Delirium: Entering Their World and Lessons Learned Along the Way

A few years ago, four days after my cancer surgery, I went to the emergency department with fevers, chills, and back pain. It turned out that I had an injury to my left kidney as a complication of my cancer surgery. My surgeon had warned me that this was a possibility.  The Emergency Department nurse asked if I wanted something for pain. It made sense to ask for something. 

I wish I hadn’t.  She gave me some morphine. 

The night and the next morning were bizarre. I had strange nonsensical dreams. To a rational scientific mind, I want my dreams to make sense. These made absolutely no sense and in that way were very disturbing. 

They reminded me of the night terrors that I had for a period in childhood. I can still remember those dreams and still don’t want to go near them. They were so awful because I couldn’t rationalize my way out of them. I remember that I would wake up from them, but the thoughts were still so disturbing that I wouldn’t let my parents know I was awake. It was easier to let them think I was still asleep and dreaming because I had no way of explaining why I would continue to be scared and crying. Those dreams were not rational. I couldn’t just invent a rule, like the rule that I created that all monsters couldn’t touch you while you had your eyes closed. Or the rule that I made that monsters had to hide if you turned on a light. Those were nice and tidy rules. These dreams were abstract, like modern art. They were shapes that were TOO big or TOO small. Even now I struggle to explain it because the concepts do not fit into a nice rational description.

That night after the morphine was miserable. It was very similar to my childhood night terrors. I continually had dreams I could not control. I could not rationalize or invent rules to try to help them. I just had to endure them, but they kept coming and coming. I got to the point where I didn’t want to sleep because I did not want to return to those dreams again. I got up and kept myself awake because at least when I was awake, I wasn’t having the dreams.

As I think about that experience, it reminds me of Beverly.^[1]

Beverly had suddenly become very ill with severe heart failure (cardiogenic shock). She was urgently transferred to the Meijer Heart Center. There our team began delivering advanced lifesaving therapy. The treatments worked and with time her heart function improved. But even though her heart improved, and she was able to come off the mechanical circulatory support and the ventilator, something else was still wrong.

Beverly would not or was not able to talk. She had a blank stare. We did not know what was going on.

We use the term “delirium” to describe a confused or disoriented state that often occurs in the setting of medical illness. It is not uncommon. A lot of factors are associated with the development of delirium including sedating medications, sleep deprivation or disturbed sleep/wake cycles, as well as infections or medical illness itself. Our ICU teams are all quite expert at delirium and trying to minimize or prevent things that can cause it. Beverly was unusual in that she just sat looking at us but would not talk or interact with us.  This went on for several days.

All the king’s horses and all the king’s men couldn’t put Beverly back together again.  

Our ICU team did not know what to do to help her recover. Neurology likewise didn’t find a specific cause or anything that we could do to help her. Psychiatry didn’t have any great suggestions either. The only treatment (which is the usual approach to delirium) was to support her, avoid medications known to cause delirium, try to normalize day and night (sleep/wake cycles) and wait. We waited and fretted, and then waited some more.  And then after several days, she started acting more purposeful. Then she started talking again. Over time she improved and transferred out of the ICU to the telemetry floor and eventually to a rehabilitation facility and then to home. She fully recovered.

I didn’t think much about what had happened to Beverly, until I got the letter.

The letter was remarkable. It was from Beverly. She wrote to thank us but also to try to provide some explanation of what she had experienced.  What shocked me was to learn that in those several days when Beverly was just sitting there and staring, but not speaking, she was completely aware of what was going on. She was just not able to tell us because she couldn’t explain what she was experiencing in her mind or because she didn’t think we would understand.  

Reading her letter suddenly I thought about my experiences as a young child with night terrors.  I remember my father trying to wake me up hoping that he could comfort me from my nightmares. The problem was that I was already awake. I was still crying because even after waking the dreams remained intense and disturbing and real in my mind. I couldn’t explain it to him. I would not explain because I really had no way to describe what was happening in my mind. I didn’t know what words to say and so I said nothing.

Beverly too had kept silent because she couldn’t explain what was going on. She would not or felt that she could not tell us because she didn’t think we would understand. She was awake but experiencing a strange and irrational world and doing it all alone. It must have been terrifying for her.

I wrote Beverly back and asked for permission to use her letter to teach. She has given me her permission to use her letter in whatever way I wish. Here are some selected excerpts: 

“My next memory was at Spectrum^[2] before I recognized my family. An elderly woman came into my room. She told me to ignore her as she was just there to watch what was being done to make sure I was getting the best care possible. She sat in the window seat, and I would look over at her occasionally and it brought me peace. One day she was told she had to leave while I was being bathed. She smiled and left, but she never returned. I kept looking at the window seat to see if she had returned. I later learned there was no window seat.”

“My dreams continued, and I never did doubt that they were real. There were so many. So many continuations and so many different subjects… Time did not make much difference. My dreams would go back and forth in time.”

“My dreams took me to California, New York, Indiana, Holland, Muskegon and Fremont, etc… Some days I would be back in time. Because I was always traveling, I was always looking for my husband, Don.  I was so worried he couldn’t find me, and I was concerned that I was causing him stress because I had not told him where I was going.”

“The concern was constant, and it was confusing that I would be questioned as to if I knew where I was by so many of the medical staff. I of course knew where I was: Wherever my dreams took me. I was constantly traveling. I also learned that they wanted me to answer, “Spectrum Health in Grand Rapids.” This I did not really believe but realized this was the answer everyone wanted me to say, and so I started to reply, “Spectrum in Grand Rapids.”

 “It was at this point I remembered so many of the dreams I had while in Spectrum were just dreams. They were simply not possible.”

“I am amazed at how clear most of those dreams remain. I continue to remember different dreams I had during my hospital stay… They were all so very real at the time.”

“I am so glad none of you ever gave up. I really appreciated when you took time to discuss my problems with me, even though I certainly was not able to speak correctly at times due to the confusion I was experiencing.”

Her letter was amazing. It pushed me to think more about how we should support patients like Beverly.

I read an article on the kindness of “entering the reality” of dementia patients.^[3] The concept is that it can be upsetting to patients (with dementia or delirium) to deny their experiences. Their experiences are indeed very real to them. Other patients who have recovered from delirium have told me, like Beverly, that the dreams or delusions that they experience in the moment seem even more real than the true reality. The article went on to suggest that we should try to hear about our patient’s experiences and be a part of what they are going through. We should seek to be a friend or companion that goes through the process with them rather than making them feel abandoned by denying what they are experiencing. This does not mean that we are to lie to our patients. Rather it means that we acknowledge the validity of their experience as we support them through it. Beverly was alone in her experiences. What if we could have been there with her to support her and help her?

Over the past few years, I have found it helpful to expect delirium to be present in my critically ill patients. I routinely ask my ICU or post-ICU patients if they have been having strange dreams or disturbing experiences.  Since I have been doing this, I have become impressed at how often my patients have been experiencing significant delirium. It is much more common than what patients will volunteer on their own.  Many patients will tell me they are doing well, but when I directly ask if they have been having disturbing dreams or hallucinations, they seem relieved. They open up to me and tell me about the terrors they have been experiencing. Most are afraid to tell us because they either can’t describe it, or they are worried we will think they are going crazy. If I anticipate their delirium and describe it, I normalize their experience. This then gives them permission to honestly describe what they are experiencing. It allows them to be open with us about what is going on. This can be a wonderful relief to them. They no longer feel a need to hide what is happening. They are finally not alone.

One patient told me that he was seeing aliens climbing the outside of the heart center. He described them as having suction cups on their feet that helped them climb the windows. He laughed as he described it to me, as he too realized that it was really pretty ridiculous. This hallucination is just odd enough that I often share it with my other patients. It generally breaks the tension and helps them to laugh.

There are some lessons in all of this, I think. I clearly have learned a lot about anticipating and managing confusion in my hospitalized patients. Maybe there are more lessons. Some are medical and are related to how to be compassionate and to help our patients. I suppose I could take the lessons even a little bit further. 

• Sometimes silence does not mean that there is not a problem. 
• Sometimes it means that the other person cannot or does not feel free to tell you what is really going on. 
• There is often value in trying to “enter their world.” This means a willingness to listen and accept as valid their experiences, even if they do not match your reality.  

I had a patient who was not taking his medicines. It would have been easy to sit out at the nurse’s station and judge him, complaining about his “noncompliance.” But there had to have been more going on. Could I enter his world and try to understand? 

I sat down in his room and started talking with him. I anticipated potential problems or barriers to adherence to the medical plan. Why would he not be taking his medications? I asked about where he lived. I asked about cost, transportation, and barriers to getting his prescriptions filled. I asked about side effects from his medicines. As I did, I could see him relax. The more we talked it seemed as if a wave of relief came over him. The less I judged and the more that I sought to understand his situation the more he let his guard down. Suddenly we seemed to be working as a team to help him get better. His previous silence about not taking his medications was replaced by a mutual time of problem solving to find solutions for him. We didn’t fix everything. He still has problems consistently taking his medications. It is a little bit better now. We have overcome some of the barriers.

Maybe that is the biggest lesson from all of this. Silence does not mean that someone does not have anything to say. Sometimes silence means that they are unable or afraid to say what they need to say. In that setting, kindness might mean trying to “enter their world” as a friend or ally. Until we do that, we never really know what the other person is experiencing. 

Recently I was rounding in the ICU. One of our patients was recovering from a recent LVAD implant surgery. When I was talking with him, I felt like there was a wall between us. He was half-heartedly answering my questions and was not looking me in the face. I stopped and asked him, “Have you been having strange dreams or experiences?” Suddenly his eyes opened wide, and he looked me in the face. “Yes, I have.” I reassured him that this was very common. I told him how my patients have told me how they have vivid and often intense dreams that seem as real or more real than what is going on the ICU.  The wave of relief that came over his face was visible and obvious. He began talking openly telling me about his dreams. He talked about travelling around the hospital. He told me about being in other places. He told me how up until then he was afraid to tell anyone because he thought he was going crazy. He was so relieved to be able to talk with me about it. 

Beverly wrote me, “I am so glad none of you ever gave up. I really appreciated when you took time to discuss my problems with me, even though I certainly was not able to speak correctly at times due to the confusion I was experiencing.”

You are welcome, Beverly. It was our privilege and honor to do so. 

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^[1] Even though I have her permission to share details of her story, I am using a made-up name to protect her privacy.

^[2] A reference to our health system, Spectrum Health, in Grand Rapids, MI.

^[3] https://www.mindcare.org.uk/news/2014/09/meeting-someone-dementia-reality/