Survival can seem like the only goal during a stay in a hospital’s intensive care unit. But for many patients, the aftermath can be just as harrowing. Now, an international initiative has launched support groups designed to help those who have left the ICU — if they can be persuaded to come in and talk about their struggles.

“There’s this broad world that exists between surviving and recovering,” said Dr. Daniela Lamas, a critical care doctor who works in the ICU at Brigham and Women’s Hospital in Boston.

Some patients return home disabled, unable to work or even care for themselves. Others are traumatized by being put on life support. Caregivers struggle, too; they may still be reeling from days or weeks fearing the worst. Doctors have given those symptoms an umbrella diagnosis: post-intensive care syndrome, or PICS.

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“It evolved from, ‘I’m so excited to be home, I can’t wait to eat,’ into, ‘Oh, my God, what am I gonna do? I need to make a living and I can’t work,’” said Rob Rainer, who spent four weeks in a medically induced coma in a New Hampshire ICU.

An estimated 5.7 million adults are cared for in ICUs in the U.S. each year. About 1 million of those patients require mechanical ventilation to control their breathing — which can be both mentally and physically traumatic. Physicians also suspect that the chaotic atmosphere of an ICU — the bright lights, clanging alarms, and high-stakes interventions — can leave patients deeply disturbed even after they’re discharged.

So the Society of Critical Care Medicine, a nonprofit group for ICU providers, doled out $5,000 each to five hospitals in 2015 to help the facilities launch support groups, with the dual goal of assisting patients and informing research. There are now 17 support groups spanning the globe, from a VA center in Nashville, Tenn., to a university hospital in London.

There’s just one problem: They’re struggling to get survivors and caregivers to show up.

“We’ve had trouble getting a lot of people to come on a regular basis. And by a lot of people, I mean people,” Lamas said.

It’s a similar story across the country. “The recruitment has been very difficult,” said Adair Andrews, who works for the Society of Critical Care Medicine and helps run the program. Sometimes, the doctors and counselors running the groups just sit and chat with one another, leaving tables full of bagels, orange juice, and coffee untouched.

The lack of participation doesn’t necessarily mean patients aren’t in need — in many cases, they just don’t know to look for the resources that now exist.

“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,” Lamas said. Part of the problem, she said, is that people often seek out resources for a condition or injury, not an experience. They might attend an advanced cancer support group, or search for resources for surviving sepsis.

“People don’t necessarily define themselves as survivors of the ICU,” she said.

“People don’t necessarily define themselves as survivors of the ICU.”

Dr. Daniela Lamas

For Rainer, it was pneumonia that put him in intensive care. Specifically, necrotizing bacterial pneumonia, which took hold in January 2015. His organs began to shut down. Doctors put Rainer, now 54, into a medically induced coma. His wife, elderly parents, and three children sat by his side, hearing many days that doctors weren’t confident he’d make it through the next.

His family’s ordeal hit Rainer once he was discharged after two months — and with it crept in a sense of guilt, followed by deep anxiety about money. Rainer was a lawyer, but now couldn’t work. As he tried to recover his strength and mobility during rehab sessions at home, he panicked about his family, his finances, and his future.

“I started to realize the circumstances I was going to have to live in because of my experience,” said Rainer, who at times speaks softly and much more slowly than he once did. He believes the change is due to oxygen deprivation during his ICU stay. When he arrived home, he couldn’t walk very far. He couldn’t make it to the bathroom by himself at night. It was two months before he was strong enough to shower.

“That first shower was excruciating,” he said.

He needed help coping with his PICS — but he had no idea he had the condition. Even if he did, he wouldn’t have known where to look for resources.

“I had just come out of this crazy experience,” he said, “and there was no resource for me to go to talk about some of the things I didn’t understand.”

It was only when a friend’s wife’s sister — who happened to be a critical care doctor — introduced him to Lamas that his confusion about his symptoms began to unravel. The fact that it took such a circuitous connection to meet a doctor who knew about PICS is a problem, Rainer said.

“I had just come out of this crazy experience, and there was no resource for me to go to talk about some of the things I didn’t understand.”

Rob Rainer, patient

“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. It’s critical for ICU staff at every hospital to be well-versed in PICS to prepare patients, he said.

Rainer is one of just a handful of patients who has attended the group led by Lamas.

One obstacle: It’s tricky to track down potential participants. In the ICU, there’s a crisis around every corner. When patients and families are so focused on surviving another day, there isn’t necessary a good time for a tough talk about what comes next.

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

And after the ICU, many survivors go back to seeing their primary care doctors, occupational therapists, or specialists for their specific condition; those providers might not have the training to recognize ICU-related trauma.

There are logistical hurdles, too. Some patients live hours from the hospitals where they were treated. It may also be psychologically tough to return: In some cases, doctors have chosen to hold their support groups in coffee shops or restaurants, because patients are too traumatized to return to the hospital.

For others, the very challenges that warrant support make it hard to get to a support group — the walk from a parking lot into a hospital might be too tiring, for example.

Some groups have tried brochures to draw in new patients, while others doctors have brought the meetings up in follow-up visits with patients.

At Mayo Clinic in Minnesota, support group organizers waited each meeting for someone to show up. Month after month, the rooms were empty.

“We’d think, ‘OK, next month, next month,’” said Annie Johnson, a nurse practitioner at Mayo Clinic who started the hospital’s support group. And then finally, a patient’s wife came. But with just one attendee, it wasn’t a support group, per se — it was just a caregiver and an ICU provider, talking about what to expect in the coming months over a cup of coffee.

Johnson said she isn’t taking the slow start as a defeat. Instead, she and others are exploring new tools for outreach, such as an online support community for ICU survivors and their families. It’s done well: Even critical care nurses and doctors join the online conversation.

One patient shared the story of her five-day stay in the ICU battling sepsis and kidney failure.

“I was sometimes halfway aware of my surroundings, or activities happening to me and around me,” she wrote in a post. Her husband struggled to come to terms with what was happening as she waded in and out of awareness. Now, after a liver and kidney transplant, things have settled down a bit.

The wife of an ICU survivor replied to that post. She said she found it reassuring to hear another person’s experience, and wanted to know how to better help her husband after his own health scare.

She asked a simple question: “Other than the passing of time, what helped you get past it all?”

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  • My husband was in icu for 3 months and sedated and paralyzed for 4 weeks on a ventilator then had a tracheotomy. Had influenza A and acute respiratory distress disorder, ulcer and kidney failure. He is home now with 14% kidney function. His problem is he coughs a lot and spits up phlegm not from his lungs but his stomach. He is getting very little sleep and no one came explain what is causing it or how to stop it. We need advice! What type of doctor should we see?

  • I was in a medically induced coma for almost four weeks following sepsis from an infected Gall Bladder in 2010. I was never informed about any possible cognitive issues by any of my doctors. While in the coma, I believed that I was being tortured 24 hours a day. When I was sent home, I had many issues, some of which I still have almost ten years later. Because of physical damage that I did to myself while I was restrained in the coma, I will never be able to return to my former work as a musician, or any other work for that matter. My HMO refused to even look at my physical injuries for many years, and just diagnosed me with PTSD two years ago. They offer group sessions to help diagnose PTSD, but I am still at least three years away from even being put on on a waiting list for actual treatment. The only reason that I am still here is that I promised my long suffering wife that I wouldn’t take my own life.
    I just found out that I wasn’t the only one experiencing this a week ago. I have been saying all along that I feel like I am a different person than I was before. I drove away any friends that I may have had years ago. I have been looking for help coping with this for almost ten years to no avail. Are there any support groups in the U.S.? Any suggestions about who I might be able to get information from?

  • I would like to know where some of these support groups can be found, either online or a physical meeting. I am an ICU and sepsis survivor and am still struggling with some issues. The only thing I’ve found that has any information and participation from patients is based in the UK.

    • Try the ICU were in for starters. I work in a UK ICU we have local meetings for patients, a follow up clinic and a staff psychologist for our patients – your local unit may have contacts.

  • In 2014, I was put in a medical induced coma. I was in it for almost 2 months. My life has been a nightmare since. I was invited to Dr. Lamas group twice. But never heard back from her. I look in the miroor and still have no idea who I am. I just glide through the days.

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