Epilepsy monitoring units (EMUs) are critical in helping to diagnose uncontrolled seizures and to devise effective management plans. But complications, including several deaths, at these centers have raised concern that there may be too much variability in the practices of different centers. A panel of experts has been studying the issue for two years and presented preliminary findings at the annual American Epilepsy Society (AES) meeting in San Diego, on Dec. 6, suggesting that these hospital-based units may need national standards of care to ensure that patients being worked up for epilepsy will not be harmed in the process.
Gregory L. Barkley, MD, clinical vice chair in the department of neurology at Henry Ford Hospital in Detroit, MI, said that nurses informally began reporting safety concerns on these units, including falls and other injuries. A study group was organized to determine which factors could put patients at risk on these units — and why. The work group is developing recommendations that could help reduce the risk for harm.
Dr. Barkley and his colleagues developed two surveys in March 2007, one for physicians and another for nurses. They concluded that the variability in practice was a real issue, with no consensus about patient management on these units. Thirty-nine of 105 nurses and 157 of 1,500 physicians, all members of the AES, responded to the survey.
The survey revealed that half of the patients arrived at the EMU on lowered doses of anti-epileptic medication, raising the possibility that some patients may have had seizures before they were even admitted to the unit. The presumption is that patients lowered their medication doses on the order of their physicians, Dr. Barkley said.
One-third of the physicians said that they did not have continuous monitoring of the patients by the nursing or EEG staff, which could be a problem if the patient were having a seizure without a health practitioner around to control the seizure and protect the patient. “If no one is watching, it can lead to harm,” Dr. Barkley said. The nursing survey showed that 75 percent had no written protocols for the treatment of status epilepticus.
Last month, in preparation for this AES meeting, a third survey was sent out and responses were obtained from 70 epilepsy centers. About half of the centers had at least five beds dedicated to in-patient epilepsy monitoring. Three quarters of the centers have more than 100 admissions a year, both adults and children.
According to committee member Paul Levisohn, MD, associate professor of pediatrics and neurology at the University of Colorado, this latest survey also showed variations in practice related to seizure precautions, patient activity during monitoring, the level of observation and care, and medical management.
Seventy-four percent of responding centers said that they had no fixed protocols for the speed of medication withdrawal after admission and tapered each patient on a case-by-case basis.
The percentage of monitoring units without continuous supervision ranged from 24 percent to 31 percent in the three surveys. More than half of the centers reported that they had admitted at least one patient with post-ictal agitation in the previous year, and that staffing was inadequate to the task of provoking and monitoring seizure activity.
WORKING ON SOLUTIONS
The 10-person AES committee was broken down into four work groups, each comprising about a dozen clinicians, with each group taking on an issue to identifying gaps in patient care. All groups assessed the safety concerns on these units — including, for example, how teams provoke a seizure in a safe environment, the best way to respond to a seizure, and environmental issues such as the layout and design of the room, furniture (whether bed rails should be raised or lowered, for example, or padded), and bathroom.
“This is the beginning of something that I think will be important,” said Janice M. Buelow, PhD, RN, who organized the surveys. In discussing the findings in a conference phone call, she said the inconsistencies they identified in the survey data include decisions about when to begin tapering doses of medication — before or after the hospital admission; allowing patients to walk around; go to the bathroom unaided; and even exercise, when they at risk of having a seizure at any moment.
“One of the questions is why there is so much variability,” said Dr. Barkley, associate professor of neurology at Wayne State University. “There is a lack of coordination of a real plan of action.”
For one thing, Dr. Barkley added, the group agreed that in an ideal situation, the patient should not be taken off the medication before admission to the unit. The problem is that some patients are boxed into a short window by an insurance plan and the team has to be able to provoke and record seizures during that limited time, he said.
The National Association of Epilepsy Centers does have guidelines but adherence is voluntary. The association is updating the guidelines to include more information about the safety concerns, Dr. Barkley added.
The committee reported that patients unattended during a seizure can pull out electrodes surgically implanted in the brain, fall or injure themselves in any number of ways. They also reviewed the layout of the monitoring units and questioned whether or not patients should have bed rails up to protect them but then they raised the possibility that the patients might be entangled in the rails during a convulsion.
Panel members recommended that neurologists do their homework before sending a patient to a center for extensive monitoring. Patients generally stay for three to seven days. Patients should also ask these questions: When does the team begin to cut back medication? Do they observe the patient continuously? Can patients walk the floors unattended? Do they allow unsupervised exercise? Is the environment safe enough to protect them in the case of a fall? How do they manage a seizure once it starts? How do they monitor?
Dr. Barkley said that at Henry Ford Hospital, about 40 percent of patients need additional monitoring with implanted electrodes, which means a trip to the operating room, before a decision on epilepsy surgery can be made.
The group is developing a list of solutions to the safety concerns and will present the recommendations to the epilepsy community for feedback. They will also publish their findings. Proposals being discussed include daily checklists for patients with scalp or implanted electrodes, written medication plans for seizure abortion that are clearly displayed, minimum levels of staffing for seizure observation personnel, and emergency plans outlined and posted on the unit.
The group also recommended changes in the design of rooms that is meant to prevent injuries. Care should be taken to keep rooms free of clutter such as cables on the floor. Exercise equipment should be low to the ground such as recumbent bikes to minimize injuries. Rooms should be designed to minimize hard surfaces by the use of cushioned furniture, floor pads, and recessed fixtures as much as possible within the regulations for infection control. Proper resuscitation equipment such as suction devices and oxygen delivery systems should be available.
Among other recommended changes, the group proposed that the EMU team should take into account a person's seizure history and patients should always have IV access in the event that the patient needs immediate treatment to stop a prolonged seizure. The team should be in agreement on how long to wait until treatment is given following a seizure or a cluster of them. Teams must also be aware of the high rate of cardiac complications in hospitalized epilepsy patients. Some studies have shown up to 43 percent of patients have an arrhythmia during a seizure. Other heart problems occur but are less common.
There is consensus among physicians and nurses who work in EMUs that there should be round-the-clock observation by trained heath care staff. The challenge is finding the resources to staff monitoring units properly when financial constraints are imposed on clinicians and hospitals by insurance companies. Group members said they are committed to continue research, education, and training to make epilepsy monitoring units as safe as possible.
See www.neurotodayonline.com for the Aug. 21, 2008, story, “Death in Epilepsy Monitoring Unit Raises Questions About Safety Policies and Practice Standards.”
ARTICLE IN BRIEF
A panel of epilepsy experts described preliminary findings from surveys of physicians and nurses on epilepsy monitoring units, suggesting that these hospital-based units may need national standards of care to ensure that patients being worked up for epilepsy will not be harmed in the process.