Post-ICU support groups exist, but no one's showing up. Here’s how Brigham and Mayo are trying to fix that

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9:00 AM - July 28, 2017

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Brigham and Women's Hospital, Mayo Clinic, and other hospitals and health systems have established provider-run support groups for people suffering from post-intensive care syndrome (PICS). But there's still one big problem: No one's showing up.

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About post-intensive care syndrome

The ICU can be a sad, stressful, and emotionally intense place. Tubes, alarms, and electronic monitoring devices abound, and heavily sedated—possibly confused—patients grapple with being on the brink.

Even when patients survive the ICU, their challenges are not over. 2015 study from Johns Hopkins Hospital found that nearly 25 percent of ICU patients suffer from post-traumatic stress syndrome. Hospitals and health systems—including Brigham and Women's, Beth Israel Deaconess, and Johns Hopkins—have adopted a variety of strategies to ease the ICU experience, such as by ensuring staff introduce themselves to patients and caregivers.

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And some hospitals and health systems have launched support groups for people with PICS, STAT News reports. According to STAT News, a not-for-profit called the Society of Critical Care Medicine (SCCM) in 2015 gave $5,000 each to five different hospitals around the world to help them launch such programs, with the goal of both providing support and "informing research."

 

An attendance problem

Across the United States, 17 of these support groups now receive funding from the SCCM—but many of them are having problems getting people to show up.

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As Daniela Lamas, a critical care doctor in Brigham and Women's ICU, put it, "We've had trouble getting a lot of people to come on a regular basis." She added, "And by a lot of people, I mean people." 

SCCM's Adair Andrews, who helps run the program, acknowledged the problem as well. "The recruitment has been very difficult," Adams said. In fact, physicians and counselors who operate the support groups sometimes end up sitting with only each other for the duration of a session.

 

Many patients don't know to look

The problem isn't that there's no need for these support groups, providers say—it's just that patients often don't know to look for them.   

Lamas explained, "For people to even look online for a support group assumes a level of knowledge about post-ICU that doesn't really exist among laypeople." Many patients, for instance, look up resources for others suffering from their specific illness or condition—such as others who've survived sepsis or cancer, for example—rather than searching more broadly for people who shared a similar experience in the ICU. "People don't necessarily define themselves as survivors of the ICU," Lamas said.

Further, when patients and families are in the ICU, they are focused on getting better—which means it's not a good time for providers to strike up conversations about what will happen post-ICU, STAT News reports.

 

"If the person's not dead, that's fantastic," Lamas said. "Thinking about what life might be like afterwards with nuance is really hard to do at the time when you're in the ICU."

 

In addition, providers may not be trained to identify PICS symptoms. And it can be hard for patients to attend a support group at the hospital where they received care--whether for logistical reasons, if they live hours away or are still dealing with physical injury, or for psychological reasons, if they suffered a traumatizing experience.

 

How hospitals, health systems are trying to increase attendance

Some hospitals and health systems have tried to increase awareness of PICS support groups through brochures or by having doctors mention the groups in their follow-up appointments with patients, STAT News reports. Others are hosting support groups at coffee shops or restaurants so that patients who feel uncomfortable returning to the hospital feel more at ease.

Annie Johnson, a nurse practitioner at Mayo Clinic who launched the hospital's support group, created an online support forum. According to Johnson, the effort has been successful so far: Although the forum is aimed at patients and their families, physicians and nurses who work in critical care also have joined the conversation. 

Rob Rainer, who spent four weeks in a medically induced coma at an ICU in New Hampshire, said it's critical that providers in the ICU reach out to patients. He realized he was struggling with PICS only after he was discharged from the hospital, but he wasn't able to articulate what his condition was, or find ways to address it, until a friend's wife's sister, a physician herself, happened to put him in touch with Lamas. "If not for that, I might very well still be struggling to understand what the heck was, is, and will be wrong with me," he said (Thielking, STAT News, 7/24; MacDonald, Fierce Healthcare, 7/24).

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