For the first two weeks Theirrien “Tee” Clark was hospitalized with COVID-19, his wife saw him only on her phone because no visitors were allowed at Johns Hopkins Hospital.
Hopkins finally made an exception for the Elkridge family and allowed Marcy Myles-Clark inside, with full protective gear, when her husband’s condition became grave.
“I was really grateful,” said Myles-Clark, who had not even been allowed in the emergency room the day she took him to the hospital.
“There is an emotional impact when you’re really sick,” she said. “You need the reassurance. I think it’s why I was there. ... I could offer a hand, a kiss, a prayer.”
Myles-Clark says the one visit, during which her daughter and sister-in-law also got a turn at his bedside, may have made the difference. Her husband improved and was discharged after 46 days, including 28 on a ventilator.
Since coronavirus cases began mounting in March, more than 13,800 Marylanders have been hospitalized and more than 3,500 have died, many spending their last moments with health care workers rather than family.
Hospitals across the country made decisions unprecedented in modern times to ban family and friends. Risks were considered too high and stocks of protective gear too low to spare for visitors.
But with cases down from their highs and equipment better stocked, many have cracked open their doors — though just a little.
Hopkins allows end-of-life visits. But others, such as the 13-hospital University of Maryland Medical System, now permit one adult visitor a day for limited hours.
“We really have tried to balance the need to keep patients and staff safe with the benefits that families bring,” said Dr. Giora Netzer, vice president of patient experience at the flagship University of Maryland Medical Center. “We’re all in agreement about how vital families are. No decision was made lightly."
Before the pandemic, the university hospital system and others were moving to more liberal visitation. Studies have shown that visitors can serve as effective company and advocates for loved ones, lifting the patients’ moods and even their wellness, possibly lessening the length of stay.
More than 60,000 people are now hospitalized across the nation with COVID-19, matching peaks in April, according to the COVID Tracking Project. State data shows that after peaking in late April and early May at just over 1,700, hospitalizations in Maryland have bounced around 500 in recent weeks, slipping to 441 Saturday.
Hospitals have been tweaking policies as the pandemic eased in Maryland. Following federal guidance, most now allow a partner for a laboring mother, a parent of a hospitalized child and a caregiver for a disabled patient, a big concern for patients’ rights advocates early in the pandemic. Hospitals, however, encourage these visitors to stay in the hospital rather than come and go, sequestering along with the patient in his room or a nearby room.
Anna Palmisano, who heads Marylanders for Patients Rights, called the situation “unprecedented and complex,” as well as “terribly hard on patients and families.” But Palmisano, who is also a microbiologist, said she understands there is much asymptomatic spread of coronavirus.
“My hope is that hospitals can make appropriate exceptions to allow a support person to accompany patients most at need and to provide [personal protective equipment] to protect that person,” she said.
In addition to the Maryland university system, LifeBridge Health also is allowing one adult a day for admitted patients. MedStar Health is allowing end-of-life visits.
For COVID-19 patients, the visits bedside can be so brief it takes longer to suit up in protective equipment.
Myles-Clark said the day the hospital called her at 5 a.m., she arrived about 7 a.m. and waited outside for hours before being outfitted with protective gear. She finally saw her husband about 2 p.m. Combined, she and the two other immediate relatives were in the room for an hour and a half.
The rest of the family visits were virtual. Myles-Clark would call and talk to a nurse or doctor. After her husband was moved from intensive care to his own room, she would call him on his phone or chat through a video monitor provided by the hospital.
“I didn’t like it, but I understood they were trying to protect both sides,” she said. “I called several times a day, and they were always accessible.”
Still, it wasn’t the same as being there. Myles-Clark said she hopes all hospitals consider allowing a family member inside whether or not they believe the patient will die. Clark is now home continuing to recover.
Officials say they want to allow visitors but could clamp down further if cases surge or protective equipment dwindles, said Leslie Simmons, chief operating officer of LifeBridge Health, which includes the flagship Sinai Hospital in Baltimore.
“At the peak there were absolutely no visits, and it was tragic,” she said. “We couldn’t let people in at the end of life. We didn’t know anything about this illness, there was no playbook and we were really doing the best we could to protect everyone.”
Most visits remain virtual. Hospitals have bought iPads or invested in other systems that allow families to see patients.
There are some benefits, though it adds to the workload of nurses and other staff, officials said. Several family members in different locations can participate in a video conference, for example.
Some hospitals in the University of Maryland system also offer virtual service animal visits and spiritual services.
Some of the extra load falls to a team led by Allen Siegel, chaplain and director of spiritual care services for two hospitals in the system’s Upper Chesapeake Health.
He said end-of-life care is especially challenging when a loved one cannot be near. “There is lost intimacy when that person is not at bedside,” Siegel said. “We’ve had to adjust and find ways to communicate.”
He has, at times, used an iPhone tucked under his protective gear to broadcast a prayer service or last rites to family members gathered outside the hospital. He’s pasted pictures on the walls of patients’ rooms and played recorded family videos. From behind a mask, Siegel tries to convey warmth or concern with his eyes.
Dr. David Marcozzi, COVID-19 incident commander for the University of Maryland system, said the restrictions make hospital life harder for staff as well as patients and visitors, but will remain until a vaccine or effective treatments are widely available.
“Anyone in this knows it’s a long game,” Marcozzi said. “The policies may change again, but with this event it’s better to be right than be consistent.”
The hospitals follow statewide orders and guidance from federal authorities and national associations, but they are on their own to develop visitor policies.
Nancy Foster, the American Hospital Association’s vice president of quality and patient safety policy, said the policies are strict but needed.
“It is necessary for everyone’s sake that we restrict visitors, and it is painful for all concerned, including the staff who have to insist on it,” she said. “We do not take lightly the sacrifices we are asking individuals and their loved ones to make. We would not do so unless it was absolutely necessary.”
The safety of hospital workers is a big consideration. There have been at least 136,000 cases of COVID-19 among health care personnel and at least 630 deaths, according to the CDC.
Donna Ciufo, a nurse and a vice president at Hackensack Meridian Health in New Jersey, said no ones wants to keep out families. She co-authored a paper in 2011 that found flexible visitor policies were important to patient care. Families often weren’t getting enough information.
Banning families makes communication harder, she said. Nurses try to work with families in other ways, she said, as well as make sure “no one would die alone.”
“We know family and friends are important to patients, especially those facing the unknown of a COVID-19 diagnosis,” Ciufo said. “We needed to find a way to virtually keep patients’ loved ones informed and available for decision-making.”
Banning in-person visits runs counter to policies adopted by many hospitals to ensure so-called patient- and family-centered care.
Hopkins is among them, said Dr. Lisa Maragakis, senior director of infection prevention for the Johns Hopkins Health System. But she noted most hospitals aren’t even allowing some of their own employees inside.
She called bans “drastic,” but something the hospital had been prepared to do as part of a pandemic flu plan it developed.
“There are so many reasons why it’s beneficial to have families able to visit,” Maragakis said. “We’re watching the data very closely, and we’ll reconsider when it’s safe.”