Linda Humphries would see them arrive at the hospital in severe pain, stay for weeks hooked up to their IVs, and leave, only to return and go through it all over again. And again. They were adult sickle cell disease patients in crisis, and the care they were getting wasn't good enough or consistent enough.
This went on for years, until the day Humphries, a 53-year-old critical care nurse at Texas Health Harris Methodist Southwest Hospital (THMSW), was asked to head a task force on improving care in this difficult population and shortening their hospital stays. The problem was, although Humphries had years of experience in the ICU and working with diabetes patients, she knew very little about managing sickle cell disease.
"We had people with severe joint pain in the ankles and knees. We had a gentleman in his early 20s who'd had a stroke," Humphries said. "Some had psychosocial problems; some developed drug addiction, addicted to pain killers."
The patients, mainly in their 20s and 30s, would wait for hours in the ED for relief. Those who were admitted remained in the hospital on IV pain medication for as long as 30 days.
"Most people associate sickle cell disease with children," said Humphries, "and most pediatric hospitals have good clinics that follow patients until they're 18. But these patients outgrew children's hospitals and don't have a primary physician. This population uses the ED for primary care, and they're complicated patients."
CHANGE AT THE INSTITUTIONAL LEVEL
Humphries and a multidisciplinary team at THMSW collaborated with their counterparts at Harris Methodist Fort Worth Hospital to develop a treatment protocol for adults with sickle cell disease and to teach them to manage their condition.
Traditional management of sickle cell disease involves rehydration and the management of severe pain, followed by helping the patient return to normal activities. The protocol developed by the team tries to get patients rehydrated and onto oral pain medication quickly, starting with treating the pain aggressively as soon as they show up in the ED.
"If they sit in the ED for hours waiting to be seen, their pain will escalate and it will take a long time to get the pain controlled after they're admitted," Humphries said.
When patients appear in the ED with sickle cell symptoms, the physicians order laboratory and other diagnostic test work to verify that the patients are in a crisis. Serious secondary issues are addressed immediately.
"If there's a crisis and they're truly sick, they're at risk for a stroke or long-term heart problems. We want to make sure that's ruled out," Humphries said.
While patients are in the ED, IV fluids are started to rehydrate them and they're given a significant dose of pain medication. If they're admitted, they're put on patient-controlled analgesia. The case managers and clinical nurse specialists teach the patients about the factors that are likely to plunge them into crisis, such as increases in activity or stress or changes in temperature that cause dehydration; even the flu can trigger a crisis. They're also taught how to address a crisis quickly themselves, so that the disease becomes manageable.
CASTING A WIDER NET
Humphries had originally been asked to look specifically at her own hospital. However, several months after the changes were implemented at THMSW, Humphries "realized that this issue was bigger than just our own hospital." She met with people at the county hospital and the Sickle Cell Disease Association of Tarrant County.
"From that meeting we expanded to involve other area hospitals, Cook Children's Medical Center, the Texas Department of State Health Services, and the public health department. What shocked me more than anything was that the sickle cell association wasn't aware of this problem, of the lengths of stay and inconsistencies in care."
Humphries estimates the adult sickle cell population in Tarrant County at between 500 and 600. Before the new protocol, some 200 to 300 came to local EDs annually; using the data she had at THMSW, Humphries determined that the annual inpatient costs at all of the hospitals in the area were between $1.5 million and $2 million.
"The problem is we just don't have a clear picture of how many adults with sickle cell live in the Tarrant County region."
WHY STOP THERE?
The number of patients admitted to THMSW did indeed decrease dramatically as a result of the ED protocol. And Humphries and her colleagues could have stopped there, but they wanted to address the problem of patients going from one hospital ED to another. They needed patients to be treated at one facility, seen on a consistent basis by the same health care team. That's when they started to look at the feasibility of developing a clinic.
"The idea of the clinic came when I started researching what others around the country were doing to manage adult sickle cell patients," she said. "I was able to contact many of the clinics and speak with the directors or nurses there to see how they operated. Our dream was that when they came, they'd get treatment right away."
At a sickle cell disease symposium, Humphries met Elie Choufani, MD, who was affiliated with John Peter Smith Hospital, the county hospital, and told Humphries he had run a clinic in Boston.
"He was appalled we didn't have one here," she said. Choufani then offered to ask his hospital to open one.
"If I'd had dentures instead of my own teeth, they would've hit the floor," she said with a laugh. "Here he came, like an angel, and all of a sudden our focus turned to working with him."
JUST DOIN' MY JOB
The sickle cell clinic, located at the John Peter Smith Center for Cancer Care, began operating in February, "a lot sooner than any of us anticipated," Humphries said. Choufani is its medical director.
Humphries still sees all the sickle cell patients who come to THMSW, but she can now refer them to the clinic. She doesn't like to take credit for everything that's happened. She describes her role in this process as that of facilitator, the person who got the word out, got the ball rolling.
"The city coming together like it did to improve sickle cell care is one of the most rewarding things I've ever been involved with," she said. Of the task force's accomplishment, she says, "It was my first adventure outside the walls of a hospital. It was a neat thing."-Patrice O'Shaughnessy