective, then we will naturally want to adopt these steps. And I fervently hope we will.

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