Category: Medicine

Several years ago, I went to fix something that was broken on the front door to our house. To be honest it had been broken for a long time. Sarah had been asking me to fix it but for one reason or another I repeatedly forgot about it. She would periodically remind me and ask me to fix it when I could. On this day I had some free time. I was doing some work around the house when it occurred to me that I still needed to fix the door. I went and got my tools and was able to fix it without too much problem.

That was when Sarah got upset (frustrated).

This story is not about a “Sarah problem” by the way. She had patiently waited for months. She had kindly asked and reminded me to fix it over a long period of time. The interesting thing is that she didn’t get frustrated during the months of waiting. It was not until I started working on it that she got upset.

Let’s pause to consider the two perspectives.  We will do it kind of like they do in the old sitcom television shows. 

The camera zooms in on Mike with a confused and thoughtful look on his face. You hear Mike’s inner voice start talking, “I was a good husband. I used my free time to think about our home and the needs of our family. On my own initiative I got my tools and went to work on fixing the door to the house. I was sort of impressed at my handyman skills. I was able to get it fixed without too much fuss. It looks pretty good, if I don’t say so myself. I thought I would get a lot of praise and kudos from my family for the good work I had done. Instead, my wife was frustrated. I don’t get it. Wasn’t she happy to have me get it fixed? Would she have been happier if I had just continued to ignore it? You try to do something good and in the end, you have a frustrated wife. Sigh…”

The camera suddenly shifts. You now see Sarah’s face. She is trying to not be frustrated as she thinks to herself, “I love Mike but sometimes he can drive me crazy! We had something broken on the front door to our house for months. I have been patiently asking and asking and asking him to fix it and he had not done it. I have not wanted to nag him about it and so I have been very patient and just would periodically and gently remind him. Today he went to fix it and it really didn’t take him very long to get it fixed. Why did he take so long to fix it in the first place? If he could have done it this easily, why didn’t he just do it when I first asked him to? I don’t know why this can seem to frustrate me so much. Now that is fixed, however, I realize how long he ignored me as I had to keep asking him to fix it. Sigh…”

To be honest, Sarah has a point. I really could have and should have just fixed it right away. My months of procrastination did not make the job any easier. In the end, it didn’t really take me much time to do the job. I love my wife. I would never intentionally ignore her or things that are important to her. In this case, I honestly would just get distracted and forget about doing it. I really need to do a better job of paying attention to getting things done that she needs me to do around the house.

This is not a particularly poignant or dramatic story.  It turns out however to be a really valuable lesson and one that I see play out over and over again in my medical practice.  Let me explain.

Recently I was rounding in the ICU. My patient recently suffered a serious heart attack. She became very ill and ended up requiring a temporary artificial heart pump to keep her alive. She had multiple teams of physicians, advanced practice providers, and nurses caring for her. She had high risk and complex stent procedures done. There was a period of time when we didn’t know if she would survive, or if she was going to need to be considered for heart transplant or a ventricular assist device. Eventually she started to get better.  We were able to wean (reduce the doses of) the potent medicines that were raising her blood pressure and making her heart work harder to keep her alive. We were also able to wean and then remove the temporary heart pump. She was and is getting better.

Today she broke down in tears and frustration. 

There it is again. Sarah wasn’t frustrated until I started working on fixing the front door. 

My patient wasn’t frustrated before. When she was going through procedure after procedure, was feeling very sick, and things were really scary she didn’t complain at all. Now that she is getting better, she is frustrated and upset. 

But I am an experienced clinician. Or perhaps it is because I am an experienced human being, because I wasn’t surprised at this. I have seen this so many times that I have come to expect it. I call it the “Crest of the Hill Anxiety Syndrome.”

I routinely tell patients that the hardest part of a hospitalization is the last few days of their stay.  I have had patients in the hospital for several months and not have them complain or get upset at all until about 3 days before discharge. Sometimes it gets so bad that the patient will threaten to leave AMA (Against Medical Advice). I have more than once been called to urgently go see a patient who is insisting on going home just a few days before it is really wise for them to do so. 

The first few times this happened it puzzled me. The patient has been in the hospital for 6 weeks going through a life-threatening illness and a complex treatment regimen and now they are upset and threatening to leave? What gives? 

And then I chuckle and remember Sarah and the front door.

I have written about the power of “hope” before. Remember that “hope” is not an “I wish, I wish, I wish,” but is instead the concept of shifting our thinking to focus on good things to come. By focusing our attention on the future, we can better tolerate the present. Hope is an incredibly powerful tool that can empower us to endure really difficult times. The crest of the hill anxiety syndrome is partly related to this. It seems that when “hope” is far off, it is abstract. It is something to be dreamed of but not something that is reachable. When, however, it is getting close to becoming a reality, it becomes so real that it can create incredible anxiety and frustration.

It is perhaps a bit like Tantalus.

Tantalus was a god who did all sorts of things that he shouldn’t. This included stealing from the gods, revealing secrets of the gods to mortals, and even killing his own son and making a soup out of his son’s body to test the god’s omniscience.  As a punishment for his actions, he was condemned to stand in a pool of water beneath a fruit tree with low branches. Whenever he would reach to pick some fruit, the branches would raise up and pull the fruit just out of his grasp. Whenever he would stoop down to take a drink of water, the water would recede so that he could not get a drink.  Whatever he desired would be visible but just out of his reach.

Our patients have been dreaming of a time when they will be able to go home. They will be able to see their own house, rest on their own sofa, sleep in their own bed, and eat their own food. They will no longer have to put up with the noise, pain, food, and indignity of the hospital. As they get close to going home, the reality of it starts to get so real to them that like Tantalus they want to reach up for it and grab it. Suddenly, the same old hospital food is unbearable. It seems like there is no way to make their hospital bed feel comfortable. They are sick of watching whatever is available on the television or reading whatever books they have. Every blood draw is one more frustration and pain for them. They suddenly feel the weight of all that they have endured at the same time as they are not able to get what they want.

Being able to see the light at the end of the tunnel is incredibly encouraging. It brings hope and promise for the good that is coming. But as the tunnel goes on and on, suddenly the walls can begin to feel narrow, confining and claustrophobic. The air begins to feel thin and unbearable. The light at the end of the tunnel that once brought hope and encouragement now brings just an oppressive awareness of the reality of tunnel that they are in.

They are like Tantalus and able to see but not able to have what they want.

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I dare to dream that we are in the last major COVID-19 surge. Omicron is 4 times more contagious than the original SARS-CoV-2 strain. Fortunately, it seems to be more prone to attacking the airways rather than the lungs. This is all good news and bad news. The good news is that it seems that people are not getting as sick as they were with the delta strain. Do not get me wrong, some people are still getting horribly and incredibly ill. People are going to die of omicron. But the percentage of people who catch omicron who get very sick appears to be less than with delta. Hospitalizations and deaths since omicron (at least so far) have not risen as quickly as the increase in the number of people getting Covid. That is the good news. The bad news is that it is so contagious that a LOT of people are going to get it. I have heard some experts speculate that this means that the vast majority of our population is now either going to be vaccinated or get omicron (or both). This means that eventually the level of immunity in the community will become very high. If a high percentage of people are immune and unable to get infected, the community prevalence will drop.  

There is a snowball effect that goes both ways.  If community prevalence rises, people are more likely to catch COVID (there are more people to catch it from). That raises community prevalence even more, making even more people likely to get infected and so on. It also goes the other way. Once more and more people are immune, they are less likely to catch COVID. If people are not catching COVID, the community prevalence drops. That means that there are fewer and fewer people spreading the disease. That means that even fewer people will catch it. As fewer people catch it community prevalence drops progressively further, and the disease begins to go away.

Maybe (just maybe) this is the beginning of the end of the horrible parts of the pandemic. We are going to have to live through several weeks yet of a LOT of people getting sick, but maybe after that, things will get better. There might be a light at the end of the tunnel.  But there is also a lot of tunnel left (several weeks likely).  As it gets closer, we might begin to feel frustrated.  We might begin to feel the “crest of the hill” syndrome. 

Now is not the time to “leave AMA.” The next 4-6 weeks are going to bring an enormous surge of people getting COVID (it has already started). We anticipate that businesses (especially our hospitals) are going to struggle with problematic staff shortages. We are already seeing a tremendous increase in test positivity. Large numbers of people are contracting COVID (700,00 – 800,000 people per day in the US). Even if they are not getting as sick as they were with delta, the numbers of people who are off work is (and is going to continue to be) a big issue. Now more than ever is a time for you to be sure to do whatever you can to keep yourself and your family safe (masks, distancing, booster shots, etc…)

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When I looked at my patient in the ICU today, there were tears in her eyes. 

I smiled a reassuring smile at her. “I hope you know that what you are feeling is not a surprise to me? You were so sick earlier this week. You are getting better now.  It may seem odd, but this phase of your illness is when I find that patients have a hard time coping. I know it is frustrating. I am sorry for all that you have been through and what you still have to go through. It is okay for you to be upset. It is really quite normal to be frustrated.”

She looked up at me and her eyes brightened. Her daughter nodded, “See Mom? This is what I was trying to tell you.” 

I thought about telling them a story about the time that I fixed the broken part on the front door to our house. 

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/