Synopsis: A surprisingly high percentage of people who’ve been treated in intensive care units later suffer from post-traumatic stress disorder, often including hallucinations recalling horrible ICU incidents. This has led to coining a new syndrome–PICS, or post intensive care syndrome. Experts discuss why the syndrome appears to occur and what’s being done to treat and prevent it.
Host: Reed Pence. Guests: Dr. Joe Bienvenu, Associate Professor of Psychiatry, Johns Hopkins University; Dr. James Jackson, Assistant Professor of Medicine, Vanderbilt University
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Reed Pence: Every year, more than five million Americans are treated in hospital intensive care units, according to the Society of Critical Care Medicine. Only patients with an imminent risk of death are treated in the ICU, most often for respiratory distress, surgical recovery, heart problems, or severe infection and sepsis. Doctors are getting better and better at saving lives… but often at enormous cost, with patients tethered to tubes and machines. Dr. Joe Beinvenu, associate professor of psychiatry at Johns Hopkins University, says ICU survivors have been through a nightmare.
Bienvenu: It’s frightening to be in an ICU with a tube down your throat and all these procedures being done to you when you’re helpless and very very ill.
Jackson: Someone survives an episode of sepsis. His family is ecstatic. They’re so excited, the patient is obviously happy to be alive. Ant then they get home, they leave the convalescence period however long that takes, they try to return to their normal life, and often it’s only then that they realize they have a brand new constellation of problems they didn’t have before.
Pence: That’s psychologist Dr. James Jackson, assistant professor of medicine at Vanderbilt University.
Jackson: They may have newly acquired symptoms of PTSD. They may have depression; importantly they may have newly acquired cognitive impairment that they didn’t have before. They have a unique set of symptoms that typify ICU survivors and many of them don’t know where to turn to address those symptoms. In truth there are not a lot of places that specialize in treating the symptoms. There are a few that are coming on board, but not as many resources as there need to be.
Pence: Jackson is well aware that words like “ICU survivors” and “PTSD” conjure images of violence and terror rather than healing. But he says it’s true. ICU treatment often provokes post-traumatic stress disorder.
Jackson: There are reports that suggest that up to 45 or 50 percent of people may suffer from significant symptoms of PTSD and alternatively there are reports that peg that number as low as 10 or so percent. I personally think from the work we’ve done and from my own experience that number is probably somewhere between 10 and 20 percent.
Bienvenu: We found that 60 percent of the patients who had PTSD symptoms still have them at two-year follow up. So they can be quite prolonged. There was an earlier smaller study by some doctors in Germany, and they found in patients with acute respiratory distress syndrome, even eight years after acute respiratory distress syndrome 25% of the patients in their study had PTSD.
Pence: Most people associate PTSD with people who’ve gone through things like combat, sexual assault or a bad car crash. But balancing between life and death with a ventilator jammed down your windpipe can do the same thing. Some experts have even developed a name for it –“PICS” or post intensive care syndrome. And Bienvenu says many of the symptoms are the same as you’d see in anyone else with PTSD.
Bienvenu: Nightmares and flashbacks, feeling like they’re back in the hospital on the verge of death and so forth. Probably nightmares are most common, or just intrusive unwanted memories of the critical illness. But one thing that’s a little different about patients with substantial anxiety and PTSD symptoms after a critical illness is that sometimes people have awful memories of things that didn’t objectively occur, but they didn’t occur quite the way the patient remembers them.
Jackson: The other thing that people will often mention is re-experiencing symptoms particularly very visceral recollection of nightmares, or perhaps you could more accurately call them delusion. Patients believe that these things could not have happened; on a deep emotional level they very much feel like they did.
Pence: Bienvenu says patients with longer ICU stays, those whose consciousness is compromised, or those who’ve had breathing trouble, especially those who’ve been on a ventilator, are most at risk of nightmares, flashbacks, and hallucinations.
Bienvenu: It probably makes it even more frightening if you don’t know what’s happening and the brain fills in the gaps. So people have memories of being tortured, for example, or being imprisoned and that the doctors and nurses are trying to kill them.
Jackson: We have had patients before who have been treated by physically large nurses or physicians and they have been convinced that there was a giant in their room, for instance, literally a giant who was standing at their bedside threatening them. Or there are times that procedures are done, a catheter is placed in a patient for instance. In their heavily sedated state in the ICU they believe that was not a catheter that was placed, that they were sexually violated on some level.
Pence: Jackson says family members often tell the patient, “No, I was there the whole time, and that didn’t happen to you,” but it doesn’t matter.
Jackson: That reality testing is helpful on one hand and yet on the other hand, patients still feel like they experienced whatever is was that happened. That they were threatened, that they were frightened, that they were violated, that someone was trying to kill them. These are fairly common themes. And six months or a year after the ICU when people have recovered cognitively, they’re aware that there was really no giant in the room, there wasn’t a troll in the room, there were no ghosts in the room, and yet emotionally they still feel the anxiety that they felt when they thought that was happening.
Pence: Even so ICU survivors are often reluctant to tell anyone that they’re struggling. Bienvenu’s study shows that only about 40 percent of those suffering from PTSD ever see a psychiatrist, and even then, many mental health professionals are unaware of the syndrome. Vanderbilt is one of the few hospitals in the country, for example, that runs a clinic every week dedicated to post intensive care syndrome. What’s more, Jackson says, the images survivors recall are often exceptionally troubling. So they stay silent and never seek help.
Jackson: The delusions they have had in the ICU are sometimes so horrific and so bizarre they are quite embarrassing. They are sometimes of a sexual nature for instance. And they are very reluctant to tell a husband or wife or children about these sometimes for fear that the person will think that they are crazy. That they are out of their mind, and that works against getting help. The other issue that comes up here is that if they are not wanting to return to the hospital because that’s where they were critically ill, and if the psychiatrists office is in that hospital, or the psychology clinic in the hospital, that works against them as well, so there are a lot of things going on that can contribute to these people not getting help.
Pence: That’s another hallmark of post intensive care syndrome. Sufferers don’t want to have anything to do with the medical system ever again.
Jackson: We often see striking symptoms of avoidance related to not wanting to return to the hospital, related to being reluctant to go to the doctors when they are sick because of the fear that they will be told this is indeed pneumonia and you do have to go to the emergency room. Then the concern begins to take hold in these patients that the dominoes will start to fall, they’ll land in the ICU again, and that’s not really where they want to be. So they often are quite avoidance, sometimes they are almost phobic with regard to exposure to germs, with regard to exposure to other sick patients.
Pence: However, Jackson says that kind of avoidance behavior may produce exactly what the patient doesn’t want.
Jackson: People are very disinclined to go to the doctor, and so as a consequence their illness that they could have, perhaps addressed easily gets worse and worse and worse and then in turn they are more likely to be admitted to the hospital. So it really is a vicious cycle and if you talk to ICU survivors they will often tell you that they’re caught up in the cycle, but that they felt like they were a little bit powerless to change it because they are so phobic and anxious about returning to the doctor.
Pence: But why does post intensive care syndrome happen at all? Knowing that could provide some prescriptions to keep it from occurring. First of all, Jackson says, landing in intensive care is a severe psychological shock.
Jackson: Patients will often talk about situations where they were feeling fine on a Thursday, they were doing great, they went to work on Friday, they felt sick by Friday afternoon they were in the ER and by Friday night they were on a respirator. It really is that sudden. Critical illness takes hold that suddenly. And when it does, there’s really no way to mentally prepare for it, so part of this is the emergence of a life threatening illness that is incredibly abrupt. Very stressful for patients who are literally fighting for their lives and who had no way to plan for that. It’s very stressful for family members as well. So fear of death is one clear driver of PTSD in these patients. The experience of being on a mechanical ventilator or respirator, which is true for many people on the ICU, that is incredibly unsettling for patients, that dynamic of having a difficult time breathing.
Pence: The psychological shock appears to be worse for some patients than others. Perhaps surprisingly, young people are at more risk than the middle aged or elderly.
Jackson: If you’re 30 years old and you have a young child or two and you’re excited about your career and a long marriage ahead of you perhaps, you’re eager to see your kids grow up, the thought of dying suddenly is much more traumatic than it is for our 92 year old patients who believe they’re lived a very long life, a good life and frankly many of them will say I’m ready to go, ready to go meet my maker, I’m ready to be with my wife, or however they frame that. So the younger these patients are, the more traumatic this experience of being critically ill seems to be.
Pence: Another factor is sedation, an extremely common ICU treatment to keep patients from fighting breathing machines or pulling out their I-V lines. Jackson says it turns out that sedation has the opposite effect of what doctors have believed.
Jackson: For years there was an orthodoxy in the ICU. That orthodoxy was that if we can heavily sedate patients that help ensure that they don’t remember what happened to them in the ICU, then we will likely be doing them a favor with regard to their mental health. That was the orthodoxy. Well, there have been probably a dozen or so studies that have challenged that idea. What they’re demonstrated is that in fact when you heavily sedate someone, it isn’t that they don’t remember their experience of being in the ICU, it is that they are more likely to remember things that did not in fact happen. So the more you sedate them, the more likely they are to have these bizarre delusions, these psychotic ideas, they more likely that are to make misattributions and believe things are occurring that in fact are not occurring.
Pence: It appears that actual memories are a buffer against delusional ones. So Bienvenu says now, ICU doctors are cranking down the sedation.
Bienvenu: There’s been a move in the critical care medicine world to use as little sedative medicine as possible. So, to get away from giving continuous intravenous sedation running all the time, and a move to use as little as possible. So, it’s not necessarily not using any sedation, although that happens sometimes, but using as little as possible and trying to keep patients awake enough so that they can interact with the healthcare team and with their family members even by writing so they can process what’s going on as its happening, and also so they can keep their bodies moving.
Pence: Jackson says it also may be a good idea for doctors to do a psychological screening of intensive care patients as they check out and on follow-up visits. He also makes sure to talk to patients and families to warn them that PTSD can happen down the road. If nightmares start, or the patient begins to experience anxiety every time the doctor calls… they need to reach out for help. You can find out more at the Vanderbilt page. ICU delirium.org. I’m Reed Pence.