- The ICU is a scary place for patients and their family caregivers. Patients are a mess of wires and medications, facing what is often a life-threatening condition. Providers are working to treat patients to save their lives in a way that will maintain a high quality of life, and family members are worried about their loved ones’ health outcomes. Patient education is essential here, but too often falls short of patient and family needs.
When patients are facing these critical illnesses – and when their family members must watch patients fight the illness – it can be a truly terrifying time. And although there are elements of these serious care encounters that are unavoidably scary, healthcare professionals can take steps to reduce unnecessary stressors.
Patient education is a key step in doing so, according to Kumiko O. Schnock and Priscilla Gazarian, two researchers from Brigham and Women’s Hospital in Boston. But between the hustle of the ICU and the many patient issues providers are trying to address, patient education often falters.
“Healthcare providers know patient education is very important, but other times sensitive things are going on, especially in a busy ICU environment, and the nursing workloads are really high in ICUs,” Schnock said in an interview with PatientEngagementHIT.com. “They can’t spend too much time to just dig into the educational information for the patient.”
The problem isn’t that there isn’t any type of patient education content geared toward the ICU setting, Schnock and Gazarian found during a recent investigation on the topic. The issue is that this content is not standardized and not located in a central location. Fragmented patient education material has proven nearly as unuseful as if there is no education material available at all.
Schnock and Gazarian’s research – funded in part by the Gordon and Betty Moore Foundation and published in the December issue of Critical Care Nurse – showed that most hospitals have a plethora of patient education material available for patient and family consumption.
“We found that there was so much educational content available at individual hospitals, but they all use a different format,” Schnock said. “Some are paper-based pamphlets, and others are using electric databases. But that information is fragmented and nothing is tailored to the ICU patient. You have to find whatever information is relevant to the patient, and how nurses provide the patient educations are mostly depending on the nurses.”
But when that material is stored in different places in different formats, it’s hard for patients to obtain it. It’s often up to nurses to aggregate relevant information, and given busy nursing schedules this is an unrealistic ask.
Schnock, Gazarian, and the rest of the research team sought to streamline all of this information. Ultimately, the team wanted to standardize the content to make it available in other care sites, not just those involved in the investigation.
The framework, intended for digital displays, has three key components, the pair reported. These three sections – ICU Arrival, Understanding the ICU and Partnering in Care, and ICU Transitions – touch on key processes in the ICU.
ICU Arrival, for example, offers patients and family members relevant information about the ICU and hospital at large. Understanding the ICU and Partnering in Care reviews the different processes, equipment, and protocol used in the ICU.
ICU Transitions touched on the discharge process for patients moving on to a rehabilitation center. This section also reviews key information for patients who unfortunately are not recovering, an important part of the ICU that many providers usually miss, Gazarian explained.
“That last category is one that often gets missed in clinical settings until it's the day of transfer or the day to make a decision,” she pointed out. “Patients can't access the information ahead of time so they have to take it up very quickly.”
For example, issues such as end of life wishes and advance directives require time, consideration, and discussion amongst patients, family members, and providers. When the patient receives this information on her last day in the ICU, she does not have sufficient time to make an informed decision.
“In my own work I've been looking at how we can get information to patients around advance directives, and it's a very sensitive topic,” Gazarian stated. “The idea of having it on a web-based platform is appealing because patients are able to access it on their own time when they're emotionally ready. Advanced directives are not something that you want to just hand out to everybody without respecting the particular context that the patient is in.”
In fact, the standardized and digital format is helpful for all of the patient education materials.
“This framework offers patients and their families a point of reference at their own pace,” Schnock added. “Once patients have calmed down and have had time to learn about the treatment and their ICU hospital stays, the framework is there for better patient uptake of information.”
Ultimately, these efforts are about creating a better patient and family experience in the ICU, the pair stated. These stakeholders are looking for comfort during a trying time, and being able to offer informative material in an easy-to-use format is the least a hospital staff can do.
“Patients and families are in crisis, and information can really help them cope with the hospitalization better,” Gazarian said. “Right now, we have to rely on really fragmented processes and having information in disparate places throughout the hospital. It requires somebody actually obtaining and handing the information over to the patient. We would love to be able to develop this into a web-based portal.”
Gazarian and Schnock’s research is not done, they concluded. Going forward they are looking into ways to scale the patient education framework to more hospitals across the country. Finding a technology partner is the ideal way to do this, they noted, but funding is become an issue.
Once the pair and the rest of the research team identify strategies for overcoming these financial challenges, they hope that better patient education will improve the connection and relationship between patients and hospital staff.
“There's a huge amount of value in just making the information transparent and available to people in real time when they see the need to get that information,” Gazarian asserted. “It eliminates a barrier between the healthcare system and the patients.”