The Mental Suffering Of ICU Patients And How Engagement By Others May Protect The Brain
Those in a cognitively impaired state are sometimes treated like meat, points out Melissa Akers in a conversation on Aeon.
I spent over 6 weeks in ICU and only speak from a patient perspective.The illness that put me in ICU did not involve head trauma, but I have long term cognitive & processing impairment. In an effort to understand and cope, I have talked repeatedly with my family, had extensive counseling and have been involved with professionals who are ground breaking in the study of the effects of ICU and it's impact. Dr. Jim Jackson is the best source for this information.Altering the environment? From a patient's perspective. Yes if It's like multiple beds in an ER Trauma unit. But smaller changes like tweaking sedation med doses; acting like a deathly ill person is awake when you're working with them; training other personnel who enter ICU rooms to introduce themselves and what they're doing, though the patient looks gone to the world; keeping noise to a low hum as though a child is asleep in the next room rather than roaring with laughter standing at the open door of someone; those kinds of environmental changes can make more difference than you think. And I think they will make more difference than most patients could tell you.
I have been told that my family talked to me and around me in a normal fashion. I was incredibly blessed to have with me virtually 24/7. I'm told that the doctors and nurses also talked to me normally as they worked with me. Interestingly, technicians and personnel who came in my room and did not interact with me were the ones that I felt were threatening and I thought they were the captive camp overseers.The beautiful wood paneling on the wall became a box I was kept in. Understandably, my restraints that kept me from removing ventilation tubing, etc. became part of the delusion. Loud noises I translated as negative in some way. When I was roused, I was able to convey agitation at a twinkling Christmas tree on the wall for me. Months later I told my family that pictures drawn for me and a large silk flower arrangement made for me were agitating.
Waking up from an ICU stay? Wow, I lived. Recovery, now there's the wild ride; no professional driving that train. Some things have probably changed. Take heart, work hard, get help; yes, it's real and no, you're not crazy.
This conversation has a companion Aeon article by Rebecca Guenard:
Of course, doctors have known for years that the ICU triggers a disrupted mental state. In the 1960s, ICU delirium was labelled 'The Disease of Medical Progress' - with memory loss deemed a fair price for life. But recent studies have shown that the effect is widespread, and often permanent.According to a study from Vanderbilt University Medical Center in Nashville, published in 2013 in the New England Journal of Medicine, 74 per cent of those who enter the ICU suffer delirium during their stay, and more than half leave so impaired that their cognitive ability is comparable to that of mild Alzheimer's disease. Akers's executive functioning skills are gone. She cannot prioritise a set of tasks or determine their duration. Working is no longer an option, and her experience is common.
...Recent findings have provoked changes on the ground: many ICU protocols now involve minimising sedation, waking patients often, removing mechanical ventilation, and getting patients on their feet as quickly as possible.
...But most interesting is the possibility that a patient's sense of community could protect the brain. Akers's frightening captivity images don't infiltrate memories of regular family visits. She recalls her daughter-in-law standing in a red coat, her father offering her apple fritters each morning, her son reading to her, her mother and daughter bathing her. Early on in her ICU stay, Akers's husband hung a picture of her in healthy days above her head, juxtaposing an expressionless, intubated face with that of a smiling, vigorous person. Reminders of health seemed to block hallucinations. In European ICUs, family members record daily events in a diary and read it aloud as a map back to reality if the patient becomes confused.
I had a dear friend who -- tragically -- suffered brain damage and was put in a nursing home in New York for about six months until she died.
She may not have been conscious of who I was (or who the other friends were who visited her and sat with her), but I feel good that I we there talking with her and holding her hand.
If she could hear us, the tone of voice she heard, and the fact we were there touching her, may have made her feel comforted and less scared and detached from being human.
But at the same time how many man hours will it take to stop and explain to everyone in beds 1-9 what you are going to do once you reach bed 10?
And is it really reasonable to expect people who have to be stationed outside the ICU in case of emergency to be forbidden social interaction with anyone for the entirety of their shift?
lujlp at February 9, 2016 11:51 PM
"And is it really reasonable to expect people who have to be stationed outside the ICU in case of emergency to be forbidden social interaction with anyone for the entirety of their shift?"
I think it's just a call to understand that that's a person in that bed, and to treat them accordingly. Like they can hear you. It's really not all that different than the people who park on our street and who leave the bar near me at night and hoot and holler right outside our windows (three feet from my neighbor's window, streetside) at 1 a.m. We don't expect conversation to cease. We just would like people to not stand and shout and wake us up in the wee hours.
If people who work in the ICU and the hospital are told that patients can hear them -- if there's an understanding of this -- assuming they aren't terrible people, they aren't going to want to disturb people in their most fragile condition.
Sometimes, that can't be helped. But I think an understanding -- in terms of personnel and hospital ICU design -- are important.
Amy Alkon at February 9, 2016 11:58 PM
I've spent about two weeks in ICU and yes, if the first thing for a caregiver is "do no harm", then yes, they need to really rethink what happens in the ICU (and in the regular wards too.)
I am very grateful for the care these people gave me, but yeah, they really can be insensitive assholes.
Maybe that should be an insurance rider: go to ICU and will pay to have non-assholes treat you.
jerry at February 10, 2016 12:52 AM
Yes staff should use their "quiet" voices, explain who/what, and most importantly engage the patient.
The most pleasant part of my extended "visit" was the cleaning lady that conversed w/me while she worked.
The "that's not part of their job" behavior missed obvious problems and caused discomforts large and small.
Bob in Texas at February 10, 2016 4:32 AM
The ICU is god-awful, and in some ways that simply can't be changed. But those RNs are the best of the best at what they do-which is saving your life/keeping you alive once it's saved. Yes, many of them need a class on bedside manner, but they have an awful job, and lots of their patients die or are in persistant vegetative states and should have died, or are old and literally rotting to death while the RN does what she has to do because the family won't just let them go. It gets to you.
Plus, few ICU RNs are on one-to-one care, and they absolutely should be. Thank hospitals for not wanting to pay for that. If you've got 2 people circling the drain, the stress level is beyond comprehension for most who haven't done it. And they do it 14 hours.
From the stories I'm reading above, it appears some people who don't need to be in the ICU, are in the ICU. That's a problem, and why hospitals have developed step-down care units, for people not sick enough for the ICU but who need more involved care than the regular floor. Step-down units usually have a 3-1 nurse ratio, as opposed to 6-to-1 on the regular med/surg floors. And yes, stopping to explain every little thing in the ICU might mean the other patient dies, and it's why ICUs should have 1-to-1 care. .
I spent 2 weeks in the ICU when I was 17 for toxic shock that was misdiagnosed for days and I was practically dead by the time I was hospitalized. The nurses were wonderful. All I remember is the PAIN. Dying is painful, don't ever let anyone tell you otherwise. Once I stopped dying and stated healing, the pain was much less.
momof4 at February 10, 2016 6:02 AM
I'm impressed that the people working in health care actually manage to care over such a long time and with so many patients. I - my capacity to be empathetic - would be exhausted fairly quickly. I suspect one would have to raise pay, but in a way that doesn't impact the human element that motivates them. A solution may be to hire more people, keep the pay "steady" while reducing working hours. This could work for women, especially.
Stephan at February 10, 2016 7:08 AM
Something many people - even medical personnel - do not know: There are different levels of unconsciousness. It is not uncommon for someone to be aware, but unable to move or communicate.
You wouldn't walk into an aware person's room and start doing things to them without talking to them first. You shouldn't do this to an unconscious person either. If they really are totally unconscious, no harm done. If they are awake, and just trapped in a non-responsive body, it can be tremendously important.
I'm not medical, but this is important for everyone. If you're helping someone at an accident, and they are unconscious - maybe they can still hear what you say. If so, they are probably terrified, and desperate to know what's happening to and around them.
a_random_guy at February 10, 2016 7:12 AM
I don't know why people immediately jump to the conclusion that the ICU itself is the cause of the problems. Most often, it is the drugs, anesthesia, and pain killers.
My mother was flat out bonkers for most of a two week hospital stay after major surgery.
I also have friends whose elderly relatives have gone from fine before surgery to full blown Alzheimer's afterward.
While I expect the ICU staff to do their medical job competently, this does not include expecting them to be a social or psychiatric support system for my mother, me or any of my other hospitalized relatives.
I really want them to focus on not giving them the wrong meds or the wrong dosage.
Just like I don't want the public school system to focus on my childs self esteem or sex Ed. They are barely competent if that at teaching them reading and math,
If you have a sick relative or friend in the ICU, or the hospital I recommend being there as much as the rules allow. Don't expect the medical staff to do their job, and yours too.
Isab at February 10, 2016 8:39 AM
my capacity to be empathetic - would be exhausted fairly quickly
I've pretty much lost mine entirely
lujlp at February 10, 2016 9:16 AM
"...or are old and literally rotting to death while the RN does what she has to do because the family won't just let them go."
Consider this for a moment.
Clamoring for more and more access to technology, often at the expense of nameless "others", we have unwittingly locked ourselves into the horror ward: mute, blind, in horrific and unending pain with no recovery possible, we will be preserved as long as there is power to life-support systems unless we have taken exceptional measures to prevent saving us.
"Back in the day", the family doctor would gather the family and carefully explain that Meemaw wasn't going to get better. The eldest son or daughter would be taken aside and quietly advised how Meemaw could slide into Heaven quietly. A few hours later, morphine will have done its job and the family could get on with life.
Broken and displaced families, corporate and government involvement in medicine has made everything a matter of public record, with dozens empowered to jail those who seek such mercy as was once extended to Meemaw.
It's that part of medicine which never wins, at least not today.
(Yes, there are exceptions.)
Radwaste at February 10, 2016 11:14 AM
A big problem is anesthesia which can cause mental debilitation for weeks to months after surgery. Some people (especially old) get it worse than others.
In addition, lack of sleep inhibits healing and makes you foggy. The need to have lights on and beeping machines is almost guaranteed to interfere with sleep.
Craig Loehle at February 10, 2016 11:24 AM
My husband spent two days in ICU when he had a heart attack. He was placed into a medically-induced coma and lowered body temperature to minimize potential neurological damage. I was warned this process in and of itself would affect his short term memory to where he'd lose days of his memory and that it could take months afterward for his memory to return. This turned out to be very true in his case. He remembers nothing for 2-3 days before his heart attack and then for 5 more days after his heart attack. His memory is spotty for about two months after that, but then back to normal. While he was in there the nurses and doctors always told him what they were doing to him as they are doing it like "I'm going to change out your IV bag now and give you another dose of sedatives to keep you relaxed." He was technically considered comatose and unresponsive, but he was talked to as if he were conscious. I was also encouraged to talk to him quietly and/or hold his hand so he wouldn't feel alone. When I was there I read him the news and told him about what happened over the day since I had last visited. At that hospital they did make an effort to treat the patients as if they were aware even if they weren't.
BunnyGirl at February 10, 2016 11:58 AM
BunnyGirl: "I was also encouraged to talk to him quietly and/or hold his hand so he wouldn't feel alone. When I was there I read him the news and told him about what happened over the day since I had last visited."
Did that help you?
Stephan at February 10, 2016 12:30 PM
Help me with what? I was asked by his doctors to do it since research shows patients have better outcomes when people spend time talking to them. It had nothing to do with me or whether it made me feel better or not. It actually made me feel kind of silly like I was talking to myself.
BunnyGirl at February 10, 2016 9:22 PM
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