A terrible place to be.
That's how Mary Robinson, PhD, RN-BC, described what's it's like to have a patient in pain, uncomfortable and frustrated, without knowing how to help them. When she came to Harris Methodist Southwest Hospital, Fort Worth, TX, in July 2007, one of her first tasks was to examine the cost-effectiveness of the hospital's care. An unexpected population of patients quickly came to light.
"We didn't have a huge number of patients with sickle cell disease, but the numbers were increasing, as well as their length of stay," recalled Robinson, vice president of patient care services. What's more, many nurses were finding themselves in that terrible place.
"The staff was expressing a lot of frustration and concern. Were they providing the appropriate care for these patients? What was the best thing to do [for them]? How could we facilitate their care while providing them with an optimum level of care?"
SPECIAL CARE: A task force at
Harris Methodist Southwest Hospital,
Fort Worth, TXtakes the guess
work out of sickle cell
management in adults.
Carol Meyers, RN,
(right) clinical coordinator
of med/surg, and
Arwen Riddle, RN,
demonstrate a safe hand-off
between emergency department
nurse and the floor nurse
with patient Benjamin Morales.
photo by Mike Morgan
Catching Up to Outcomes
Historically, individuals with sickle cell disease, or sickle cell anemia, could not expect to live long lives. In recent decades, mandatory screening for sickle cell disease at birth and early, effective treatment of symptoms have enabled patients to live fuller, more productive lives. With appropriate disease management, patients are now living into their 40s, 50s and even longer (National Heart, Lung, and Blood Institute, 2008).
"This is what we're seeing here at the hospital," said Linda Humphries, RN, ACNS-BC, CCRN, clinical nurse specialist. "I have some patients in their 40s and 50s, and most want to be well, work and lead healthy, productive lives."
What has gotten in the way of patients achieving those basic quality-of-life goals is a disconnect between the care for children with sickle cell disease and a continuum of care and resources for adults living with it.
Humphries looked into sickle cell treatment in the Tarrant County area and realized there was no consistency of care for these patients. Patients experiencing a painful sickle cell crisis were presenting at emergency departments around the Fort Worth area, but not always to the same ED and not always being treated by the same physician. In addition, not all healthcare providers are familiar with pain-management methods for patients with sickle cell and, therefore, might hesitate to administer an appropriate dose of pain medication.
"When a patient is in crisis, the cells start to block off small vascular areas of the body. It can affect anywhere from the head and brain down to the feet," Humphries explained. "The crisis exacerbates with severe pain in the joints, back and chest. They basically hurt all over. We don't want to ignore that; we want to treat them aggressively."
Aggressive treatment translates to IV narcotics and/or NSAIDS, and patients with sickle cell can handle significant doses because they have been receiving them their entire lives. Unfortunately, this can lead to misunderstandings, such as suspicions the patient is seeking pain medication to satisfy an addiction.
"These patients often have a difficult time finding a physician to take them on as adults," Robinson added.
Robinson asked Humphries to coordinate a task force that would identify benchmarks and evidence-based practices for the treatment of adult patients with sickle cell, and develop a clinical pathway that could be used throughout the hospital.
Humphries took the lead of a team that included a hospitalist from each of the three hospitalist groups that care for patients at Harris Methodist Southwest; six registered nurses, half of whom work on the fourth floor med/surg unit that cares for patients with sickle cell disease; the chaplain; a dietitian; and the social services department.
"It was a real multidisciplinary group, and we kept them involved in the protocol itself," Humphries said. "Our clinical pathway involves chaplain referrals, social service referrals, physical therapy and dietary as needed. There's also a big education component. We have really worked to streamline the care [for patients with sickle cell disease] and make their care consistent."
The team started by looking at national guidelines, and focused on protocols at The Georgia Comprehensive Sickle Cell Center at Grady Healthy System in Atlanta, as well as recommendations from the NIH. They took what they learned and developed an evidence-based clinical pathway tailored to the hospital's size and resources.