Around one-third ICU survivors get PTSD, but diaries offer hope for recovery

Being pulled back from the brink of death can leave both physical and mental scars, but researchers hope they’ve found a way to soothe some of the suffering.

The medical intensive care unit (ICU) of Johns Hopkins Hospital in Baltimore sits high in a glass tower named after benefactor Sheikh Zayed of the United Arab Emirates. This is where the hospital’s sickest patients come when the emergency room can’t do enough to keep them alive.

“Our patients may typically come in with severe infections, like pneumonia. They may have kidneys, liver, lungs that don’t work very well due to chronic illness or things like drug and alcohol abuse,” said Dr. Dale Needham, Medical Director of Critical Care Physical Medicine and Rehabilitation Program at Johns Hopkins University.

Teams of doctors, nurses and specialists throw everything they’ve got at critical illness in the ICU. Patients undergo a barrage of life support techniques, from a breathing tube and mechanical respiration to eight-inch-long “central lines” – tubes inserted into arteries in the neck, groin or clavicle to deliver life-saving medications. Patients are frequently sedated during these procedures. In spite of these efforts, between ten and 20 percent of patients admitted to most ICUs in the United States die.

For patients, the trauma of being close to death – and the invasive treatments required to pull a patient back – leave an emotional scar: post-traumatic stress disorder. “PTSD symptoms are quite common in ICU survivors. They might be as common as PTSD symptoms after active combat, or after sexual assault,” said Needham.

Different ICU’s used different scales, but 24 to 42 percent of ICU survivors surveyed in a meta-analysis earlier this year reported symptoms of post-traumatic stress disorder.

These symptoms include intrusive memories, trouble focusing, anxiety and depression. Some experience cognitive deficiencies. And these effects last. Needham says that’s a huge setback for patients in recovery. “The impacts of PTSD are very clear – patients have a worse quality of life.”

Nightmares, dreams and visions

Garfield Griffin knows that first hand. Three years ago, Griffin was 39 – happily married, putting in long hours as the manager of a grocery story, and raising his son Gavin.

“I could hit the gym at six, go to work at seven-thirty, get off at six-thirty, hang out with my son, throw a ball around and get up and do it all the next day,” said Griffin.

Then Griffin got sick. “It was May 27th, 2011. I just thought I had a bad cold, or maybe the flu. I’ve heard of people going through pneumonia but I’ve never heard of anybody going through what I’ve gone through.”

Griffin spent three and half weeks in a Prince George’s county intensive care unit, battling severe pneumonia. Doctors put a breathing tube down his throat and heavily sedated him, both practices associated with post-traumatic stress.

While there, Griffin – like many ICU survivors – became delirious. “I started to have nightmares, dreams, visions of everything you could possibly imagine. I had visions of kids running around with animal heads. I saw blood circles, dark red blood circles dripping blood.”

These visions extended to what was happening to Griffin’s body. “I don’t mean to be too drastic but I thought that somebody had cut my penis off,” said Griffin. “I thought that the people who were caring for me, weren’t. I thought they were trying to kill me.”

Sick and scared, Griffin tried to fight back. So, the staff restrained the former football and basketball player, tying his wrists down. “They actually had me locked down to the bed because I don’t think I would allow anybody to touch the breathing tube at some point in time.”

Lucky for Griffin, he recovered from pneumonia. But, he couldn’t shake the bad memories of what had happened to him in the intensive care unit. Back at home, Griffin had trouble putting his life back together.

He took a year off of work. His marriage faltered.

“I didn’t see my way out of it. It’s like you’re in a funk. How am I going to get up to do anything when I can’t even see myself getting better, I can’t see myself breathing better, I can’t see myself getting stronger.”

During that year, Griffin decided to talk to a therapist. Through Johns Hopkins, he joined a support group for people with post-traumatic stress disorder. There he heard stories that helped him feel like his experience was normal. “There were other people who never made it back to work just because not being strong enough, just the post-traumatic stress and anxiety of getting sick again,” said Griffin.

Now – three years out of the hospital – Garfield credits therapy with helping him reframe his memories and get back to work.

“This diary is being written to help you understand what’s happening to you…”

Back at Johns Hopkins, Needham and his colleagues want to prevent PTSD in the first place. “The only intervention that was shown to reduce PTSD is ICU diaries,” said pulmonary and critical care fellow Ann Parker.

The diaries, kept by friends and family, describe what happens to a patient in the ICU. They include pictures and document the exact sequence of care, as well as how patients respond that care. That way when patients recover, they have a clear picture of their care – written by people they know and trust.

Here are some excerpts from an example from the United Kingdom: “This diary’s being written to help you understand what’s happening to you…You’d been vomiting the day before and had pain in your abdomen…Your condition deteriorated, and you were found to stop breathing and needed resuscitation…You became exhausted and your doctors realized you needed a breathing machine… You managed to have an hour off the breathing machine but you were really struggling to breath…You went back on the ventilator. They really knocked you out and you slept for most of the afternoon…”

ICU diaries are common practice in Northern Europe but hospitals in the United States have been slower to adopt the technique. Johns Hopkins Hospital will launch it’s own pilot ICU diary program by the end of this year.

As for Griffin, he says he’s moved on – but now doesn’t take his life for granted. “There’s not a day goes by I don’t think about it, to be that close to death… it makes you appreciate life more.”

For more examples of ICU diaries from European hospitals, visit icu-diary.org.