GAINESVILLE, Fla. – It was the last place in the world Patricia Fountain wanted to be: a hospital’s COVID-19 unit.
The 80-year-old resident of a Starke nursing home had been rushed to University of Florida Health Shands Hospital after testing positive for the novel coronavirus in early April. Fountain had believed she had a mild bout of flu. No big deal, she thought.
Now at UF Health, Fountain cried, uncertain what God had in store for her. “I told Him, ‘If you’re going to take me, then take me. But don’t let me suffer too much,’” she said.
A hospital can be a scary place for patients. Being hospitalized in a pandemic can be absolutely terrifying. Patients are isolated in a room, unable to leave or have visitors. Medical personnel are dressed in bright-yellow gowns and sky-blue gloves. Formidable-looking masks cover mouths and noses below face shields, giving caregivers the vague appearance of industrial workers or otherworldly creatures.
“Imagine that you’re sick and confused and the people coming in to take care of you look like space aliens,” said Dr. Nila Radhakrishnan, chief of the UF College of Medicine’s division of hospital medicine.
Some patients with COVID-19, the disease caused by the coronavirus, are elderly and from nursing homes. Some have degenerative neurological conditions such as dementia or Alzheimer’s disease. This unnerving environment can threaten their already fragile mental well-being.
One of the major goals at a hospital, even in the best of times, is to prevent vulnerable patients from sliding into delirium, in which changes in the brain exacerbate mental confusion and emotional turmoil. This can worsen physical illness, lead to falls and slow healing.
But strategies for fighting delirium — such as encouraging interaction with staff and family — are no longer options during the COVID-19 crisis.
Fountain didn’t know it as she settled into her hospital room, but she would be one of the first patients to benefit from a new UF Health program to give back to patients some of what the coronavirus had stolen.
For Fountain, it started with an iPad on which she viewed the face of her daughter. Fountain smiled brightly as the two talked on a videoconferencing program.
In an instant, Fountain’s world brightened.
Another COVID-19 patient was in the throes of delirium. And her doctor felt utterly helpless.
UF Health geriatrician Dr. Mariam Mufti, an assistant professor in the UF College of Medicine’s department of aging and geriatric research, had been called to help with a dementia patient with a history of behavioral disturbances.
Unfortunately, some of the major tools to fight delirium were off the table for Mufti. Family visitors couldn’t comfort the woman. Anti-delirium medications couldn’t be restarted because of her COVID treatment. Volunteers who might normally sit with elderly patients to talk and keep them oriented were no longer allowed.
“It was a perfect storm of things COVID-19 made worse,” Mufti said. “The simple things can make a difference with delirium. But in this case, my options were limited due to the pandemic.”
The scene was being repeated with other physicians at the hospital. UF Health has the nation’s No. 33 ranked geriatrics program in the latest U.S. News & World Report survey of hospitals. But the COVID-19 problem was a new challenge.
Dr. Daniel “Ricky” Ortiz, an assistant professor in the division of hospital medicine, faced the same problems with several patients whose mental health was deteriorating in the early days of the pandemic.
“It was frustrating for everyone involved because the things we normally do — having the family at bedside, caregivers coming into the room a lot — you just couldn’t do for safety reasons,” Ortiz said.
What really frustrated Mufti was that many of these delirium patients didn’t have their own voice. Some couldn’t communicate. It was as if they were at the bottom of a well.
“These geriatric patients were almost suffering in silence,” she said.
Physicians and nurses around the nation were coming to use the phrase “perfect storm” often in the opening weeks of the pandemic.
It was as if the pandemic had been perfectly designed to thwart the efforts of medical professionals. Physicians recognized early in the pandemic that delirium was increasing in patients, the condition perhaps exacerbated by changes in the brain caused by COVID-19 itself.
“We were in a conundrum because one of the worst things you can do for someone who is at risk of delirium is to put them in a room by themselves,” said Radhakrishnan. “That makes their confusion much worse.”
It wasn’t that the care teams were ignoring these patients, she said. Far from it.
The doctors, nurses and other personnel in UF Health Shands COVID-19 units were giving their best to treat them. Caregivers, however, were working with multiple patients, and their time was limited. Each time they entered a room, they would have to don cumbersome personal protective equipment.
“The doctors and nurses and other staff members caring for these COVID-19 patients day after day, night after night, are angels,” said Radhakrishnan. “We all owe so much to them. And the baseline care they’re providing is outstanding. We couldn’t ask for more.”
But in a sense, patients at risk of delirium needed the kind of concierge care few had time to provide as they worked to save lives, Radhakrishnan said.
“Everyone is doing their best,” she said.
Delirium is one of those persistent hospital scourges, like infection, that caregivers do their utmost to keep at bay.
It isn’t confined to elderly patients, although they are the most susceptible, physicians say. Postsurgical patients and those with chronic illness are especially at risk, as are those with neurological disorders.
Delirium is a disturbance of mental abilities, leading to confused thinking, sleeping disorders and reduced awareness of one’s surroundings. It causes personality changes, fear and paranoia, depression and hallucinations, among a wide range of symptoms.
As COVID-19 took root in the United States, geriatricians quickly saw their world turn upside-down.
But what to do?
Ortiz reported his concerns to Radhakrishnan. Mufti sought out a mentor, Catherine Price, a neuropsychologist and associate professor in the UF College of Public Health and Health Professions' department of clinical and health psychology.
Price recommended that Mufti get in touch with Dr. Sharon Inouye, a professor of medicine at Harvard Medical School and a renowned expert on delirium. Inouye was hearing from others across the nation. COVID-19 had sparked a rise in delirium nationally that was turning into a conflagration.
“She just basically told us geriatric medicine had been put back 20 years because individuals who were coming into hospitals were not being treated for delirium prevention,” Price said. “All the known precautions and interventions were being thrown out the window.”
With input from Inouye, Radhakrishnan and her team adapted UF Health’s existing delirium prevention protocol to the restricted world of COVID-19. It focused on the human element.
As Inouye had told the Harvard Gazette in April, “We need to be aware of the damage of social isolation in older adults … as human beings, we need connection. It’s so important for our survival.”
So, at UF Health, it would start with re-establishing the human connection.
Radhakrishnan and her team led an effort that would have at its centerpiece nurses who would come to be called “delirium prevention champions.”
“Their job would be to interact with patients,” Radhakrishnan said. “They would provide that additional human touch that is so important to these patients in isolation.”
Two of the first people UF Health nursing leadership approached to help out were nurses Suzanne Maye and Jennifer Melara.
Up to that point, neither nurse had worked with COVID-19 patients. And both admitted they were nervous about the prospect.
“But these patients needed help,” Maye said.
Maye and Melara got to work.
The nurses rotated among the rooms of COVID-19 patients on Unit 75. These were patients who were sick with coronavirus infection, but they weren’t in critical condition, such as those patients in the intensive care unit who might be sedated and on ventilators.
At its most basic, the nurses' job is the one that came most naturally. Talk to the patients. Hear their stories, if they could communicate. Provide the human touch that could keep these patients grounded and oriented. Keep them from becoming divorced from their environment.
“We would just sit down with the patients and talk to them, not about their illness, but everything about their life — whatever they wanted to talk about,” Maye said.
At first, this anti-delirium program focused exclusively on patients over 65. But Radhakrishnan’s team saw that delirium threatened younger COVID-19 patients as well, so champion services were expanded to include them, too.
To be sure, Maye and Melara both wore full protective equipment. Their masks and gowns and gloves were the same as other medical personnel. But the patients became familiar with them because the champions visited every day, sometimes staying in a room more than an hour.
Maye talked horses with one patient with dementia, even if the patient forgot everything that was said within 10 minutes. She could see how the patient became animated at the discussion.
Maye managed to get a patient chocolate after discovering from family that the person had a sweet tooth.
“At 8 a.m., they would start meeting the patients with introductions,” said Radhakrishnan. “The nurses want to get in the room, open the blinds, start the day off fresh. Wake up the patient. Apply a structure to the day.”
The nurses would try to keep patients mobile within the confines of the room because they couldn’t walk around the unit.
In pre-COVID-19 days, someone came to a patient’s room to take meal orders off a menu. Now, that was being done by phone, and many of these patients could not effectively communicate their choices.
“Some of them don’t know how to answer the phone,” Melara said.
Maye and Melara talked to patients to see what they’d like to eat, or find out from family if communication was difficult.
The nurses might bring patients puzzles or art materials to keep minds engaged.
“They were able to provide cognitive stimulation to try to keep them focused on something else to stave off confusion,” said Radhakrishnan.
For patients at risk of delirium, contact with family is the crucial piece of the puzzle. Often, loved ones are the only people who can pierce the shell a patient has retreated into.
The delirium program had to get family into the room, if not physically, then electronically. Phone calls were fine. But these patients had to see family for the contact to be most effective, Radhakrishnan said.
Videoconferencing “is just so important,” said Mufti, who became a key member of Radhakrishnan’s team. “It helped to reorient patients. They just respond a little bit better to their families.”
The team used iPads to get patients back in touch with loved ones. The champion nurses assisted the patients, and at times even provided some training to family members unfamiliar with videoconferencing tools like Zoom or FaceTime.
The nurses said patients often responded immediately, as if a light switch had been turned on and their world suddenly illuminated.
“Some of the patients just wouldn’t interact with the nursing staff,” Melara said. “I had one patient who just wasn’t responding to me. He’d kind of give me one-word answers.”
Then, Melara connected the man to a granddaughter. “I was amazed,” she said. “He was speaking in full sentences with her. I didn’t know he was capable of that.”
The interaction also played a part in relieving the stress of family members worried about the health of their loved ones.
“These are husbands and wives who might under normal circumstances be sitting by the bedside the whole day,” Melara said.
Family members got to know the nurses through the daily contact. That often provided an important release to those at home worried about a patient in the hospital they might not have seen for weeks.
Wives and husbands and sons and daughters were often lonely, too, seeking an outlet for their fears.
Maye recalled the spouse of one patient with whom she talked almost daily. The spouse told her happy stories about the patient’s life.
It filled Maye with pride that she could help keep these families together, to be able to provide that vital bridge.
“It made me feel that my job was important,” she said.
Both nurses saw how that contact with family made a difference. The job made Melara realize her patients and their needs for human contact were no different than her own.
“They’re regular people with regular needs who want the same things that we want day to day,” Melara said.
Most important, the patients' mental health improved.
Other UF Health hospitals also have existing delirium prevention programs for patients, including UF Health Jacksonville, UF Health The Villages Hospital and UF Health Leesburg Hospital. At Leesburg and The Villages, for example, caregivers work to connect patients with family members via videoconference.
Radhakrishnan said UF Health is looking for opportunities to align COVID-19 delirium care across its multiple facilities.
Fountain, who came to UF Health Shands full of fear, turned a corner when she saw the face of her daughter, Gail Diggett.
Fountain, who is cognitively healthy, said Melara was “her doll. She’s so nice.”
Diggett said Melara had to walk her through how to set up the videoconferencing. But when she saw her mother, it was all worthwhile.
“God bless her heart, it was nice to see mama’s face,” Diggett said. “She became more relaxed and calm and was actually joking with me. Being able to see me just made her more confident about everything that was going on.”
Melara and others like her, she said, made all the difference.
“They’re heroes,” said Diggett. “That’s for sure.”
Radhakrishnan credited nurses with providing the kind of compassionate care that makes UF Health Shands Florida’s top-ranked hospital.
The program, Radhakrishnan said, “is just the perfect combination of science and compassion.”