Of 156 screened patients, 119 were ineligible, 4 surrogates and 2 physicians refused patient participation, and 8 patients died before interviews could be conducted (). The 23 patients enrolled were middle aged, mostly white, insured, and lived at home before hospital admission (). Most of the 24 caregivers were female and patients’ spouses. The patient cohort was diverse in terms of age range, treating service, and ARDS etiology. The median APACHE II score of 23 reflected patients’ moderately severe illness. Only 8 (35%) patients were discharged home from the hospital, while the remainder was discharged to post-acute care facilities. The median time between discharge and interview was 91 days (IQR 37-179 days).
Characteristics of Patients and Caregivers
Five central themes emerged from our analysis: pervasive memories of critical care, day to day impact of new disability, critical illness defining the sense of self, relationship strain and change, and coping ().
Hospital characteristics and outcomes of patients
Pervasive memories of critical care
Most participants (15 of 23) reported vivid memories of ICU experiences that persisted for months after discharge. Many pointed out the seemingly contradictory coexistence of general amnesia regarding their ICU stay with the presence of terrifying dreams, flashbacks, and vivid memories. One patient recalling mechanical ventilation said, “I have memories of jumbled thoughts…it was petrifying. I could hardly tell what was real and what wasn’t. This sounds like some kind of novel, doesn’t it? Was I dreaming it all?”
Predominant memories were related to physical restraints, endotracheal tube suctioning, tracheostomies, and an inability to communicate. One pneumonia survivor said: “That was the most troubling thing—when I was awake but couldn’t talk. I was trying to figure out where I was, but it was difficult trying to explain all of this without being able to communicate.”
The day to day impact of new disability
All participants described an often profound and jarring disability that interfered with even basic activities of daily living. Reports of debilitating insomnia, fatigue, tremors, and pain were common. For some, new trauma-associated disability such as loss of limb and paralysis superseded all other concerns. However, nearly all reported that weakness was central to their post-ICU experience even months after discharge, as exemplified by a septic shock survivor:
“…to start with, when I tried to hold a cup, I spilled it in the bed. I couldn’t brush my own teeth, I couldn’t comb my hair, and I wasn’t able to pick the covers up and move them.”
Participants also described substantial, persistent cognitive deficits. One caregiver recalled, “It was like I was married to somebody else…he didn’t remember anything I told him. We went to making lists for everything. I finally told him not to turn on the stove, the washing machine, anything! I was worried he’d burn down the house.”
Patients reported symptoms of emotional lability, depression, anxiety, and an enduring sense of fear and foreboding of illness recurrence. The common discordance between caregivers, who described symptoms of significant patient depression and anxiety even requiring medication, and some patients who did not endorse these issues even with probing, suggested widespread symptom underreporting and minimization.
Critical illness defining the sense of self
Participants (16 of 23) described the transformative effects associated with surviving a debilitating critical illness including new requirements for ongoing medical care, body image alteration by feeding tubes and tracheostomy scars, financial strain, and workplace and family upheaval. One septic shock survivor’s simple description exemplified this metamorphosis: “My medical condition is my life now.”
Some patients were particularly troubled by a belief that others failed to appreciate their mental or physical transformation by critical illness. One trauma survivor said: “People…sometimes don’t know what you go through. They think that because you are in one piece, everything is fine. But inside I’m all screwed up now.”
Relationship strain and change
Participants were conflicted in their descriptions of changing social dynamics, intimacy, and relationships (17 of 23). Dramatic and admiring illustrations of the lengths to which family members would go to care for their loved one were common during interviews:
“I would have to say it was pretty taxing on my wife. She was going to the hospital at five o’clock in the morning and getting home at two o’clock in the afternoon, probably five out of seven days. Then she picked the kids up and went to work. You know, she’s a no-quit kind of person, but I could tell it was hard on her.”
However, this caregiving requirement also provoked a sense of guilt, embarrassment, or occasional anger among others—particularly patients perceived this as role reversal:
“It is difficult to be subordinated to everybody I meet or interact with now. Could you imagine what it’s like to depend on someone else just to get through the day? To watch my wife get up earlier to fix me up, then go to work, then come back and baby me all over again? Take care of my bandages, my feeding tube, just staring at me like that?”
Most participants (18 of 23) described the importance of finding strategies to adapt to the changes in their lives such as optimism, hope, support of friends and family, spirituality, antidepressant and anxiolytic medication, self-sufficiency, and setting specific goals such as returning to work. Others displayed a remarkable sense of humor about their experience, including one elderly trauma survivor who remarked dryly, “The Golden Years are a bunch of crap!” Many anchored their overall sense of recovery to the nadir of their severe illness experience, tempering their expectations and readjusting their sense of what an acceptable outcome was:
“I think [my recovery] went a lot better than what [they] thought because they just kept telling me how amazed they were. And that day that I walked out of the hospital, they all came up from ICU to tell me, ‘Bye.’ And I walked out! Nobody could believe it.”
Some patients, however, reported that they were adjusting poorly to their newly acquired disability. They seemed to deny the majority of their symptoms, perseverate on regrets and missed past opportunities, or profess simple resignation, saying only “this is my life now.” One caregiver described the frustrating uncertainty of recovery: “Nobody prepared us for what to expect when we left. When we asked about the quality of life issues, I actually heard one of the doctors say, ‘Well, he’s alive, isn’t he?’”
The caregiver perspective
While caregivers endorsed the main themes patients described, they also reported unique experiences from their special vantage point (). Many caregivers (7 of 24) were distressed by fluctuations in patients’ mental status and cognition that they felt to be related to medications. The perceived lack of support after leaving the hospital was also stressful. The extent of their post-discharge caregiving strain was notable, as was the emotionally draining experience of explaining the situation to their children as well as balancing childcare and work.
Representative caregiver interview selections
Caregivers often identified a sense of increasing distance in their relationships, one saying simply, “I don’t think we have a real normal marriage now.” Another caregiver explained that financial pressures to return to work also served another purpose: “I hate to say it, but it got me out of the house. It was hard living with him.” Although some caregivers described a feeling of irritation or anger with their loved one, a lingering feeling of regret was more common: “You turn around and your life is changed forever.” The sense of hopelessness some felt was described poignantly by one:
“I feel like I need to be there for him, but he is difficult. I know he is scared, but he doesn’t seem to realize how hard on me this is…how hard it is for our kids. I am a nurse and see this every day, but I can’t believe this is happening to me. It is just too much sometimes, overwhelming. What will I do if he gets worse? We are sinking.”