We Are So Stupid About Sleep -- And Hospitals Are Particularly Stupid About Patients' Need To Sleep
Sleep researcher Sara C. Mednick has a piece worth reading up at HuffPo about her own experience with sleep denied. Not her sleep -- her tiny infant son's. He was in the hospital a few times as an infant, and she was shocked at what she experienced, vis a vis how essential sleep is to our well-being and especially to that of recovering patients:
She describes the "complete and total disregard for my child's sleep while he was in the hospital ... 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.
There's more at the link.
In reading Mednick's piece, I was reminded of something I read in cognitive neuroscientist Colin Ellard's terrific book, Places of the Heart: The Psychogeography of Everyday Life.
He talks about a study by Roger Uhrich in which patients recovering from gall bladder operations recovered faster and felt better if they could see nature from their windows instead of just concrete and walls.
Getting back to the stuff Mednick talked about, I fight noise and when I'm writing and try to sleep well with the help of a number of tools: Bose asshole-canceling headphones Gregg got me for a present, Hearos' most protective earplugs under those, and a sleep mask I use at night and for my daytime naps.
At night, if there are seriously loud assholes outside or if Aida is snoring like a drunk brontosaurus, I will sometimes use a brown noise program on my phone, but very low. I suspect that this disturbs normal sleep somewhat, but no sleep is probably worse than less than high-quality sleep.
I also set my phone on airplane so I'm not getting the pulses from the phone company every so often. Read that somewhere. It might be for real; might be "I see unicorns!" bullshit. I realized that people who call the wrong number won't get through in the middle of the night if I airplane it, so airplane it, I do.
I'm getting read to get a call blocker, because my phone and my VOIP will only block so many robocalling and other time- and focus-stealing assholes; I just haven't decided which one.
Yeah, they also like to wake you up at 3 to give you meds or take x-rays so the results are ready in the morning and/or because that's when the guy making the rounds finally gets to you.
Hospitals are weirdly inhospitable places for patients.
jerry at August 29, 2016 10:53 PM
Hospitals are weirdly inhospitable places for patients.
This is so strange. I learned this when my friend Cathy Seipp was in and out of Cedars.
On a positive note, I also learned how vital nurses are to patient well-being.
Amy Alkon at August 30, 2016 5:22 AM
"I realized that people who call the wrong number won't get through in the middle of the night if I airplane it, so airplane it, I do."
You have a "Do Not Disturb" feature on your iPhone... One of the things it can do is kill all notifications for callers not in your Address Book. There are other features...
Radwaste at August 30, 2016 5:24 AM
They are correct but the tone grates on me. The hospital is "ready" for most health emergencies depending upon staffing and equipment. This readiness inconvenienced them??????
To comment about noise, light, and nursing activities is normal and they are right about needing to leave to get rest. I know I have begged to be able to go home ASAP preferring to receive a daily visit from a home health nurse and trust her ability to recognize if I'm in trouble.
But the tone struck me wrong for some reason. To complain about noise and light shows they missed how dependent they and the hospital are on the nurses attitude, work ethic, and knowledge as well as technical equipment and technicians.
They should be thankful they received good care at a well staffed well equipped facility. They should be thankful they took their child home. Sounded more like whining.
(Only 3 cups of coffee so ...)
Bob in Texas at August 30, 2016 5:41 AM
My sister died last week, early Tuesday morning. Breast cancer which spread to her liver and destroyed it. But one of the things I noticed is that as she lay there with only hours left was the elderly woman she shared a room with was a constant and loud complainer.
I failed to see the reason why she felt the need to constantly yell her complaints. As far as I can tell, none of the long-suffering nursing staff was hard of hearing.
Thankfully, the hospital mercifully decided not wait for insurance to put my sister in a private room, away from this obnoxious harridan, until we got her to hospice. (The same hospice I once volunteered at, and the same hospice Terri Schaivo died in.) Hospice was wonderful. Better pallative care, her own private room and a gorgeous environment. I'm at least grateful that my sister's last few hours were comfortable ones.
Private rooms might also be good for hospitals, in case you get that miserable hag that was sharing a room with my sister.
Patrick at August 30, 2016 6:33 AM
Patrick, first of all, my sincere condolences regarding your sister. Second, regarding the devices: The state of integration on a lot of those is still not all that good. You don't know for sure whether they had the ability to send an alert to the nurse's station if something went wrong. It's a problem because when that is the case, yes, the nurses will keep the alert tones up loud so that they can hear from down the hall. But a lot of devices, as noted in the article, still issue various beeps and tones for normal operation. The industry has come to realize that making a lot of beeps and tones all the time leads to alarm fatigue in the caregivers, which slows down emergency reaction times, and they're starting to get better about that. But devices are expensive and a lot of hospitals have older devices that they're going to keep using until they give out.
I'm not sure I got the point about the light problem. Couldn't they shut off the room lights? It is true that often there are some night lights that can't be shut off.
Cousin Dave at August 30, 2016 6:55 AM
Thank you, Cousin Dave. As the youngest of a very large brood of children (my mother had nine kids), I anticipated burying a few (if not all) of my siblings, but I didn't imagine that Mary Beth would be the first. She's not the oldest. She's fourth. And she had just turned sixty. Too young to go.
Patrick at August 30, 2016 7:56 AM
Patrick,
Sorry to hear about your sister. At least she spent her final days in a quiet place surrounded by those who love her. Peace be with you and your family.
Sheep Mom at August 30, 2016 10:11 AM
Patrick, glad she was able to experience some kindness and caring. Hope you do as well.
Bob in Texas at August 30, 2016 10:32 AM
So sorry to hear this, Patrick. Terrible loss, way too soon. So sorry.
gooseegg at August 30, 2016 10:38 AM
Patrick, I'll add to the condolences. Hospice is indeed a wonderful place for one's last days.
You have a "Do Not Disturb" feature on your iPhone... One of the things it can do is kill all notifications for callers not in your Address Book. There are other features...
Amy, do look into this. I have DND set for my phone between 11 pm and 8 am every day. However, there's a setting that allows you to provide exceptions for important people (elderly relatives, spouse, partner, whatever) so they automatically ring through.
On a few occasions I've awoken to find mis-sent (likely drunken) texts from strangers at 3 am, along with a few misdialed calls. Had DND not been on, they would've woken me up.
Kevin at August 30, 2016 10:59 AM
ICU psychosis is a real thing, and hard to fix. If you're in the ICU, you're really sick. You NEED the machines/med etc. And given that nurses are rarely/never AT the nurses station, sending alarms there wouldn't do much. Would they prefer the nurse to come in after a nice quiet 6-hour stretch of uninterrupted "sleep" time, to find their baby had died? They do come across as whiny, and seemingly more worried about their lack if sleep even, than their kids.
Those people you see sitting at the nurses station in scrubs? Unit clerks. Not nurses.
momof4 at August 30, 2016 11:17 AM
Thanks, everyone. When my mother died a year and a half ago, it was much easier to process. She was 89 and went in her sleep. Mary Beth was 60 and went through three years of struggling with cancer. I'm looking forward to the day when this is just depressing and sad. For now, this just fucking sucks.
Patrick at August 30, 2016 12:23 PM
If I only get a few hours sleep for some reason, I feel like I need to go to the hospital. Sleep is vital for healing. Hospitals like to leave your door open if they can so they can hear the beeps and monitor you (which is good) but then you better be a deep sleeper because lots goes on out in the hall and the light comes in.
There is an inherited illness where you no longer are able to sleep (https://en.wikipedia.org/wiki/Fatal_familial_insomnia). Death comes in less than a year. If you are in the hospital for very long, the lack of sleep could contribute to your poor recovery.
Craig Loehle at August 30, 2016 1:03 PM
I had a major problem with a hospital stay in 2012 when I was admitted with anemia and a possible heart condition. They put an IV in for my first few hours there, and the machine kept buzzing, effectively killing my ability to sleep during that first night. I was so tired that I slept the next day through after they removed that IV.
mpetrie98 at August 30, 2016 8:19 PM
Having worked in hospitals for 17 yrs I say:
1. It's a hospital, not a hotel. Sleep at home, be at the hospital, in shifts, awake.
2. We care about the physiological needs of the patient. That is of paramount importance. Sleep comes after that.
3. Women relatives need leverage, emotional equity, and relationship equity. They 'bank' it. If hospitals were quiet and perfect, women'd have no leverage for the next 50 years of their lives &'d be basket cases IN the hospital grasping at straws trying to get some kind, any kind, of control.
4. We have to give you meds at specific times because of lab values, because of thresholds, because of the treatment plan, because of other issues you have. Medication levels have to be above a certain threshold (amount/level) to be effective, medication interventions have required protocols that must be followed during the administration process.
5. The personality type of the hospital employees is typically not the same personality type that is dialed in to the emotions or positions of others. Ya can't be touchy-feely and make it thru the science prerequisites or the actual nursing coursework. You can't even date. You CAN study-37 hrs a week, every week, for 6 yrs straight.
6. The nursing staff sits in scrubs in the nursing station. There is one Unit Secretary who doubles as a monitor tech if there are telemetry monitors. There is one Unit Clerk.
7. That idiot adjusted their medication pump? Good Lord. Don't do that.
adambein at August 30, 2016 8:22 PM
I'm sorry about your sister, Patrick. Nobody deserves to have that happen to them. As a cancer survivor, I would not wish that on my worst enemy.
mpetrie98 at August 30, 2016 8:28 PM
adambein,
1) People who are in the hospital don't always have the option of going home. Some people are there around the clock. They need to sleep.
2) Sleep is a physiological need. I find it hard to believe that you can work in a hospital for 17 years and not know that. What was your job in those 17 years? Waxing the floors?
3) I don't even understand what you're trying to say here.
Patrick at August 31, 2016 3:53 AM
Hospitals do other equally stupid things. Like making patients track down nurses to get their doctor-ordered dose of pain medication (happened to me).
When one of my children was born, there was a slight case of jaundice. So, they wanted to to a blood test every so-many hours. Fine. BUT... they kept giving the baby glucose (as a pain-killer) with the blood draws (and not telling me). This totally messed up my attempts to nurse as the glucose knocked the baby out and made nursing completely uninteresting. THIS meant my milk didn't come in well (longer story there, but it really didn't help that the baby wasn't interested in eating for an extra 2-3 hours).
Frankly, I'd rather the baby have pain (because glucose doesn't kill pain anyway, it just makes you tired) and NURSE to soothe (and, you know, get nutrition and antibodies and stuff), but what do I know, I'm just the parent.
Shannon at August 31, 2016 5:56 AM
Patrick, I'm so sorry. Words fail.
~~~~~
Patrick - Thank you for your response at 3:53.
When I think back to the hell that was three weeks of 24/7 unceasing alarms and monitors on the oncology floor as my wife tried to get relief for unrelenting migraine- and meningitis-level pain, I want to take a baseball bat to my memory of the room.
The oncologist kindly explained the term "alarm-fatigue" to explain why the nurses *did not turn off the alarms* of patients sometimes until I asked.
These alarms were going off on the devices of patients in other rooms across or down the hallway, alarms I heard through a closed door. Not regular monitors mind you - actual alarms meant to alert staff to something supposedly requiring immediate attention.
The floor was replete with signs about how silence is necessary for healing. Irony has never sliced so deep.
In the three weeks I slept by her bedside - fitfully - I dreamed once. The beeps of the monitors and alarms were in my dreams.
Michelle at August 31, 2016 11:45 AM
Not to belabor the point, but if all you really need is sleep, you should be at home in your own bed.
If they are trying to save your life, you need to put up with the beeping.
If you are terminal, and all they are doing at the hospital is annoying you at great expense, you should be in Hospice.
Isab at August 31, 2016 11:58 AM
"If they are trying to save your life, you need to put up with the beeping."
Only if the design flaws remain unaddressed.
Those constant grabs for attention are rarely helpful and not harmless.
Michelle at August 31, 2016 9:25 PM
"The oncologist kindly explained the term "alarm-fatigue" to explain why the nurses *did not turn off the alarms* of patients sometimes until I asked."
Of course, the oncologist had the definition of the term exactly backwards. More and louder alarms do not mitigate alarm fatigue; they cause alarm fatigue.
Cousin Dave at August 31, 2016 9:40 PM
"If they are trying to save your life, you need to put up with the beeping."
Only if the design flaws remain unaddressed.
Those constant grabs for attention are rarely helpful and not harmless.
Michelle at August 31, 2016 9:25 PM
As an attorney you have to understand that the reason for all those beeping alarms is called *legal liability*. They are now the standard of care, and arent going away.
Turning them off would require* at least* a CNA stationed in every room, 24/7 for the hospital to aviod legal liability for someone dying unattended.
There is no good solution that will fix this, because the alternative is not affordable by either the hospital or the patients.
You have a really sick relative or friend in the hospital? Be there. It's your best hope.
Isab at August 31, 2016 11:39 PM
I recall when my wife was in the hospital after removal of her gall bladder she had trouble sleeping despite the really good drugs. I would come in and read to her to help her get some sleep. Still, sometimes saving the patient's life is more important than insuring that he or she gets a good nights sleep. It would be great if hospitals had nano-sensors that transmitted the data to the nurses' station. Someday we will.
BTW, the Bose headphones are amazing. I use them at work with a little white noise (OK, occasionally some metal) to mask all the annoying crap around me.
parabarbarian at September 1, 2016 4:31 AM
"As an attorney you have to understand...
You have a really sick relative or friend in the hospital? Be there. It's your best hope."
Isab at August 31, 2016 11:39 PM
I'm an attorney, with friends and family that work in health care from many angles - legal, business, tech, education, and direct care.
Everything you describe was created and can be altered. Now is the time, and both legal and medical standards of care have evolved rapidly and need to continue to do so/ get out of the way in light of recent tech innovations.
Never settle for being a passive consumer of the systems put in place before you, where you can reach out and advocate for better and life depends on it.
Some changes are obvious and quick - the television does not need to be blaring in the waiting room of the neurology office (chronic headaches, anyone?). The button to open the door needs to be visible to people with poor eyesight and within reach of people with mobility issues. Etc. The beeping needs to be heard by the nurses, not by the person being hospitalized to try to diagnose migraine level headache pain.
For the more complicated stuff - In regard to tech innovations, we're well into the start of a seismic collision as the programming languages of personalized health care devices and consumer expectations clash with the "legacy systems" (old programming languages) of large, heavy, older systems (hospitals and other bureaucracies).
I agree that if you are ever hospitalized, having 24/7 personal care from a family member or good friend is possibly your only hope. The two times I left my wife's bedside things went wrong that would not have if I had been there - for all the beeping and charts, people aren't reading or otherwise passing the baton completely, and it is heartbreaking what can happen when one new development or piece of information is not passed from one care taker to the next.
Last but not least - the idea that you know whether you're getting discrete care, or whether you're dying - it doesn't always work that way. Maybe the doctors can't bring themselves to tell you what you need to know. Maybe someone screws up and what was fixable becomes fatal. Either way, switching to a "concurrent care" model of health insurance is a simple change that can free up doctors and patients to have conversations about a continuum of options and care before things get to hectic to think clearly or plan calmly.
Michelle at September 2, 2016 9:07 AM
*too hectic to think
Michelle at September 2, 2016 9:11 AM
"Everything you describe was created and can be altered. Now is the time, and both legal and medical standards of care have evolved rapidly and need to continue to do so/ get out of the way in light of recent tech innovations."
If you were a medical malpractice attorney, like my father in law was, you would realize that the standard of care in a hospital moves at a snails pace, held back by the tort laws, and our moribund leagal system,mwhich really needs to go to loser pays. It would easily eliminate 80 percent of medical malpractice cases.
Until something better than the audible alarms replaces them, such as a bluetooth direct connection to the crash cart, the noise isnt going away,
I repeat my asertion that if you want to sleep, and that is what you need, you belong at home.
If they are trying to save your life, the noise is a small price to pay, and if you are dying, and want to do so in peace, either go home, or go to Hospice, ( or get yourself some noise cancelling head phones)
Isab at September 2, 2016 12:44 PM
My FIL worked in health policy law. I've had the benefit of being able to talk with people who work in health care as providers, attorneys, historians, tech developers, advocates, and successful activists.
The "until something better replaces them" is exactly where I'm going to work, talking to people about quick fixes to dumb (low tech) problems, and asking questions about "smart" problems - such as new tech innovations (people writing apps, consumers buying health tech devices that hospitals are slow to integrate) that cannot interface with legacy software systems in large, old bureaucracies.
The tech already exists to move the audible beeping away from the patient, who needs to sleep (because all human beings need to sleep, especially people who are ill or healing) and to the health care professionals who need the info.
Consumer demand channeled by people who learn how to use social media is a powerful force, one I'm glad more people are learning to leverage.
Michelle at September 4, 2016 8:24 PM
My friend got awakened by a call from a sleep clinic this morning. Seriously.
And Michelle, interesting post.
Isab, there are many people who need to heal, who cannot just be home in bed, for whom sleep is essential.
Amy Alkon at September 14, 2016 10:53 AM
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