Treating Post-ICU Brain Dysfunction with Empathy
Until recently, there was one goal of care in medical, surgical, cardiovascular, and trauma ICUs: to save the patient’s life. Physicians across the board agree that critical illness requiring a stay in an intensive care unit (ICU) is life-changing. But within the last few decades, healthcare professionals have become more and more aware of the suffering of the many patients who struggle to find a new normal post-ICU. It has become clear within the field that simply surviving is no longer enough.
In the late 1990s, Dr. Wesley Ely, professor of pulmonary and critical care at Vanderbilt University Hospital, began to notice a disturbing trend: many ICU survivors he followed up with in his clinic were utterly unable to go back to their old lives. Patients reported an inability to focus, remember details, and keep themselves organized. Stay-at-home parents could no longer lead their families. Breadwinners, unable to function at work, were forced to retire early. Patients survived the ICU, only to return home incapacitated, feeling like burdens on their families without support for further recovery.
Though at the time researching delirium was unheard of, multi-institutional studies now tell us post-ICU brain dysfunction is a pervasive public health issue, affecting not only ICU patients themselves, but also their families and communities. However, the long-term cognitive ramifications of being delirious for a few days due to critical illness are tough to conceptualize. We all have a stake in this issue—most of us will experience having a loved one in the ICU as we become responsible for older relatives.
What is delirium?
Delirium is a form of brain dysfunction that manifests as a state of extreme confusion. A delirious patient can’t understand his or her surroundings, and may have delusions, hallucinations, and/or nightmares. It is most common in patients with acute respiratory failure, acute heart failure, and sepsis (severe infection).
Initially, even medical institutions thought putting grant money into Dr. Ely’s projects was a waste of resources. Delirium was just par for the course of the critically ill. And though it was quite prevalent in the ICU, there was no established way to measure it quantitatively. Dr. Chris Hughes, a critical care anesthesiologist in Dr. Ely’s Vanderbilt group, describes handling delirium in the ICU as “frustrating because there weren’t any particularly good explanations about what caused it or how to treat it.”
Dr. Ely and his team suspected delirium to be the culprit behind some of the negative outcomes they were seeing in post-ICU patients. But without a clinical tool to measure it, researching delirium in any scientifically legitimate capacity was impossible. When Dr. Ely drafted a research proposal and began to apply for funding, he found himself laughed out of the room. He realized he would need to create such a tool himself before meaningful research could be conducted.
The tool he devised was the Confusion Assessment Method for the ICU (CAM-ICU), a 2-minute bedside exam designed to confirm the presence of delirium in a critically ill patient. The CAM-ICU quantifies delirium, allowing researchers to study delirium with large patient data sets and adjust for variables like pre-existing conditions and ventilation.
With this tool in hand, doors began to open for Dr. Ely and his team, as well as medical professionals at other institutions. In 2004, Dr. Ely’s group at Vanderbilt published the results of a study linking delirium with higher mortality rates for ICU patients. At that point, it became clear to healthcare professionals that delirium in the ICU is “not only a real thing… but it also helps to kill you.” The floodgates opened, and the grant money for delirium research started flowing. Subsequent studies have supported delirium as “an independent predictor… for death, length of stay, cost of care, and long-term cognitive impairment.”
Changes in Treatment
Now that awareness of the consequences of delirium has spread through the field, several major changes have been made in how patients are treated in the ICU. These measures are preventative, aiming to decrease the incidence and duration of delirium for patients.
One difference in treatment is the use of pain medication and sedatives. Critical illness is by nature acutely unpleasant and undignified, so in the past, physicians were heavy-handed with sedation and pain medication for ICU patients. Hypothetically, being unaware and immobilized would prevent the patient from remembering the traumatic experience. However, research has since proven that “snowing” a patient with drugs actually increases the risk of delirium, and engenders lasting cognitive impairment.
Based on these findings, physicians have become much more conservative with sedation. Instead of trying to knock the patient out, doctors and nurses strive to maintain a normal sleep/wake cycle and to orient patients to their situation and surroundings in the ICU.
Additionally, physicians work to decrease the occurrence and duration of delirium by adhering to the “ABCDEF Bundle,” a list of preventative practices for care. The ABCDEF Bundle is new as of this decade, and is being adopted by ICUs around the country and the world. Though some of the components are intuitive (like A, “assess and treat pain”), others are completely opposite strategies compared to the way physicians treated ICU patients in the past.
For example, “E” stands for early mobility. Instead of confining patients to bed, physicians do everything in their power to get the patient lifting limbs, sitting in a chair, standing, and walking. Even patients who seem too weak to move are poked and prodded into some form of physical exercise.
“B” is also a game-changer: “both spontaneous awakening and spontaneous breathing trials.” According to this guideline, all sedatives and pain medications should be stopped once per day. In addition, mechanically ventilated patients should be tested daily on their ability to breathe independently by shutting off the machine. Both practices are of course kept within the bounds of reason and safety. But research shows that weaning patients off of intense drugs and respiratory support as quickly as possible reduces the incidence and duration of delirium, and therefore improves their overall outcome.
In 2013, the Vanderbilt ICU Delirium Research Group published a paper addressing one of the first questions asked by clinicians about delirium over a decade ago: was delirium responsible for the outcomes of those patients who, once discharged, were unable to do basic tasks, hold jobs, and lead within their communities?
To test the effect of delirium on long-term cognitive function, the study enrolled adults with respiratory failure or shock in the ICU. 74% of the patients became delirious in the ICU, with a median duration of 4 days. Those who survived were assessed for cognitive function at three and twelve months post-discharge.
These ICU survivors tested poorly at both time intervals, and an association of delirium with sustained cognitive impairment was revealed. One year after leaving the hospital, about one in three patients who experienced delirium in the ICU scored similarly to those with moderate traumatic brain injury on cognitive tests. About one in five patients scored similarly to those with mild Alzheimer’s disease.
“US Navy 030425-N-6967M-129” by Photographer’s Mate First Class Shane T. McCoy, courtesy of U.S. Navy.
These cognitive impairments directly linked to delirium are what Dr. Ely terms “acquired dementia.” Given the sheer number of patients in American ICUs, unmitigated delirium constitutes a public health crisis, especially as the limits of the healthcare system are tested by the aging population. Of the over 5 million ICU patients each year in the US, 80% of survivors will have lasting cognitive impairments.
For families, it can be difficult to understand why a loved one is unable to return to a baseline level of function after an ICU experience. After all, their routine and lifestyle is permanently changed. Reflecting on the patients that motivated him to investigate delirium, Dr. Ely expressed the pain of survivors whose kids were embarrassed of them because of their limitations, and the hardship of the financial burdens their families incur from both medical care and a lost source of income. Above all, Dr. Ely calls us to have empathy for ICU survivors.
“A hospitalization…is a trajectory changer for people’s lives,” he says. Assuming a patient can be so gravely ill, stay in the hospital, and come back the same way overlooks the suffering the patient has undergone. Helping a loved one maintain a sense of dignity and self-worth is vital to their long-term recovery and quality of life.
We do this by understanding that there has been a change in the way the ICU survivor can think and act after their experience. And we can help by getting them the physical, psychological, and cognitive therapies they must have post-ICU to keep these problems from progressing.
But just as the ABCDEF bundle incorporates preventative measures for delirium into ICU care, we as family members and caretakers need to take on the responsibility of keeping our loved ones as healthy as possible to protect them from the negative outcomes of a hospital stay. Dr. Hughes states that the best protection is good physical and mental fitness before an illness.
That means we have to be proactive. It means we must be supportive of our relatives as they age, and be strong, vocal advocates when they’re sick. Critical illness is a life-changer—and it can affect any and all of us. May we outside the hospital strive to treat survivors with empathy, just as doctors and nurses treat them as patients in the ICU.
- Ely, E. Wesley, MD, MPH. (2016, August 15). ICU Delirium Research [Phone Interview].
- ICU Delirium and Cognitive Impairment Study Group (2013). ABCDEFs of Prevention. Retrieved August 3, 2016 from http://www.icudelirium.org/.
- Hughes, Christopher, MD. ICU Delirium Research (2016, August 12). [Email Interview].
- Whitney, Kathy. (2015). Undone in the ICU. Vanderbilt Medicine Magazine. Retrieved August 3, 2016 from https://www.mc.vanderbilt.edu/vanderbiltmedicine/undone-in-the-icu/.
- Pandharipande, P.P., et. al. (2013). Long-Term Cognitive Impairment After Critical Illness. New England Journal of Medicine. Retrieved August 3, 2016 from http://www.nejm.org/doi/full/10.1056/NEJMoa1301372#t=article.
- Landro, Laura. (11/25/13). Hospitals Take on Post-ICU Syndrome, Helping Patients Recover. The Wall Street Journal. Retrieved August 3, 2016 from http://www.wsj.com/articles/SB10001424052702304465604579219932327341004.
- Girard, Timothy D., et al. (2010). Delirium as a Predictor of Long-Term Cognitive Impairment in Survivors of Critical Illness. Critical Care Medicine, 38(7), 1513-1520. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3638813/
Banner photo courtesy of Jeramiah Winston.