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Dome - At the center of care

February 2011

At the center of care

Date: February 7, 2011

Compelled to practice visionary medicine at the new hospital, Hopkins calls upon the wisdom of patients and families.


illustration of woman and child surrounded by physicians
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Over the years, the sight of idle family members sitting next to a loved one’s bed had become all too familiar for Rhonda Wyskiel. Putting herself in their shoes, the intensive care unit nurse figured that many close relatives, some of whom came daily for months at a time, longed for a way to be useful. “They want to do something, but are too afraid to ask,” Wyskiel says.

Soon, patients and family members will have that opportunity in Hopkins Hospital’s Weinberg intensive care unit (WICU), thanks to a tool designed by Wyskiel. It’s a “family involvement menu” that invites kin to perform tasks that range from feeding and brushing teeth to giving shampoos and positioning pillows.

The menu also serves as a way to engage families in their loved ones’ treatment plans, a role Wyskiel believes is vital to achieving the best possible patient outcomes. She is not alone.

As Hopkins prepares for next year’s expansion into the new clinical buildings, it’s also ushering in the practice known as patient- and family-centered care, a way of thinking that prizes communication, collaboration and medical insights gained through each patient’s personal experience.

By forging an institutional mindset that revolves around patients and families, Hopkins is also responding to the financial and regulatory pressures confronting the nation’s health care system.

Spurred by evidence that a more inclusive culture of care improves patient satisfaction and safety and offsets costs, the office of Judy Reitz, executive vice president and chief operating officer of The Johns Hopkins Hospital, is spearheading the culture shift. With input from more than 1,800 faculty, staff, patients and families, Hopkins Hospital identified the qualities of a health system responsive above all to patient and family needs. Those discussions are continuing through the Patient and Family Centered Care Advisory Council convened by Reitz, and through other work groups.

The WICU family involvement menu and dozens of other initiatives across Hopkins Hospital have paved the way for the new philosophy of care.

An open visiting-hours policy has made family members feel welcome since the WICU opened in 2000, Wyskiel says. Building on that commitment, families were invited to attend rounds on the unit. “They love it. They have their questions answered and give the care team information that is important for treatment. They are part of the team,” Wyskiel says.   

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“To improve safety and quality of care, ‘Health care organizations should aspire to meet the unique needs of their patients—patient by patient.’”
—From A Roadmap for Hospitals published by the Joint Commission.

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Also in the vanguard is the Children’s Center, which adopted a family- and patient-centered care initiative in 2007. That led to the establishment of the Family Advisory Council and family-centered rounds. A full-time family-liaison position was also created to speak on behalf of parents.

Since 2009, nurses in the medical-surgical unit of the Children’s Center have delivered end-of-shift reports at the bedside that allow parents and patients to make sure handoffs are complete. Parents of pediatric patients now also have the option to activate the rapid-response team should a child’s condition deteriorate. Additionally, Pediatric Oncology piloted a “meals on demand” program that will become available to all pediatric inpatients when the Charlotte R. Bloomberg Children’s Center opens in 2012.    

Innovation to the core

The culture shift at Hopkins has gained momentum from a national mandate tied to health care reform. “To improve the overall safety and quality of care provided in hospitals nationwide, health care organizations should aspire to meet the unique needs of their patients — patient by patient,” write the authors of A Roadmap for Hospitals, a Joint Commission manual for restructuring traditional health care models.     

Safety champion Peter Pronovost is also a forceful advocate for enlisting patients as an important resource in their own care. Recently, he wrote that a conversation with a surgical oncology patient on Weinberg 4C “reinforced my belief that patients see risks that clinicians may not and that improving patient satisfaction can also have benefits in safety.”

The participation of families as well is vital to patient safety. Evidence suggests, for example, that consistent oral care, an option on the WICU family involvement menu, reduces the incidence of ventilator-associated pneumonia, Wyskiel says. As hospital resources dwindle and patient acuity rises, families who pitch in with these services also can help to alleviate the burden on overworked nurses and clinical associates, she adds.   

Improving safety with respect

However, formidable challenges remain to achieving a patient- and family-centered mindset throughout the institution. For Hopkins anesthesiologist Rebecca Aslakson, the most difficult hurdle is communication. For instance, a son may not understand that fistula is a technical term for an opening in the body caused by disease or surgery. And a patient with necrotic toes may be horrified to hear from a physician that she needs a guillotine amputation, a common procedure with a scary name. While in training, “You spend so much time in your own community, you lose your ability to hear outside of it,” Aslakson says.

Communication gaps arising between caregivers can also interfere with a family’s ability to make decisions for loved ones. As a postdoctoral fellow in the ICU, Aslakson had witnessed the frustrations of families who “would ask the same questions of different specialists and get different answers,” she says. 

Hearing conflicting opinions about treatment plans and prognoses, families and patients had no idea what to expect; nor could they make decisions about whether to agree to further interventions or to make arrangements for end-of-life care, Aslakson explains.  

In response, she, along with Wyskiel and others, launched the Family Meeting Project, a six-month WICU pilot study that brought together for a one-time meeting the care teams and family members of patients who had spent at least seven days on the unit. “It sounds so easy to get everybody in the same place so families can ask their questions,” Aslakson says. “And team members would be strongly encouraged to come up with a unified position so the family gets a united message.”

But the logistics of arranging meetings at the convenience of all providers proved costly and time consuming and not every physician understood that each meeting demanded more than a brief “update.”  But for some family members, including Donna Cox Schack, the meeting was a godsend.

As the wife of a WICU patient, she was made to feel comfortable at the meeting and invited to speak up. “They encouraged me to ask questions,” she says, “ and everybody was forthright in wanting to give me information.”

During the meeting, the two residents who were caring for Schack’s husband compared notes on their differing opinions. “They were double-checking each other,” she says. “I was happy to hear that I was getting the true perspective.”

Most important, she needed to know the truth about her husband’s condition and she got it. “At that point, I didn’t know what to expect,” Schack says. Although the good news she heard was fleeting and her husband later died, Schack is certain that at the time of the meeting, she received the most accurate information available. Upon her husband’s death, she asked that donations be made in his name to revive the Family Meeting Project, which lacked the funds to continue.

Less than a year after her husband’s long, painful decline, Schack recalls encounters with providers both empathetic and arrogant. But the meeting stands out as a moment when she became an equal with providers in the care of her husband and proof of the lasting value of patient- and family-centered care.

—Stephanie Shapiro

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