Self-admittedly, Erin Johnson, RN, MPH, MSN has always been a “good sleeper,” generally sleeping from 10pm-7am. With no known sleep disorders and holding characteristics of a deep sleeper, Johnson has been known to sleep on rocks and through windy conditions during camping trips. But sometimes life does not allow for natural sleep patterns — especially in extreme cases.
Johnson’s daughter was diagnosed with infant Acute Lymphoblastic Leukemia (KM2TA) just shy of 11 months of age. Johnson explains. “Sierra was developmentally and clinically dependent on adults for her care and comfort night and day.” Though most new parents endure sleep deprivation after the birth of a baby, in medical cases, the deprivation is extreme and can seem unavoidable.
PART I: What is Sleep Deprivation in a Medical Setting?
The following is an actual account of one night’s sleep fragmentation for Erin Johnson and her daughter, Sierra, while staying at a hospital in northeastern United States.
Sleep Diary
Admission January 28, 2019 — February 14, 2019
Second Leukemia Relapse Involving 6 Cranial Nerves, Meninges, 90% Marrow
February 14, 2019
9:45pm: Sierra falls asleep.
10:00pm: The night nurse comes in, gives meds, and starts Sierra’s night feed.
10:37pm: Nurse is gone; I lie down to try to sleep.
10:45pm: A woman comes in and starts changing trash bags, unfurling plastic bags and banging containers — even though there is a sign on the door stating that Sierra is sleeping. I get up and ask her to please not wake Sierra. She offers to take the trash bin outside to change the bag. When she leaves, I lie down again.
12:00am: Medical personnel comes in to type on the computer in our hospital room.
12:38am: Our nurse wants to do vitals. Sierra wakes up. The light just inside the door is on. I ask our nurse if the light has to be on — she says she has to have it on to give meds. The nurse asks me if we should do labs and I say yes, labs and vitals and anything else we can cluster. Since we are on contact precautions and she already has a gown on inside our room, the nurse calls someone on her phone, asking them to bring flushes.
12:58am: The nurse leaves. Sierra and I are both wide awake. Sierra wants me in her crib and cries. She’s upset because I did not clean up the caps and flushes that the nurse used — she wanted me, not the nurse to clean up. I consent to lie in the hospital crib with her.
2:06am: I climb out of Sierra’s crib and back to the sleep surface. My mind is wide awake. I think about so many things — so many worries and concerns about her health. I think about how everything would feel so differently if she was healthy. I’m unsure when I fall back to sleep.
2:37am: Someone comes in and quietly leaves again.
3:10am: Sierra’s food pump beeps — I get up and gingerly pull the line out from under Sierra to unkink the line and stop the beeping. Since I’m awake, I use the bathroom. When I lie down again, I hear a child yelling in the Emergency Room below us. Light from the ER shines onto my bed from between the blinds. Thinking vaguely about studies I have read about frequent sleep disturbance and increased cancer risk, I put on my eye mask to block light.
3:20am: The food pump beeps again and this time the screen reads, “No Flow.” Our nurse comes in, responding to the beeping that she must have heard out in the hallway. The nurse shines a flashlight directly at Sierra’s face while troubleshooting. Sierra makes noises. I cringe, hoping Sierra doesn’t wake up. Our nurse leaves.
3:23am: I go back to bed. My mind is restless. I think about the knife edge that we are navigating during this relapse. The hope, the grief, the horror of it all.
4:26am: I am not sure if I was sleeping or not. The food pump beeps and again the screen reads, “No Flow.” I get up and troubleshoot it. Since I am awake, I text my sister who lives in Europe. She doesn’t respond. There is some comfort knowing I can text her in another time zone in the middle of these long nights.
4:33am: The food pump beeps again. I get up and fix it.
4:46am: Our nurse comes in to do vitals. She types, drops something hard and plastic on the floor. The sounds from the ER float up. The nurses speak loudly at the nurse’s station. There’s lots of laughter. Sierra wakes up and demands that I do her vitals. Sierra wants me to climb into her crib again. It is now 4:57am.
6:05am: Sierra is still awake after an hour snuggling together in her crib. Sierra says she is not in pain. I tell her I need to go to the bathroom, giving myself the chance to get out of her crib, hoping she falls asleep in the interim. I stand in the dark in the bathroom allowing the minutes to pass by, hoping she is drifting off. When I come out, Sierra hasn’t fallen asleep. She is awake, quietly saying, “Mama.”
6:20am: There is no way around it, Sierra wants me in her crib and is escalating her demands. I get into the crib so hoping for a few hours of sleep, though I know shift change and morning vitals are coming soon.
7:30am: The nurses come in for shift change. I wake up and fold myself out of Sierra’s crib. She remains asleep. Though I am enormously sleepy, I get up and dressed to get coffee and breakfast while Sierra is asleep. I come back to the room and lie down on my bed again. It is now 8:05am.
8:30am: Someone pokes their head into our room, then leaves again.
9:30am: The nurse comes in, peeks around the curtain that separates my bed from the rest of the room. She announces in a normal speaking voice that it is 9:30am. I look at her quizzically, not understanding anything she is saying. She repeats — again in her normal speaking voice — that we have to do vitals and meds. Sierra wakes up immediately. I have no chance to warm up to the fact that I have to be fully “on.” I just have to get up and comfort Sierra and do all the vitals since that is what makes Sierra feel safe.
Part II: What are symptoms of sleep deprivation?
Between May 2017 and March 2019, little Sierra was an inpatient for over 250 days. While Sierra’s grandmother (whom they lovingly call Omi) provided a significant amount of support, Sierra’s father, extended family and friends provided additional respite. Sierra’s mother mostly stayed in the hospital with her young daughter, especially while she was still breastfeeding.
Johnson explains, “Occasionally, when it wasn’t flu season, friends offered to babysit in the hospital so I could nap if the family sleep room was available. Sierra had round-the-clock assessment, monitoring, supportive therapies, symptom and medication management for the duration of each stay.” Since Johnson is a single parent, she was the point person for decisions, consents and tracking. Hundreds of doctors, nurses, techs, assistants, fellows, residents, therapists and other staff visited the Johnson hospital room day and night.
“Many procedures, processes or scans took place early in the day to provide the medical team with information to guide care,” Johnson explains. “The lights were bright, the hallway sounds were loud and it was hard to adhere to day and night rhythms with so much activity. We were frequently admitted to rooms without an outside-facing window, so in those instances, all light was non-natural lighting. Whenever we were in a room without a window, our bedtime crept later into the night. Very often, we could not fall asleep until after the midnight or 4am vitals.” But as Johnson’s sleep journal attests, the hours of sleep were always interrupted. Johnson admits it took a while for the lack of sleep to become noticeable. She could not recall an exact day or pattern as so many things became “hazy, with one memory melting in to the next.”
Melissa C. Lipford, MD is a Neurologist and Sleep Medicine Physician at Mayo Clinic in Rochester, MN. Dr. Lipford states, “Common symptoms of sleep deprivation include sleepiness/tiredness during the day, irritability, difficulties with attention and memory, and reduced productivity.”
Johnson noticed a grumpiness and irritability around days three and four of densely interrupted sleep. After additional nights of interrupted or too-little sleep, Johnson recalls that her body felt extremely heavy, like her “legs were made of cinder blocks” or she was “moving through Jell-O.” Johnson then began to notice weight gain after losing the motivation to exercise. Finally, she started relying on writing things down since she no longer had the mental energy to keep medication administration or other details reliable. Johnson says of this, “My ability to place things in time in my memory all but vanished. I could remember that events happened, but lost the ability to determine the sequence.”
“My ability to place things in time in my memory all but vanished. I could remember that events happened, but lost some of the ability to determine the sequence.”
When Dr. Lipford was asked at what point sleep deprivation would begin to damage physical or mental health, she conveyed, “Both long- and short-term sleep deprivation can have a negative effect on our health and well-being. Long-term sleep deprivation has been associated with reduced growth, greater risks of obesity, high blood pressure, heart conditions and neurologic conditions. Even in the short-term, sleep deprivation affects our ability to multitask or retain new information — cognition as a whole.”
Johnson knew the effects all too well. Though she was able to react and be cognitively sharp and present, she credits this to “helping my child have the best chance of survival, which gave me strength and stamina.” However, once Sierra mercifully went into remission, Johnson found that she no longer slept as soundly, that her formerly excellent memory has worsened, and that she continues to forget simple things such as conversations, details and names. “At some point,” Johnson adds, “I remember giving up trying to remember. I decided that self-care and saving scraps of energy were more important. I write everything down.” Johnson also noticed that when Sierra wakes her up during the night at home — from a bad dream, or from low-potassium level-induced leg cramps — she has fewer internal resources to cope. She explains, “I am less patient. I feel fatigued and frustrated quickly, like the compounded lack of sleep and sleep interruptions have left a mark on my emotional and mental resources.”
How to Combat Sleep Deprivation’s Effects
Once out of the hospital, Johnson attempted to sleep as much as possible, and sometimes succeeded. But each discharge from the hospital required a different set of at-home medications or therapies to manage. At home there was no call bell or fleet of expert nurses or residents to ask for immediate assistance. Johnson explains, “I did the medication administration and food pump trouble-shooting myself; I cleaned the sheets of diarrhea, vomit or food pump formula in the middle of the night; I hauled an extra mattress into her room and slept next to her, trying to preserve what little sleep discipline she had. I comforted her.”
On those precious nights when Sierra slept through the night, Johnson would still have to get up to attend to her. Yet, instead of falling into an exhausted sleep, Johnson tended to ‘steal’ time from herself. She explains, “I just needed an hour or two to take time to correspond with friends and family, to cook, write, or stream something online to wind down. I knew I was stealing sleep from myself, but there was no time for myself anywhere else.”
In a medical setting, the results of sleep deprivation can have life or death consequences, as Johnson knows firsthand. “One time,” Johnson begins, “I administered an overdose of Ativan at home, which landed us in the Emergency Room so Sierra could be monitored. I was angry with myself at having made this error, having tried so hard to protect my daughter from so many other things. And I was angry we ended up back in the hospital on a day when we were not supposed to be there!” Johnson also noted the number of times she put a shirt on backwards or left items at the hospital never to be seen again, all occurrences related to a lapse in cognitive and memory function due to lack of quality sleep.
“The only way to truly recover from sleep deprivation is to get more sleep.”
Dr. Lipford cites that the only way to truly recover from sleep deprivation is to get more sleep. Dr. Lipford expands, “When sleep deprivation is due to unavoidable circumstances, there are some measures that can help in the short term. When you know you will not get a good night of sleep, it might help to get some extra sleep beforehand, either by taking a nap or sleeping a little longer the night before. After a night of poor sleep, taking a short 20-minute nap can increase your alertness for several hours. Daytime physical activity can also be helpful. Even though your body is tired, getting in some moderate-intensity exercise can make you feel more alert and help your mood. Combining the exercise with daytime sunlight exposure — like taking a brisk walk outside — can increase the alerting effects.” Dr. Lipford also warns that use of caffeine early in the day can help with daytime alertness, but one must be careful not to overload a tired body.
Advice to other patients enduring hospital setting sleep deprivation
Johnson created the following eight tips to follow if faced with an extended stay in a hospital setting.
1. Protect sleep. Upon admission, talk with staff about ways to prioritize and protect sleeping hours. Advocate for things that support and shield sleep.
2. Ask about the care schedule. What regimens, procedures or processes can be clustered? Talk with night shift nurses about the importance of communicating with assistants so care can be clustered into one visit and not repeated unnecessarily.
3. Write things down. In settings where more than one staff member shares a shift, or where there are different staff each night, there is no institutional memory of sleep instructions. As these have to be created with each new nurse or tech, write down your sleep-related preferences and concerns. That way, new staff can be given written preferences and reduce the number of times information must be repeated across shifts. The instructional page could also be located in a place where staff can review it even if everyone is (finally) sleeping.
4. Create a door sign. A sign for the room door indicating that a patient is sleeping in the room will help staff be cognizant of sleep hours.
5. Block light. Whenever possible, safe and permissible, block light during sleeping times with towels and cloths. Use a light blocking sleep mask.
6. Get comfy. If the sleep surface at the hospital is uncomfortable, bring bedding from home. Johnson brough her pillow, sheets and three blankets under placed under the bottom sheet to add comfort to the mattress. Eventually, she brought in an air mattress.
7. Remember to move. Whenever possible, get some sort of exercise or movement, even if just walking around the halls.
8. Collaborate. At times, Johnson advocated for sleep, used the door sign and was still woken up regularly. In frustration, she expressed anger to the attending physician. His response was, “What would you suggest we do about this?” Collectively, they were able reschedule visits and create a better schedule for nighttime care. This allowed the elimination of one sleep interruption. Consider asking staff, “What can we do to reduce the number of times sleep is interrupted?” or “Can we think through this together?”
Lasting Effects on Health
Does long-term sleep deprivation have lasting effects? Johnson worries it will. She states, “My mom was 75 at the time of Sierra’s diagnosis, and is a four-time metastatic breast cancer survivor. Her cancer is linked to a gene, CHEK2. Because I have been tested, I know I have the same gene and associated risk. My dad’s side of the family has a lot of heart disease. During this treatment ordeal, my own physician said I had elevated blood pressure. I worry the inordinate amount of stress of navigating a pediatric cancer diagnosis, the accompanying financial and relationship stressors, compounded by lack of exercise, and poor sleep will all combine to enhance my risk for disease.”
When Dr. Lipford was asked if any long-lasting effects of sleep deprivation are known, she began by explaining the effects would be different among different individuals. Dr. Lipford states, “The best ways to prevent long-term effects are to do what you can to limit sleep deprivation while you are in the hospital and focus on getting your sleep back on track as soon as you can.”
Part III: What are ways hospital settings could better the sleep situation for patients?
Dr. Lipford reached out to two Mayo Clinic nurses about inpatient sleep enhancement interventions. Wendy Moore, M.S.N., RN, N.E. –B.C and Courtney Stellpflug, APRN worked with Dr. Lipford to compile the answers below.
Q: Are there any ways to remedy a bad sleep situation such as an extended hospital stay?
A: Mayo Team: Start with the realization that most people find it difficult to sleep well in the hospital. It is an unfamiliar place, there are medical interventions that disrupt sleep, and you may have pain/discomfort or otherwise not feel well. But there are a number of strategies which can help.
First, it is important for patients and their families to speak up about difficulties with sleep. Restful sleep is an important part of healing and if the team knows this is a problem, they can offer some possible solutions. Medical interventions which reduce pain or help you breathe more easily can help you sleep. Many medications adversely affect your sleep; it may be possible to change the timing in which certain drugs are administered so they have less impact on your sleep.
If you are interested in taking a medication to help you sleep, discuss this carefully with your doctor. Keep in mind that sleep medications can have side effects, may interact with other drugs and can potentially increase the risk of falls. A careful discussion on the risks and possible benefits is important. In general, using behavioral strategies to optimize sleep is the safest approach.
Q: How can a person get the best possible sleep while staying in a hospital or care center?
A: Mayo Team: If you are to have an extended hospital stay, requesting a private room with a window can be helpful toward limiting noise and interruptions, as well as keeping your day/night schedule intact. Extra pillows can allow you to position yourself in a way that is more comfortable. Warm blankets, eye masks and ear plugs can all help as well.
Some patients find relaxing music or a white noise machine to be helpful, and adjusting the room temperature to your comfort is important. Though it can be boring during the day in the hospital, resist the urge to sleep all day. This only makes it harder to sleep at night. If you can do activities (puzzles, reading, playing cards, talking on the phone) during the day, you will sleep better at night.
We also recommend asking your medical team if you can have some physical activity while you are hospitalized; working with physical therapy or taking walks, if able, as this activity can help you sleep better at night.
Q: What are ways hospitals are working to make sleep a priority for patients?
A: Mayo Team: Many hospitals are now using sleep enhancement order sets. For patients who do not need to have routine lab draws or vital signs measured at night, this is a way to make sure these patients are undisturbed at night. Often a sign is also placed outside the room that alerts providers that sleep enhancement is in effect. While medical care should always come first, if the interruption is something that could safely wait until morning, these efforts encourage this.
At Mayo Clinic, we are piloting several additional efforts to help with sleep in the hospital. Many of our units provide patients with sleep menus. These offer patients a variety of non-prescription options they can choose from to improve sleep. Options on the Sleep Menu include a small fan, relaxing music, meditation/guided imagery, massage, aromatherapy and calming teas. Patients are also asked about their regular bedtime routine at home and if they have previously found certain techniques that help them sleep. We found that having an intentional discussion about ways we could help patients sleep in the hospital works the best.
A: Erin Johnson MPH, MSN and RN, Patient: I have thought a lot about sleep issues in the hospital setting as a result of my experience. Born out of frustration and a simultaneous desire to propose something useful, I came up with a concept I’ve been calling The Sandman Team.
The Sandman Team would be a permanent interdisciplinary team of staff from a variety of floors and departments. The team would rotate throughout the hospital on a specific schedule, prioritizing floors that have long inpatient stays or where dependents are frequently inpatient with caregivers. One primary purpose of the team would be to gather and analyze subjective and objective data. Then, working with staff and departments, the team would support the implementation and monitoring of pilot projects and adjustments based on data. Data would come from sources such as patient and staff feedback, environmental data, or logged data from lighting systems. Adjustments could also be proposed based on evidence-based research about sleep in institutional settings.
The Sandman Team could work incrementally with other staff to gradually tweak workflow, cluster care, submit requests to purchase alternative materials, adjust lighting and fix or replace poor or ineffective design. The team could work on measuring and increasing sleep quality for all patients and family members over time. In other words, The Sandman Team could find ways to ensure that sleep becomes and remains an institutional priority.
Other purposes I envision for The Sandman Team:
- Keeping up-to-date on research on sleep in institutional settings
- Training staff and management about the detriments of long-term sleep deprivation or sleep interruptions
- Disseminating sleep information to hospital staff and management
- Attending and presenting to relevant meetings across departments
- Presenting about hospital-based sleep-related innovations at seminars and conferences
- Teaching patients about the importance of sleep via print materials, optional presentations or through the hospital’s TV station
- Supply discharged patients and families with realistic strategies to help them get back to good sleep schedules or improve sleep quality at home.
Ideas to Make Sleep a Top Institutional Priority
I believe institutional sleep deprivation and disruption occurs more in some departments and circumstances than others, but that hospitals can take the lead to improve sleep settings. They can incrementally integrate practices, processes, knowledge and design changes to better the sleep situation.
I understand the logistic and financial impact altering the design of a hospital would cause, but I would be remiss if I didn’t share my suggestions on how to improve layout and materials within a care setting.
There were many nights when nurses strove to protect our sleep, but ultimately failed despite their efforts due to design issues such as the placement of the nurse work station in relation to sleep surfaces (sound and light migration) and the size of the work station in relation to what is needed. Nurses and techs need a work station ample enough to accommodate supplies so supplies do not regularly fall on the floor due to lack of adequate space.
Other furniture purchases that could help in bettering sleep include avoiding noisy baby patient cribs with clanking metal sides, selecting patient privacy curtains that can be moved noiselessly and door handles and latches with slow-close so the responsibility for quiet door movement falls to design. Additionally, sharps boxes are noisy, especially when empty. I think either the sharps box needs a redesign, or staff needs to be counseled on good ways to manage noise while patients are asleep.
Reducing Light
Larger institutional alternations could include changing the placement of lighting in relation to sleep surfaces. Could patients or caregivers have control over the lighting? If the lighting cannot be controlled, can it be altered to shine away from sleep surfaces? If the bathroom has an automatic light, does the door open directly onto a sleep surface?
Not having natural light for days and weeks on end can affect the ability of patients and caregivers to stay on a regular sleep schedule. If possible, design should take natural biorhythms into account, allowing natural light to come in to each patient room.
Reducing Sound
I would like to see the pumps utilized for medication, food, etc. be set to a night setting to lessen the noise of beeps from the buttons. Also, it would be ideal if announcements usually made over an intercom could be sent via a text/electronic messaging most of the time, avoiding waking people up unnecessarily. Additionally, when a patient pushes the call bell, the loud beep and then the invariably loud voice answering from the nurse’s station seem louder than necessary in the quiet of night. Could this also have a night mode with quieter settings?
Finally, staff uniform shoe options should emphasize quiet tread to remove the responsibility of walking quietly from the staff and place it on the design of the shoe.
I believe if hospitals truly want to be caring, healing institutions, they will consider sleep to be a priority to support the health and well-being of any family member engaged in the care process. []
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To celebrate healthy sleep and help others learn about sleep’s vast importance, World Sleep Society is hosting an annual awareness day–World Sleep Day–on March 13, 2020.