This article appears in the April 2012 issue of HealthLeaders magazine.
It was a wonderful and rare accomplishment. In 2008, a 23-year-old woman with severe cystic fibrosis successfully carried and delivered a healthy, full-term baby girl at Long Island Jewish Medical Center, in New Hyde Park, NY. Despite that major achievement, the complex regimen of daily medications that Christina Marie McDonald needed to manage her disease created challenges.
"On the maternity ward, no one understood anything about CF," says Ruben Cohen, MD, director of the adult CF program and codirector of the asthma center for the 888-bed tertiary care teaching hospital. "She didn't receive her medications when she needed them."
The circumstances of McDonald's delivery served to highlight an issue that hospital personnel had already begun to grapple with for adult patients with CF: how to deliver the same quality of care in the hospital that patients routinely administer themselves at home.
"After that experience, the patient's father wrote a letter asking, ‘Why does the hospital tie our hands and put these routine measures in the hands of busy medical personnel when the patients and their families know the illness very well and are experts in their own care?'" explains Fatima Jaffrey, MD, director of outcomes research at LIJ Medical Center.
Caring for adult CF patients
CF is a genetic disease that affects approximately 30,000 Americans by damaging lung function and causing severe breathing problems and life-threatening infections. It also obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.
Long considered a pediatric disease—as recently as the mid-1980s, few patients made it past their teen years—medical advances have resulted in people with CF living increasingly longer lives, well into their 30s and 40s and beyond. As patients get older, however, the disease tends to become more complicated, according to Jaffrey, as does the regime of high-calorie supplements, antibiotics, digestive enzymes, and breathing treatments—as well as chest therapies—that patients administer to themselves every day at home orally or via nebulizer, IV, or stent, on both a scheduled and as-needed basis.
CF patients are routinely hospitalized once or twice a year for approximately two weeks for IV antibiotic treatments and are admitted through emergency departments for a variety of breathing, digestive, or infectious flare-ups. LIJ Medical Center admits between one and five CF patients a month, and upon admission, their medication routines were traditionally taken out of patients' hands and turned over to hospital nursing staffs. The result was that patients waited for 15–29 hours for their first breathing treatment, 18 hours for their first round of IV antibiotics, and often missed snacks and meals because the digestive enzymes they needed were not delivered in advance of eating.
"Until 2002, all CF patients were admitted to pediatrics, no matter what their age, and adult hospitals were not used to CF patients and their regimens," explains Cohen. "It all came to a head with Christina. That's when we realized that it's not the fault of one or two people who just don't understand, but that we need a new way of doing things."
Letting the frontlines lead
LIJ Medical Center embarked on a process to explore how to improve the in-hospital delivery of daily medications to CF patients. It is led by Jaffrey, who was part of the inaugural class of the Dartmouth–Hitchcock Leadership Preventive Medicine Residency, and who is pursuing a master's in healthcare delivery science at the Dartmouth Institute for Health Policy and Clinical Practice.
In February 2009, Jaffrey began coaching an interdisciplinary team of all the frontline caregivers, including Cohen, and a respiratory therapist, dietician, nurse, pharmacist, CF social worker, and Christina's father, in how to apply the methods of improvement science to improving CF care. The team focused on how it could support and empower the patient while still meeting regulatory requirements. "The goal," says Jaffrey, was to go from "a system of care that wasn't deeply connected to patients' experiences to one that is incredibly connected."
That summer the team began meeting for an hour every week to engage in activities that ranged from brainstorming to generating aims statements with numeric goals, creating measures to know that they were moving in the right direction, tracking measures using statistical process controls, and using the plan-do-study-act process to rapidly test change. Jaffrey also met with the team for two hours each month to educate members about healthcare quality improvement systems and how to use the Dartmouth program's five p's—patients, professionals, processes, patterns, and purpose—to assess their work. In addition, she coached team members so that they could report the team's findings to the hospital's leadership on a monthly basis.
"This is a carefully considered approach to process change that allows us to test our assumptions about safety and risk and make adaptations to mitigate risk," says Jeremy Boal, MD, senior vice president and CMO of North Shore-LIJ Health System. "After implementation, we continue to audit it for adverse events by asking patients to log their experiences and by meeting frequently with the staff to see if they've identified new risks."
Six months after it was established, the team met its first two goals of reducing the length of time patients had to wait for the delivery of the medications for which they were admitted—to two hours (from 15 or more) for the first breathing treatment and four hours (from 18) for IV antibiotics. Beginning with a proactive risk assessment, the team had mapped the current system of care delivery and tested assumptions about its safety as well as the safety of new ideas. It also generated an order set that coordinates the workflow of all caregivers and, according to Jaffrey, "honors the actual way the work is done in the hospital."
The program went live in March 2010, with patients who opt to self-administer receiving special locked boxes containing all of their medications. Patients keep a log of what they take and when; nurses review the log to determine if medications are being taken correctly. The nurses also work with the hospital's pharmacists to keep the box replenished.
"The process gives the nurses oversight so we can still manage the documentation," says Margaret Murphy, RN, senior administrative director of patient care services. "It all seems so simple in retrospect, but at the time it required a lot of coordination and education. It offers a tremendous amount of efficiency while ensuring that the patients who know their medications are administering them correctly."
Additional benefits and opportunities
Self-administration has also opened up opportunities for physicians, nurses, and respiratory therapists to reeducate their patients on how to use their medications—and some of those patients may think they're doing it correctly, but have fallen into bad habits over the years.
"I had one patient who kept getting readmitted and always said ‘yes' when I asked him about his medications," Cohen says. "But when I had the opportunity to see him self-administer in the hospital, I could see what he was doing wrong. From that I learned how to ask more specific questions and work with them to get better adherence."
Having dramatically reduced the time it takes to provide the care CF patients need has reduced the average length of stay in the hospital for CF patients to seven days from 11. The success of self-administration is also reflected in patient and professional satisfaction surveys: Satisfaction rates for both groups rose from less than 20% before the intervention to above 95%.
"There's no one-size-fits-all model when trying to build patient-centered care," says Boal, "but studies show that the more control patients have in the hospital, the better the outcomes. The way the culture changed around the care of CF patients is teaching us how to let patients with chronic illnesses be the experts they are."
The group, with most of its original members, continues to meet weekly and apply the clinical microsystems process to a range of other issues to perfect the care LIJ Medical Center delivers to its CF patients. This includes the self-administration of insulin for those patients with CF-related diabetes and helping residents use the redesigned order set with new EMRs. The group is also focusing on improving the transition of patients from pediatrics to the adult hospital and has turned its attention to how the staff can improve end-of-life care for patients and their families.
"What's remarkable is that this sophisticated work can only be done at ground level," explains Jaffrey. "People who do the day-to-day work can get through these issues with so much velocity. When we empower them to be the change agents, we're leveraging the largest untapped resource we have in healthcare."
This article appears in the April 2012 issue of HealthLeaders magazine.
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Betty A. Marton is a contributing writer for HealthLeaders Media.