ED-based protocols speed care to sickle cell patients, reduce repeat ED visits, and discharge admitted patients earlier
Giving patients control over their pain medicines boosts patient and provider satisfaction.
Great strides have been made in the treatment of sickle cell disease, the inherited blood disorder that occurs most commonly in African-Americans. Patients with the disease used to die before reaching adulthood, but today many patients live well into their 40s and beyond. However, experts point out that sickle cell patients often have a difficult time getting the treatment they need when they present to the ED for care.
“Sickle cell disease is a chronic, life-long illness with acute episodes of pain that are really severe,” explains James Eckman, MD, director of the Georgia Comprehensive Sickle Cell Center at Grady Memorial Hospital in Atlanta. “When patients go into pain, they usually treat it at home, but when that doesn’t work, they tend to go to the ED, and EDs are really busy. The waits to get in and actually to be seen are often quite long.”
Another issue may then compound the suffering that sickle cell patients face while awaiting care. “These patients are primarily presenting with extreme pain but no other physical findings or lab changes to indicate whether or not they are in a crisis, so they are commonly not believed,” adds Eckman. “This is really one of the main issues that causes difficulty with the disease — not only for the patients because they are suffering from pain, but also for health care systems because they really have a great deal of difficulty dealing with these patients in the ED.”
Grady has eliminated this problem by creating an emergency clinic specifically for the management of sickle cell disease pain. It is open 24/7 so sickle cell patients who are experiencing a pain crisis can simply bypass the ED and go straight to the emergency clinic. “We offer eight hours of intensive treatment with pain relief and IV hydration,” says Eckman. “About 80% of the time that is adequate so that the patients can then go home on oral therapy. If it is not, and their pain is too great, then we admit them to the hospital.”
While most EDs do not see enough sickle cell patients to warrant a separate emergency clinic just for these patients, some hospitals have taken steps to optimize care for these patients so that they don’t suffer the indignity of not being believed, and they don’t have to wait two or three hours for the analgesic therapy and IV hydration they need to relieve their acute pain.
Implement a protocol
For example, Matthew Lyon, MD, RDMS, the director of the observation unit in the ED at Georgia Health Sciences Medical Center in Augusta, GA, has developed a protocol so that all sickle cell patients who present to the ED with pain will be sent directly to the observation unit for treatment as soon as any potential complications related to sickle cell disease are ruled out. The approach is designed to eliminate treatment delays and improve management of the relatively large population of sickle cell patients in the Augusta area.
Lyon, who has been fine-tuning the protocol for years, developed the approach because he observed evidence that many sickle patients were being treated as if they were drug-seekers when they presented with true pain crises. “Sickle cell patients kind of get lumped into that group of patients because they don’t exhibit pain the way you or I would,” he explains, noting that many of these patients have lived with pain their entire lives.
A sickle cell pain crisis typically lasts for 10 to 14 days, but what used to happen is that patients presenting to the ED in severe pain would be under-treated. “If you under-treat their pain in the ED, and then the pain goes on more than a few days, then they end up coming back,” says Lyon. “Then they look like they are seeking drugs when really they are just trying to find relief for their pain.”
To fix the problem, Lyon decided to use the observation unit as a tool to eliminate the opportunity for such judgments to impact care, and to standardize the way sickle cell patients are treated. As a result, the wait time for sickle cell patients who present to the ED with a pain complaint is now less than 15 minutes. “They are bypassing the normal processes because we know what is wrong with them, we already have a diagnosis, and we have already screened out most of the bad things, and so they are ready to be put on the treatment plan,” notes Lyon. “The quicker we can start them recovering from their pain, the quicker they can go home, which is really the goal — to decrease admissions and to improve their care.”
Give patients some control
Under the sickle cell protocol, the nurses in the observation unit will immediately start the patients on fluids, oral medications, and a patient-controlled pump for their narcotics. “That was an adjustment we made right at the beginning, and the reason for [the patient-controlled pump] is so that the patients can control how much pain medication they are receiving,” says Lyon. “They are not over-dosed or under-dosed, and they are not having to listen to someone tell them that they don’t really think they are in pain. There is no one making that determination except the patient.”
With the pump, the patients get a continuous infusion per hour, although the machine limits how much they can receive. “Generally what you will see is that when someone comes in with acute pain, they will be pushing the button fairly rapidly, perhaps five to seven times per hour,” says Lyon. “As their pain comes down, they may only push it two times per hour, and then as their pain starts being well-controlled, they might not be pushing the pump at all.”
When the patients stop pushing the pump, they are generally ready to go home, but it is up to them to make the decision that they can handle their pain on their own with oral medications. “What we have found is that our typical length-of-stay (LOS) for sickle cell patients is 16 hours,” says Lyon. “Most of the patients stay a little bit longer than they would in the regular ED. However, our admission rate with these patients is very low.”
Lyon aims for an admission rate that is below 15%, and he is generally able to keep it at about 12%. This compares very favorably to the 40% or 50% admission rate that results when sickle cell patients receive typical care in the ED, he says. “And there is a downstream impact, too. When our sickle cell patients are admitted from the observation unit, their admission LOS is about three days,” says Lyon, noting that the approach slices about two inpatient days off of what typically happens when sickle patients are admitted directly from a traditional ED.
While it can be difficult to provide these patients with the optimal dose of narcotics when they present to the ED with a sickle cell pain crisis for the first time, Lyon uses a database to track the care that each patient receives so that it can be used as a reference for future visits. “That allows us to give each of our patients an individualized dose so that every time they come in they will get the exact same dosage of meds,” says Lyon. “I adjust the dosages over time, but this takes a lot of the anxiety away from the patients because they know exactly what they are going to get every time they come in. They know what their situation is going to be and what is going to happen.”
Consider patient and provider satisfaction
Eliminating anxiety from the equation can only help these patients recover from their pain crisis more quickly, and they are also more satisfied with their care, says Lyon. “The providers are happier, too. Emergency physicians don’t have to feel like they are negotiating with patients,” he says. “This is taking a subset of patients and moving them into a controlled setting where the physicians don’t have to have any anxiety about under-treating or over-treating them. It is just part of the standardized pathway.”
What’s more, with the protocol in place, the nurses in the observation unit have become experts in sickle cell care just as they are experts in treating low-risk chest pain, another major pathway in the observation unit, says Lyon.
Roughly 50 sickle cell patients a month are treated in the observation unit at Georgia Health Sciences Medical Center. This is, in part, because Georgia Health Sciences University operates a comprehensive sickle cell center and clinic nearby, and this draws patients from surrounding communities. However, Lyon believes his specialized protocol could work well in other EDs that may not see large numbers of sickle cell patients or even have observation units. In fact, he is currently using grant funding to help EDs in other communities put his protocol in place.
“I am going to places that don’t have sickle cell centers to set this up because I believe this is the best way to treat people,” says Lyon. “It is best for the patients, but it is also best for the health care systems. It can save them a lot of money from [the avoidance of] repeat admissions.”
- Morey Blinder, MD, Associate Professor of Medicine, Washington University School of Medicine, St. Louis, MO. E-mail: firstname.lastname@example.org.
- James Eckman, MD, Director, Georgia Comprehensive Sickle Cell Center, Grady Memorial Hospital, Atlanta, GA. Phone: 404-616-3572.
- Matthew Lyon, MD, RDMS, Director, Observation Unit, Emergency Department, Georgia Health Sciences Medical Center, Augusta, GA. E-mail: email@example.com.
Study: Emergency providers can play a role in helping sickle cell patients transition into effective primary care as they reach adulthood
There is new evidence that people with sickle cell disease tend to rely more on the ED as they transition from pediatric to adult care. While sickle cell experts have observed this phenomenon for years, researchers at Washington University School of Medicine in St. Louis, MO, have unveiled data that strongly support this trend in ED utilization. The researchers analyzed the Medicaid data of more than 3,200 patients with sickle cell disease, and found that between the ages of 15 and 24, ED visits tripled in this group.1
Less clear is precisely why ED visits begin to spike in the later teen years, but experts suggest there are probably several contributing factors. “In some areas, the lack of adult providers is a big issue for sickle cell specifically, and in other places, insurance sometimes changes once a child becomes an adult, and that is an issue,” explains Morey Blinder, MD, a hematologist and associate professor of medicine at Washington University School of Medicine. “It is also possible that for some of these people their disease is getting worse as they age ... so all of these problems crop up at the time of transition.”
James Eckman, MD, director of the Georgia Comprehensive Sickle Cell Center at Grady Memorial Hospital in Atlanta, says there is no question that sickle cell disease tends to act up in patients as they enter their late teens and 20s, and that this is playing a role in driving up utilization of the ED, but he notes that a large number of patients also lose their insurance just as they begin to have new problems with their disease.
“Many of these patients are covered by Medicaid until they are 18, and then when they become young adults, they lose coverage and, therefore, become dependent on the ED for health care,” explains Eckman. “Also, there are really many fewer adult physicians who specialize in hematology related to sickle cell than there are pediatric physicians ... so all of these factors tend to increase utilization of EDs and increase the fragmentation of care, which is not only a burden on the health system, but also often leads to poor health outcomes.”
Develop ties with PCPs who have sickle cell expertise
Blinder adds that many teenagers with sickle cell disease form such strong bonds with their pediatric caregivers that they really don’t want to transition to adult providers. “What my pediatric colleagues call this is a failure to lift off. These patients just are not able to break those bonds very easily because they are getting good care,” he says. The result may be that these patients end up using the ED rather than connecting with a provider who can oversee their care over the long term, says Blinder.
Transitioning to a new provider is never easy for someone with a chronic disease, and both Blinder and Eckman suggest that EDs have a strong role to play in helping to connect sickle cell patients with a provider who has the skills and experience to manage their disease and overall care on an ongoing basis. “We have started to incorporate [ED providers] into our transition process, particularly for these patients who fail to lift off,” says Blinder. “Here in St. Louis, our ED has all the information that it needs to be able to help the transition along and put these patients in our adult [sickle cell] clinic. ED staff also have information on primary care physicians who are willing and able to take care of sickle cell patients.”
Similar efforts are under way at Grady Hospital in Atlanta. “Both the ED providers and the hospitalists who are discharging patients after they have been admitted really do have to develop some sort of mechanism to try and get these patients into primary care health maintenance activities and hopefully reduce their dependency on the ED,” explains Eckman. “We are trying to use primary care providers as a way of being able to partner these patients with ongoing health care, and then some of us who specialize in sickle cell disease are trying to figure out ways that we can support the primary care providers.”