I’m a sleep researcher in the department of Psychology at UC Riverside. I would like to tell you a story – a very personal story, that both illustrates the central theme of my life’s work, which is to understand the importance of sleep, and addressed the critical problem that we face in our culture today, namely that we are in “sleep denial”.
About a year ago, my one-year-old son was admitted to Children’s Hospital Los Angeles (CHLA) for brain surgery. Two weeks earlier, his attentive pediatrician had noted that his head size was in the 99.7th percentile and sent us for an immediate ultrasound. She told us that if nothing were wrong, we would hear from the medical team the next day. A couple of hours after the scan my husband got a call from the doctor that made him cry. Our little guy had a baseball-sized arachnoid cyst at the back of his head. The cyst was blocking drainage of cerebral spinal fluid and pushing his cortex against his skull. We were told that his head would continue to enlarge around the fluid-filling balloon and that he would need brain surgery as soon as possible. After many phone calls and visits to doctors’ offices, we threw our lives into the hands of a doctor at CHLA.
The operation was a success and we met our son in the ICU with as much a feeling of relief as realizing we had all survived a horrible car crash. My story really begins here, in the ICU, and continues on to the regular wards, after we were readmitted to the hospital due to a secondary meningitis infection. This story is not about the harrowing experience of my baby’s survival, or the stressful parental vigilance around his treatment plan, or the crippling medical costs that took one year of fighting with our insurance company to pay. It is about the complete and total disregard for my child’s sleep while he was in the hospital. It is about an institutionalized denial of this most vital, natural healing resource that is completely free of charge, more powerful than the majority of remedies that come in a pill, but completely ignored by medical science.
The three most critical signs of the epidemic of sleep denial are 1) noise polluters, including the beeping and hissing of most of the medical devices monitors in my son’s room, 2) light polluters, the inability to adjust the room to appropriate light levels during the day and night, and 3) sleep ignorance, evidenced in the total disregard for my son’s nap and nighttime sleep schedule by hospital staff, nurses and doctors.
Let’s start with the noise polluters. During our four-night vigil in the ICU, our baby was wired to the hilt with every possible medical recording device strapped, taped and plunged into every possible orifice or patch of naked skin. Of course this makes sense, since he and the other unfortunate kids on the ward were recovering from trauma and it’s all-hands-on-deck for checking their vitals. What doesn’t make sense, however, was that all these wires were connected to stand alone monitors that were surrounding his little crib with bright, flashing lights and constant boisterous beeping. The beeps were of two categories. One was a regular, high-pitched, loud tone alerting the involuntary listener that everything was status quo. The second alarm pierced the atmosphere at top volume, informing all occupants within a pretty distant radius that something was drastically wrong with one of the vitals or simply that the medicine pump was empty. My husband and I asked ourselves time and again: Why was either of these alarms being played inside his room, instead of at the nurse’s station? What could my son possibly do with this information? How did it benefit him to have the emergency or status quo beeps next to his ear, such that every time he began to relax his seriously injured brain into a restful sleep, he would be jolted awake by these intrusions? Couldn’t we just be alerted when something was wrong, rather than be constantly tapped on the shoulder by annoying beep letting us know that everything was A-OK? Of course, you are saying to yourself, these beeps are not for my son, they are for his friendly nurse who sat at his station a considerable distance away with a closed door between him and the offending calls. Yes, you are right, and perhaps the nurse had other ways of being informed as to the state of my son, but it appeared to us that the only way he responded was if the volume was turned up to 11, Spinal Tap style. After much trial and error, my husband and I figured out which secret code of buttons allowed us to hack the system and reach the volume control. But, these devices have no mute, so we could never get rid of the sound completely, and hence nobody ever really got any sleep.
The second sleep antagonist that is pervasive in hospital settings is light pollution. Our bodies and minds run in cycles that are regulated by light. The presence of light sends signals to our brains that it is time for us to go out in the world and forage for food, learn something new, meet a possible mate, and buy a new car. The absence of light lets us know that all systems need to power down for a while, that we need to digest the food we just ate, consolidate the information we just learned or it will be lost, and dream about exciting ways to obtain our items of interest, be it human or automobile. Without appropriate light signals from the environment, our central and peripheral nervous systems can become confused and lose track of when our metabolism should be racing to keep us alert, awake and ready for action, versus when we need to be quiet and go into repair mode, releasing restorative neurochemicals, including growth hormone, prolactin and satiety hormones. Importantly, there is strong evidence that there are times when we are more or less sensitive to medication throughout the 24 hour cycle, such that disturbing our light/dark rhythm can decrease effectiveness of drugs that treat things like pain and insulin regulation. This is not something you want working against you when you are recovering from brain surgery at any age, especially not at one year old. But this is exactly the mayhem that modern day hospitals wreak on patients everyday.
In my son’s room at the CHLA ICU and later in the hospital room where we camped out for four weeks, there was no way to eliminate light during the daytime for his naps, and during the night time it was also impossible to make the room completely dark. On the other hand, the room was situated such that he never got truly awakened with bright light from the sun, or something similar like a sun lamp. Under such constant ambient lighting, our internal clock that guides most of our bodily and mental functions doesn’t get the cues it requires from the outside world to tell us when we should be asleep or awake, eating or fasting. And this does quite a number on basic functions, including healing, as well as making us lose track of time and disorienting our minds. One possible vicious side effect of this constant ambient lighting during extended stay in the ICU is called “ICU psychosis”. Patients who suffer from ICU psychosis start to become paranoid, hear voices, feel mistrustful and afraid of the hospital staff, and even violent. And guess what, since patients need constant advocates and supervision of their care, ICU psychosis happens to the caregivers of patients too. This is because the same time warping, day/night melting, crazy-making, beep-filled hell is experienced by patients and their loved ones alike.
Lastly, the hospital kills sleep because nobody seems to care about it—or appears to understand its importance. This can be seen in the complete lack of interest in scheduling visits with doctors, specialists and nurses around my son’s sleep schedule. I even had to turn away a janitor at 9pm who wanted to clean my baby’s room, for goodness sake. He had just had brain surgery, but there seemed to be absolutely no consideration of the damage that they were doing by not letting him have his regular naps and his uninterrupted nighttime sleep. I am a sleep scientist and a nap expert with a popular book on the topic. I have spent my career advocating that sleep is vitally important to human health and cognitive function. This knowledge gave me significant confidence in requesting that the hospital staff organize their visits in groups, so all the work that needed to get done could get done with the least amount of disturbance to my son’s sleep. But, even though quite a few nurses told me that they were personally aligned with my emphasis on sleep, this approach was far from the standard hospital practice.
Now it’s important to understand that my son was being treated at a children’s hospital that was ranked the No. 1 in California. This was evident by the great care we received in almost all facets of our treatment. But as far as I could see, all these accolades did not translate to smart medical practice in terms of sleep. And if this is the state of the best U.S. hospitals, what do you think is happening in smaller institutions here and around the world? Perhaps it takes a sleep scientist and mother, who shared the misfortune with so many other parents of having her deepest treasure need hospital care, to recognize the absurd state of affairs that removes the most critical healing process from the institution of healing. But, to protect our children and all the weak and ailing, we need to do more than just recognize the problem. We need to change the culture of medicine, and mostly likely also the culture at large. We need to understand its root cause, such as the fact that sleep is rarely taught in medical school. Think about that for a moment: something that we do for a third of every day and third of our lives on the whole, is barely discussed when physicians-in-training are learning to heal people. That is, medical students may spend more time learning about rare infectious diseases (that they are likely to never see in a patient) than learning about something that each and every patient does every day. This needs to change. In this blog, I will spread understanding of the importance of sleep by updating you on the coolest new findings in sleep science from my lab and others. Also please look for dispatches on my progress to change the culture of medicine and society as a whole, e.g. #sleeprevolution. Whether you are a doctor or nurse, engineer or scientist, hospital administrator or policy maker, I welcome your input and invite you to join in the effort. Everyone, I welcome your questions and stories. Change of this magnitude will take a village. I look forward to building one together.