For patients who become seriously ill with COVID-19, survival may only mark the start of a complex recovery path.
Along with potentially coping with cardiac, pulmonary and other physical effects, psychologists report that patients may have to sort through cognitive changes, such as difficulties with attention and memory, as well as mental health symptoms for months to come. Some difficulties, such as post-traumatic stress disorder, may be rooted in their experiences with hospital care and intensive care treatments. Psychologists fear that other challenges, such as survivor guilt, may flare once patients are discharged into a world still reeling from the virus.
But even though COVID-19 is a new disease, rehabilitation and health psychologists benefit from existing knowledge as they strive to help these patients, says Megan Hosey, PhD, an inpatient rehabilitation psychologist at Johns Hopkins Hospital in Baltimore. Prior research into Post Intensive Care Syndrome and acute respiratory distress syndrome can guide psychologists in their treatment, which may incorporate various strategies, from cognitive behavioral therapy to exposure therapy to breathing techniques, Hosey says.
“Breathlessness won’t be the only symptom,” says Hosey, who also works with clinicians on the hospital’s Post-Acute COVID team. “A lot of our survivors, even those who had what we would have considered mild to moderate symptoms [of the virus], are describing things like fatigue, brain fog, sleep disturbance.”
“If we are going to effectively treat survivors, we need a comprehensive model for management,” Hosey says. That includes “teaching our patients early on in their recovery that there’s not going to be a medication fix,” she says, but that they can learn to adapt their approach to life to help overcome symptoms.
Psychologists also can assist patients with processing what they’ve been through, which may involve reconstructing gaps in their recollection, says Nancy Merbitz, PhD, a rehabilitation psychologist at the Lake County VA Outpatient Clinic in Ohio. Ask open-ended questions and really listen as patients try to move beyond their scary encounter with the virus, she suggests.
“Their world has been turned upside down,” Merbitz says. “There is inherent tragedy with this experience. And people are going to have to put together a sense of meaning and security as best they can. There is no hopping over that.”
Viral aftereffects
Intensive care unit patients already face a higher risk of delirium, with 20% to 40% of critically ill patients overall developing it and as many as 80% of those who required a mechanical ventilator, according to a review of delirium research (Pandharipande, P.P., et al., Intensive Care Medicine , Vol. 43, No. 9, 2017opens in new window). A bundle of preventive measures to guard against delirium—an acute and fluctuating change in cognition and awareness—has been promoted for critically ill patients in recent years, with strategies that include less reliance on sedating drugs, earlier mobility and family engagement, among others.
Patients treated for COVID-19 appear to be particularly vulnerable to delirium, likely due in large part that some prevention measures are less feasible amid the focus on reducing spread of the virus, says Abigail Hardin, PhD, a rehabilitation psychologist at Rush University Medical Center in Chicago. With clinicians wearing masks and other protective gear, it’s more difficult for them to connect with patients, she says. Since family members aren’t typically allowed to visit, they can’t practice the sort of family engagement that can be helpful, such as telling stories or reminding the patient that their favorite show is about to start, Hardin says.
While there’s been a trend in critical care medicine moving away from using large doses of sedating drugs with patients on ventilators, in an effort to reduce delirium, that’s also proven more difficult for several reasons, including that staffs are stretched thin with the influx of COVID-19 patients, Merbitz says. Another contributor, she says, is a treatment strategy called “proning” in which patients are positioned on their stomachs to assist breathing and possibly prevent the need for a ventilator.
“But people apparently are more likely to get agitated that way,” Merbitz says. “Most people don’t sleep on their stomachs, a lot of people aren’t comfortable on their stomachs. They are using sedation to keep them there without fighting it.”
When Rush University Medical Center established a separate inpatient rehabilitation unit to treat patients recovering from COVID-19, they screened for hallmarks of Post Intensive Care Syndrome, Hardin says. The syndrome describes a mix of potential aftereffects from intensive care treatments, ranging from mental health challenges such as anxiety and post-traumatic stress disorder to cognitive issues and physical changes, such as muscle weakness, severe fatigue and neuropathies. Numerous factors may place patients at higher risk, such as prior delirium, the length of the ICU stay, sedation and mechanical ventilation, among other factors. (Henk, J.S., et al., Journal of Rehabilitation Medicine, Vol. 52, No. 4, 2020opens in new window).
At Rush, they’d anticipated reports of delirium as they began screening patients, Hardin says. “But what surprised me after seeing some of these patients was really how delirious they had been, and how long it was taking for that delirium to clear,” she says.
Even after they recovered enough to start rehabilitation, some patients continued to experience hallucinations or delusions, she says.
For insights into what assistance these patients may require moving forward, Hosey points to data from survivors of Severe Acute Respiratory Syndrome (SARS) during the 2003 epidemic. In one analysis, which followed 117 SARS Canadian survivors for their first year, one-third still reported a decrement in mental health after 12 months, according to the findings (Tansey, C.M., et al., JAMA Internal Medicine, Vol. 167, No. 12, 2007opens in new window). Nearly half of the survivors continued to mention shortness of breath over the course of the first year, though their pulmonary function results were largely normal.
“They were still reporting severe breathlessness that was related to anxiety and other things that got in the way of their quality of life,” Hosey says. “It gives us a little bit of a heads up of what we might see for some of our COVID patients.”
Coping with the fallout
How sick a patient was in the hospital won’t necessarily indicate how much support they’ll need later, Hosey says. “The person’s perception of their symptoms will dictate a lot more about their recovery than their actual symptom load, no matter how severe the disease was.”
For instance, perceived difficulties with breathing can become intertwined with anxiety, Hosey says. “The brain is wired to become anxious as soon as we become breathless.” And medication for anxiety will likely not be beneficial, if that’s how the breathlessness is being triggered, she says.
Instead, psychologists can work with the patient on relaxation strategies and breathing exercises, such as the pursed lip breathing techniqueopens in new window that’s sometimes taught to individuals with chronic obstructive pulmonary disease, Hosey says. Also, practice exposure therapy with patients, encouraging them to slowly boost their activity level by working with a physical therapist, in essence teaching them that they can feel breathless without dying. “It’s helping that person feel like they have a sense of mastery over that breathlessness symptom,” she says.
Cognitive behavioral techniques also can be used, such as helping patients to reframe their thoughts about breathlessness and other physical symptoms, Hosey says. For instance, rather than thinking about passing out or dying once they become breathless, patients can identify an alternative mantra, such as “This is scary, but won’t kill me.” Or, “This hurts me, but won’t harm me.”
To gain a sense of whether patients may have gaps in their memory of their hospital stay, Merbitz suggests asking open-ended questions. Among them: What do you remember about the ICU? Is there a stretch that you can’t recall? “Or, ‘Do they feel like strange things happened to them in the ICU?’” she suggests, to initiate a discussion about delirium.
With patients who did experience delusions or hallucinations, reassure them that delirium is a medical phenomenon related to their stay, Merbitz says. Sometimes, she says, “people will tend to think that they’ve somehow lost their minds and they were psychologically vulnerable. They can be very ashamed.”
As part of the clinical interview, psychologists should get a picture of the individual’s life and functioning before the virus, to understand how much the illness has altered it, says Renee Madathil, PhD, a rehabilitation neuropsychologist who works on the inpatient rehabilitation unit at University of Rochester Medical Center in New York. As they recover, survivors reenter a world where the reminders of what they endured are infinite.
“The triggers are everywhere, it’s on the news all the time,” Madathil says, adding that some struggle with survivor’s guilt. “They don’t understand, ‘Why did this person die and I lived?’”
Rebuilding their lives
Depending upon the extent of the physiological and psychological effects, psychologists may have a lot of issues to unravel and address, Hosey says. One way to frame the treatment approach is to talk to the patient, finding out which aspects of their life they are most eager to regain.
If the patient wants to get back to work, cognitive testing can determine if there are any attention or other cognitive changes, before developing potential accommodations to request from an employer, Hosey says. If fatigue threatens to sabotage a return to employment, the psychologist can focus on what may be underlying that, as well as emphasizing other healthy habits, such as nutrition and sleep hygiene.
Keep in mind that patients may not be ready to share much at first, Hosey says. “What’s really clear is to follow the patient’s lead and readiness in talking about the traumatic symptoms of hospitalization,” she says.
For some patients it can be helpful to reconstruct a narrative of what they’ve been through, says Hardin. They can talk to family members who were updated by clinicians during their hospital stay, or even request their medical records to fill in the gaps in their memory, she says.
By constructing the arc of a personal narrative, the patient can recognize that they’ve moved beyond the most acute crisis and are improving, no matter how bumpy the road may seem at that moment, Hardin says. “Because otherwise you’re just left with this gap in your memory and then a whole bunch of physical deficits and cognitive deficits, and that can feel really, really demoralizing.”
Like others who have survived medical trauma, patients who survive COVID-19 should be equipped with tools to navigate the questions and curiosity of well-meaning loved ones and bystanders, Madathil says. The answer is not for survivors to self-isolate, she says.
But psychologists can help survivors think through what they are comfortable with sharing, and how to keep their “circle of contacts small and safe,” so as not to keep revisiting the trauma, Madathil says.
Part of creating those boundaries is to develop a script that discourages further delving, Madathil says. Such as, she suggests: “Yes, I had COVID. I’m recovered now and I’m doing what I need to do to move forward.”
“Give your clients permission,” she adds, “that they are not obliged to be ‘poster children,’ for the lack of a better term, for this pandemic.”
