Adapted from Winter 2013 Duke Nursing Magazine
Remember the worst headache you’ve ever had.
“Multiply that times 100, and you get an idea of sickle cell pain,” says Darryl Smith’T90. If Smith visits the emergency department in a sickle cell pain crisis, he’s already spent at least an hour trying to control the stabbing pain with the prescriptions in his medicine cabinet. He will need a serious dose of intravenous pain medication.
The most common inherited blood disorder in the United States, sickle cell is most prevalent among African–Americans and is caused by a genetic defect in hemoglobin. The defect causes red blood cells to form an abnormal “c,” or sickle shape, which prevents those cells from easily passing through small blood vessels. When they accumulate and form a blockage, they can cause tissue damage and unbearable pain; some have described it as feeling like all their bones are breaking.
On the emergency department triage list, such patients are ranked just one position below people with an immediate life-threatening condition, such as a gunshot wound. But at times, Smith has sat in the emergency room for three hours or more, waiting. “You rock, you hum. If you can go to sleep, you do that. You just stay there in pain until you get seen,” Smith says.
It’s a story that Duke School of Nursing associate professor Paula Tanabe has heard over and over and she wants it to change. In 2011, Tanabe was awarded a three-year, $865,365 grant from the U.S. Agency for Healthcare Research and Quality to apply evidence-based guidelines to improve emergency-room care for people with sickle cell disease.
For more than two decades, Tanabe has focused on helping patients in pain. Her 1995 PhD dissertation showed that pain was the main complaint of 70 percent of emergency room patients, but the only factor that was linked to getting treated was having chest pain.
“We had a perception before that we couldn’t treat pain because we were going to make people addicted. I’ve always fought that myth and said that we need to listen to the patient, and we need to treat their pain,” Tanabe says.
In the years since her dissertation, Tanabe saw big improvements in pain treatment in the emergency department -- except for people with sickle cell. “To see pain management get better, but not for this population, that really frustrated me,” she says.
Tanabe says there are several reasons behind the poor treatment patients with sickle cell receive in the emergency department. Overcrowding is one. “Overcrowding is very real. Sometimes patients are going to have to wait,” she says.
But racism and lack of education about the disease play a role too, she charges.
Studies have shown that a high percentage of doctors and nurses have the perception that many patients with sickle cell are addicted to opioids (63 percent of nurses surveyed believed this in one study). But rates of addiction among sickle cell patients are no greater than the rates of addiction among the general population.
“I see these patients being selected out, and they’re not getting care because we have a perception that they’re addicted,” Tanabe says. “Having been an emergency department nurse for over 25 years, I know that if you want a bed for somebody, you go find one. Some of it has to start with, 'I need to find you a bed.' And if I think that you’re just addicted, my effort isn’t going to be so good. I’m going to let you sit there.”
Health providers receive special education about caring for hypertension and diabetes, but not often about sickle cell disease. Yet sickle cell is life threatening. The average life expectancy for men with the disease is age 42; for women it’s 48. “The crux with this whole disease is a problem with the hemoglobin, and hemoglobin delivers oxygen to every part of your body. So in the end, every part of your body can have organ damage,” Tanabe says. “It’s this really complicated disease that health providers don’t know too much about.”
“Sickle cell is the most prevalent genetic disease among African Americans in this country, but we don’t talk about it,” Tanabe says. “Why is that?”
Tanabe's new project will operate at Duke University Hospital and Wake Forest Baptist Medical Center in Winston Salem, NC, focusing on improving four areas of care—triage upon arrival, pain management, follow-up medical care for high-risk patients, and referral of patients for support services.
If emergency department providers learn more about sickle cell disease, and about the lives of people who suffer from it, they may be more likely to find creative ways to help. Smith, for instance,has a wife, a German shepherd, and a job as a pharmaceutical salesman that he wants to return to. But caregivers in the emergency department don’t know any of that. All they see is that he’s African American and is asking for a high dose of pain medication.
Tanabe’s final advice for caregivers is simple. “Just talk to these patients and hear their stories,” she says. “They’re just people.”
For more on this story, please go to Page 15 of Duke Nursing magazine, Winter 2013. http://nursing.duke.edu/sites/default/files/alumni/magazine/1203_dukenursing_lorez.pdf