| The nature of the ICU delirium experience |
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1. Patients’ ICU delirium-related distress was experienced by the whole person |
a. Patients with ICU delirium felt frightened, angry, misunderstood, empty, frustrated and overwhelmed, and afterwards ashamed, embarrassed and guilty |
“I didn’t dare go to sleep. When they told me to go to sleep and rest, I was afraid that if I fell asleep, I would never wake up again. I was also afraid of waking up covered with lines, tubes, and apparatus.”
“Afraid, yes … afraid and you do not understand why, you start to think how long I had to stay imprisoned.”
“I was angry at the nurses because they did not do what I wanted.”
“It was stronger than me. I am ashamed.”
“I am very embarrassed regarding to the people who cared for me. I was such a bad egg. I really feel guilty.”
“I would like to apologize to my visitors for acting so bizarre.”
“I’ve got to face them … I’ve got to deal with it somehow … I still need to apologize for it.”
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b. In addition to emotional distress, patients experienced cognitive, physical, relational, and spiritual suffering during ICU delirium |
“When I closed my eyes and tried to sleep, I saw a lot of things flying through the air: colors, old men and women, and all sort of things”
“I could not think. My speech was so stupid and wrong. I thought something but said something else. It did not connect in my brain.”
“I lay there without moving a muscle, totally stiff. I was covered in tubes and pipes and wires, connected to my arms, my legs and my throat. I was completely apathetic and passive.”
“I was too tired to sleep.”
“I could not sleep, although I wanted to, I couldn’t relax.”
“It felt like I was living in a bubble; I couldn’t move my arms or legs. And, ah, people all around me but no one answering me … I would be calling out to people, but no one would even look up.”
“My voice did not obey me. I tried to answer, but could only indicate yes or no.”
“I had fantasies and was horrified: the nurses were dangerous. I was attending my own funeral.”
“I was dreaming I passed the border; it was the end, and everything turned dark.”
“I have been from Heaven to Hell.”
“My worst nightmare was the light at the end of the tunnel: ‘stop breathing and you will get there’. In the other direction was my pregnant daughter was willing me to live. This nightmare has been very disturbing to me ever since.”
“The doctors had taken me to a shopping centre in Alberton and displayed me”
“The devil…sitting next to me holding my hand”
“They’re gonna shoot bombs”
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2. Family members felt compassion, uncertainty, and anxiety during ICU delirium, as well as apprehension about the future |
“I stayed with him most of the time…he was a bit scared…plus, he was delirious.”
(spouse)
“So, I still get pretty actively involved, trying to help the nurses [unintelligible] him, or help clean him up, because he gets pretty nervous whenever others are trying to bathe him, like really uncomfortable.”
“The nurse came and said, ‘can you feel she’s different?’ So, I said, ‘Yes, I can. She is irritated and… restless…and angry about all this”
(daughter)
“He has been confused about where he was and what had happened…”
(ex sister in law)
“So, I don’t know that some of the conversations we had with ____, because he was in the condition he was in, I don’t know that he ever actually got that through his head.”
“I’m not an expert in this area, but I could see he was not himself.”
(spouse)
“It’s clear, if he continues to be a bit strange in his head, to say it straight out, I would be really upset about that.”
(spouse)
“It’s not the person that I knew before he came in. That’s what worries me the most.”
(brother)
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| Mediators of ICU delirium-related distress |
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3. During ICU delirium, patients valued nurses’ presence, kindness, and explanations; and thoughts of family and home |
“And then there came a nurse who was pampering me, she took me in hand … took me for her protection. She took me for her own … this nurse … she did everything one could ever do for me, this nurse.”
“I can remember the nurse … rubbing her hand over my head … and she was smoothing my hair down, her words were so kind. Even when I was in that state, I could feel someone taking care of me.”
“I felt that they [family] were there, they seemed far away, but I could hear that they were there.”
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4. During ICU delirium, family members valued communication with the ICU team, being involved in the patient’s care, and signs of their recovery |
“Well, I … tend to ask a lot of questions until I understand what’s going on. I think that for me, under the circumstances if … a nurse doesn’t have the time to do that, if a case manager or [someone] could communicate … those delirium symptoms or what to expect, or something like that.”
“I think when they first go in—that way, you would know you could do certain things and not be in trouble for [helping?] do it. I’d say within the first day or so. Yeah, maybe somebody could say, ‘Hey, you may run into a situation where your family member has delirium. Here’s what to look for. Here’s the signs. Here’s some basic reasons on why it’s happening’.”
“But when he was on that ventilator, he couldn’t talk, so we got paper and pencil and tried to write stuff down. That was one thing I guess I did. And I just tried to make him feel that I was there for him.”
“I was able to work from his room, too. So, if he needed anything, he knew I was there.”
“Well, I would talk to him and tell him what was going on, and read the paper for him when he couldn’t read it … I’d just keep him up to date on things.”
“Yeah, just the nurse suggesting that maybe you know, ‘Can you please assist me?’ Or ‘Are you comfortable in assisting me?’ Sometimes … they’re just a little hesitant to want to ask because they’re so used to not having caregivers or loved ones help their loved ones.”
“So, with the patient’s care, I still get pretty actively involved, trying to help the nurses, or help clean him up.”
“Because some things he says, shows me he is there.”
(spouse)
“Well, he has been able to recognize us who have come visit him. He has been able to do that all the time. I have had the feeling, he was himself, behind that blurry, very weakened state he was in.”
(ex sister in law)
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