The phrase “working twice as hard for half as much” is one that sadly rings true for many patients who have had significant stays in an intensive care unit (ICU). Surviving a lengthy critical care experience can result in depression, weakness, fatigue and other cognitive and physical deficiencies.
“These patients tend to fall between the cracks in service provision,” said James Jackson, Psy.D., research associate professor of Medicine at Vanderbilt University Medical Center (VUMC). “They are rarely referred for psychiatric care and there usually aren’t support groups for them like there are for cancer or stroke survivors. Nothing is available for these folks, even though the problems they have are quite acute. Isolation is an issue with these patients, and many times their medical providers aren’t dialed in.”
VUMC is among 17 medical centers in the United States offering an ICU support group for adults funded by the Society of Critical Care Medicine initiative called “THRIVE.”
“It’s designed to help ICU survivors not only survive, but take it a step further, to thrive,” Jackson said.
Support groups, the initiative indicates, are one of the best ways to offer the group the help they need. VUMC’s group, which began in October 2015, meets once a week for an hour at West End Community Church off White Bridge Road in Nashville. Participants range from age 40 to 70.
More than 5.7 million patients are admitted to ICUs in the United States each year.
A study, authored by Jackson in 2014 and published in The Lancet Respiratory Medicine, shows that depression affects more than one out of three survivors of critical illness, and the majority of patients experience their symptoms physically rather than mentally. It was one of the largest studies to investigate the mental health and functional outcomes of critical care survivors.
Weakness, appetite change and fatigue — all signs of somatic, or physical, depression — were present in two-thirds of the patients, as opposed to cognitive symptoms such as sadness, guilt or pessimism.
“The literature shows that people who have been traumatized by an ICU experience don’t want to come back to the hospital where it happened for meetings. That’s why we decided to have this meeting offsite,” Jackson said.
There is no agenda at the weekly meetings, but it doesn’t take long for several primary themes to emerge once the discussion starts, Jackson said.
At a recent meeting the participants introduced themselves and told about their varied ICU experiences.
“I’ve been in and out of ICUs as often as my daughter goes shopping,” one participant said.
Melissa Akers, who spent 44 days on a ventilator in 2009, compared her recovery to “riding an old wooden rollercoaster — really rough and pretty harrowing.”
Trying to perform simple daily activities felt like “climbing out of a hole,” she said. Once, she made pasta and spaghetti sauce, a simple two-step process, but forgot to boil the noodles. “My brain felt like I was trying to unscramble an egg,” she said.
Another participant, Val Lawrence, said she wants to “be a force to be reckoned with, like I was before.”
Lawrence, who spent several weeks in Vanderbilt’s ICU, said she remembers bits and pieces of her stay, including her nurses praying with her. She said that although she was relieved to be leaving the hospital she was also faced with a sense of mourning.
“It was a loss, leaving those people who cared for me 24/7. I’ve been back to the ICU to reconnect with the people who had my life at their fingertips.”
The support group is a place where feelings can be safely shared with others, said Erin Holm, MPH, research analyst II
“The group members push past their comfort zone a little to try to rewrite their narrative. Instead of saying ‘I’m disabled. I can’t do what I used to do,’ we help them reframe this into a positive statement.
“People at all levels attend the support group, and people who are doing well can be role models for those who are struggling,” she said.
Family members are also encouraged to attend the support groups.
“Many of these patients have feelings of guilt about being a survivor and having to be taken care of,” Holm said.
“We’re hoping to improve outcomes with these support groups,” Jackson said. “We hope that people aren’t simply going to come and engage and get supported, but along with that, they’ll improve, be able to take risks they weren’t willing to take before, regain their confidence, learn to talk about their issues openly, and learn to engage family members in a different way.
“We hope they are less depressed because they’re in a community of people with the same issues.”
Vanderbilt’s Thrive Support Group is open to individuals who have experienced serious, life-threatening illness, either at Vanderbilt or elsewhere, or their family members. Interested providers or individuals can email Jackson for more details at james.c.jackson@vanderbilt.edu.
