For Teresa Ciappa, home was other people — and for the people in her life, Teresa Ciappa was home. Teresa hemmed pants, crocheted booties, and decorated wedding cakes for anyone who asked, and many who didn’t. To her five grandchildren, whose teddy bears she lovingly patched up, the sunny Italian emigrant was “Dr. Nonni.” Among her family and friends, Teresa was the one who kept in touch, even from across an ocean, the one who never forgot a birthday or anniversary.
When she was hospitalized with Covid-19 in late 2020, Teresa’s tight-knit network watched her decline week after week through a virtual portal. “She would tell us, ‘I want to come home. I miss everybody,’” Michelle Ciappa, her only daughter, told STAT. “As soon as we hung up, we just fell apart.”
The Ciappas were only allowed at Teresa’s bedside on one occasion, for her last breath. Michelle, who is 45 and lives in Columbus, Ohio, said she wonders whether her mother would have survived Covid-19 if her many loved ones had been able to visit her. “She was alone in a room. That’s the opposite of who she was,” Michelle said. “Just to be there, to give her any comfort, maybe the outcome would’ve been different.”
Michelle may not be wrong about that.
A growing body of evidence supports the theory that bedside visitors offer not only comfort, but true clinical value. As experts on their loved ones, they can provide important details that may be missing from health records, and can clock subtle changes in behavior that may precede adverse medical complications. Visitors can calm agitated patients with a touch of the hand and reassure them with a word. They fluff pillows, fetch ice, clip fingernails, brush hair, and bring in favorite foods that might convince someone to eat for the first time in a long time.
And humanizing the ICU, it turns out, can actually help someone survive and recover fully from critical illness. Around the world, studies are showing that when visiting hours are longer and more flexible, ICU stays are shorter. Patients are less likely to suffer from delirium or anxiety. They have lower levels of stress-related hormones. Coronary patients had lower heart rates after bedside visits; patients with brain conditions showed a decrease in intracranial pressure during theirs. The studies have their limits, but taken together, the picture is clear: In almost every case, more and longer visits improves a patient’s health.
“There seems to be this feeling that family is nice-to-have, not essential,” said Daniela Lamas, a pulmonary and critical care physician at Brigham & Women’s Hospital in Boston. But when they’re not around, as has been the case during most of the pandemic, she said, “there is a real cost.”
The earliest intensive care units were no place for visitors. Clinicians for decades believed their patients were so fragile — and the measures used to save their organs from catastrophe so physically traumatic — that it was best for them to be deeply sedated and for visitors to be kept away or tolerated in small doses.
As a result, the ICU has not always been a dignified or compassionate place of care. As a group of critical care doctors put it in 2019, being a critical care patient is “to be on the brink of death, be unable to speak, be stripped naked, have strangers enter the room and simultaneously do things to their bodies without explanation, have tubes inserted into multiple orifices, have their arms restrained, hear a cacophony of disorienting bedside alarms whose meaning lies beyond them, and to be poked, and prodded—all while family is torn away.”
Even among hospitals that have utilized open visitation policies, most still restrict hours or the number, age, or type of visitors — policies that ultimately mean families without the money for child care, access to transportation, or work benefits like family leave or paid time off remain less able to visit hospitalized loved ones.
That’s despite a stream of evidence — which first emerged decades ago — showing true, clinical value from a loved one’s presence in the ICU. Open or flexible visitor access can help ease a patient’s fear, anxiety, delirium and agitation (which can in turn reduce their potential for long-term cognitive impairment, post-traumatic stress disorder, and functional disability once discharged). Actively engaging visitors in critical care is also associated with faster recovery and shorter ICU stays for patients. Studies even suggest family members can help clinicians catch medical errors or complications as they develop.
Terri Frantz, for example, raised a handful of red flags as she sat bedside with her husband, Jeff, while he was on a ventilator in the ICU last winter in Columbus. One day, she noticed that a familiar vein on his head was throbbing and suspected he had a fever and a sinus infection. He did. Another time, she thought he looked a shade paler than usual; when Jeff’s care team looked into it, they discovered one of his lungs was about to collapse. “Thank God I was there,” Frantz said.
Research also documents the benefits — lower rates of depression, PTSD and anxiety, mainly — for the visitors themselves. That leaves them more empowered and better equipped to handle the chronic conditions that most ICU survivors battle even after returning home. “The resilience that a person needs to endure and move through a critical illness — it’s not just nice-to-have, it’s key to the process,” said Rachel Sackrowitz, a critical care medicine doctor at the University of Pittsburgh Medical Center.
In 2017, a systematic review of this body of research found that 78% of studies on patient- and family-centered care interventions in the ICU led to one or more positive outcomes.
Scientific evidence has also shown the opposite is also true: Isolation can make people sicker. Social solitude and loneliness in older adults has been tied to increased risk of heart disease and stroke, dementia, high cholesterol, diabetes, and substance use. Studies suggest people who are less socially active are more likely to develop symptoms — and to report more severe and persistent symptoms — after being exposed to a cold virus, and that their immune systems respond to stress with damaging inflammation. Research on solitary confinement in prisons and detention centers has shown forced isolation and deprivation impacts brain activity and exacerbates physical ailments ranging from rashes and skin fungi to musculoskeletal pain from physical injuries and arthritis.
Based on both anecdotal evidence and that peer-reviewed research on the clinical impacts of isolation and companionship, pockets of progressive hospitals began to welcome visitors not just into the ICU, but into the caregiving fold — cracking open or even flinging wide their doors to eager loved ones.
Then, Covid-19 slammed them shut again.
As early Covid-19 surges locked entire hospitals down, outsiders were locked out, and once-bustling ICUs drained of comers and goers.
“It was very jarring, just kind of eerily quiet,” said Mollie Kettle, a critical care nurse at Duke University Hospital. “Everything about how we provided care was different,” said Thomas Valley, a pulmonary critical care doctor at the University of Michigan.
Carol Billian, 64, who was hospitalized for two separate surgeries during 2020, noticed the difference immediately. In 2018, Billian, who’s from Baltimore, had her 92-year-old mother by her side every day during a four-month-long hospital stay for a ruptured colon. “Just seeing her, I felt safe. She was like a lifeline to me,” she said.
During the pandemic, though, “I felt abandoned,” she said. “You know you want to get better, but you don’t have the same motivation because nobody’s there.”
Virtual visits through phones and tablets became the norm in many ICUs. But for patients who didn’t speak English as a first language, or whose family members didn’t have reliable home connections or internet-enabled devices — a digital divide that disproportionately affects people of color — the bedside losses were enormous. One study examining 69 ICUs worldwide during early 2020 found a doubling of acute brain problems (coma and delirium) in severe coronavirus patients; the researchers connected the finding to the mental trauma of isolation and lack of family presence.
Another study of about 6,300 adults hospitalized between in 2019 and 2020 in Kyoto, Japan, found the incidence of delirium was significantly higher after visitation restrictions were put into place. “To completely isolate them, with nothing familiar — they have no idea who we are, they have no idea why they’re there, many times,” said Gavin Harris, an assistant professor in the divisions of infectious diseases and critical care medicine at Emory University. “It’s this constant state of terror. In some sense it’s sort of like solitary confinement.”
Experts told STAT it would be nearly impossible to directly demonstrate the physiological effects of ICU visitor restrictions, since controlling for all variables except visitation is difficult in a patient population whose health is so precarious and complex — and since randomizing visitation between patients could be unethical in the first place.
Still, ICU specialists told STAT, the difference was undeniable. As two leading critical care doctors opined in the Washington Post last August, “Keeping loved ones from visiting our coronavirus patients is making them sicker.”
For some clinicians, witnessing deeply ill patients suffer through extreme isolation during the pandemic is evidence enough of the clinical value of companionship in critical illness. “When you’ve lived without it, you recognize how much that connection matters,” Sackrowitz said. “It’s just more evident in ways that it hadn’t been before.”
For the doctors, clinicians — and even patients — who have seen the power of a bedside visit, the next step is clear: It is time to get loved ones back into the ICU.
Michelle Ciappa, whose mother, Teresa, passed away after about seven weeks in isolation, still wonders — why couldn’t she or someone else have quarantined, been tested, and allowed to come in to try to save Teresa, if not from Covid-19, then from the perils of isolation? “I feel like a lot of people lost their lives because of it,” she said.
Before the pandemic, at least, certain hospitals had indeed begun to open up visiting hours, allowing loved ones to come whenever they could and stay as long as they liked. Others began letting families sit in on rounds, provide direct caregiving like feeding and bathing, and be present during resuscitative efforts.
But now, doctors and researchers who share Ciappa’s hope are worried about how much progress the movement lost during the last year and a half. “It took time to get those family-centered policies into the fabric of hospitals,” said Traci Snedden, a career critical care nurse and assistant professor of nursing at the University of Wisconsin-Madison. “Will Covid give clinicians permission to pull back again, or will it propel us forward like, ‘I can’t believe we went without family at the bedside’?”
So far, there is reason for pessimism. While businesses across the U.S. have dropped mask mandates and social distancing policies, hospitals have largely kept restrictions in place (for a number of reasons, among them concerns about stagnant vaccination rates, the spread of the more infectious Delta variant, and rising case numbers, hospitalizations, and deaths in the U.S.). Expanding visitor access beyond pre-pandemic limits feels like a tall order, some say.
“Maybe I’m a skeptic, but I’m worried that we’re going to go back to the same policies as before,” Valley said. “Have we learned enough from Covid?”
Akin Demehin, director of policy at the American Hospital Association, said that while many hospitals are “embracing the role of caregiver or the loved one as being really instrumental to the patient’s recovery,” decisions about whether and how to adopt outside support will range from hospital to hospital. “It’s still an area of innovation,” he said.
And while many health care workers witnessed the brutal impacts of isolation on patients during the pandemic, many experts told STAT they believe it will take more than the strongest of anecdotes to swing ICU doors wide open. For some clinicians, only more rigorous research demonstrating the physiological benefits of open visitor policies will persuade them.
“There’s more appreciation, but I’m not so convinced things will change,” said Michael Goldfarb, a cardiac intensivist at McGill University in Montreal. “There is still a very large gap that needs to be bridged with future studies.”
After all, what existing research we have is couched in limitations.
Many suffer from small sample sizes, like the 1987 study that found a decrease in intracranial pressure during family visits in a patient population of 24. In 2020, one of the few randomized trials of flexible ICU visitation (which concluded blood pressure and heart rates were more stable after visits) only examined 60 patients at four Iranian ICUs. The largest randomized trial assessing the impacts of flexible visitation — conducted on 1,685 ICU patients in Brazil in 2018 — found a lower incidence of delirium, but not a statistically significant decrease.
In 2017, Goldfarb led a meta-analysis of existing research (at the time, 46 studies of which only 11 were randomized trials). While most of these studies documented some benefits, those improved outcomes were often related to mental health or family satisfaction — and not “harder” metrics linked to mortality, heart attacks, strokes, or kidney failure. In other words, what evidence we have of benefit relates to “things that don’t sway clinicians as much,” Goldfarb said.
So, the core question remains: To what extent can science capture and quantify the somewhat immeasurable impact of presence at the bedside — and what’s lost when there’s no one there?
“It’s impossible to say a patient died of loneliness,” Goldfarb said, “though it’s very likely the case that people gave up hope much faster because of a loss of connection.”
Michelle Ciappa said she believes that fact alone should persuade ICUs to welcome loved ones back into the fold. “I’d hope they can figure out a way for someone to always be there,” she said.