Last spring, Liz Griswold began a new ritual when patients died. “I would get a printout of the electrocardiogram strip,” says Griswold, a palliative care social worker at MedStar Union Memorial Hospital in Baltimore. “I would stick [the EKG readout] in a test tube, tie a ribbon on it with a card that says ‘My heartbeat always reminds you of my love for you,’ and we would tuck that in the sympathy card that we send out anyway.”
During the first wave of the COVID-19 pandemic in March and April that locked down hospitals across the U.S., many people died without loved ones by their side. Families often weren’t given the chance to say face-to-face goodbyes. Griswold recognized the toll that this lack of physical contact and closure was having on those left behind and decided to offer the printed EKG readouts as a unique memorial.
Griswold would make sure to print a strong section of heartbeat — not one from the time of death, but one that could serve as a reminder of the life lived. For those on the receiving end, “it gave them something physical to hold on to,” she says. “For some people, they need the physical, they need the tactile.”
Although some projections estimate that the third spike in COVID-19 cases in the U.S. has passed its peak, hospitals nationwide remain overwhelmed. With each spike in the pandemic, hospitals have barred visitors in an attempt to minimize viral spread. When MedStar Union Memorial reinstated lockdowns this past November, Griswold says she and the rest of the palliative care team went back to printing and sending EKG readouts.
The role of palliative care is to provide comfort and relief, often at the end of life — both for the dying person and their loved ones. That work has become complicated by pandemic shutdowns and restrictions, but palliative care is far from the only hospital department affected by COVID-19 visitation limits. In the process of adapting to visitor restrictions, health care workers across units have learned that while technology can fill a few gaps, some difficulties don’t have simple workarounds, and that certain mental and physical effects, as well as technological advances, may ripple out far beyond the time when COVID-19 recedes into the background.
Health care workers and research indicate that visitors and support people in hospitals are important for multiple aspects of patient care, safety and wellness. Open visitation policies improve patient and family satisfaction, and may even boost patient health outcomes.
“All modern hospitals recognize the family’s role as part of the healing process,” says Dr. Peter Sloane, chief of pulmonary medicine and the COVID-19 surge director at MedStar’s Union Memorial and Good Samaritan Hospitals in Baltimore. He describes families as sources of emotional and physical support for patients, surrogate decision-makers when patients are too incapacitated to speak for themselves, and “another set of eyes and ears.”
More than 90% of patients’ family members surveyed reported supporting their relatives in some way, in a study evaluating the role of family caregivers in a hospital setting. About 80% reported sharing important information with hospital staff. Researchers also found that three-quarters of the almost 300 family members surveyed helped with basic care tasks like giving their relatives water, and about a quarter assisted with more complex caregiving like bathing and mobility support.
Further, when families were involved in inpatient discharge planning, 25% fewer patient readmissions occurred within a 90-day period, according to a 2017 study of older hospital patients.
Patients had fewer heart complications when family visit policies were more relaxed, according to a 2006 study of more than 200 patients. In the same study, the researchers found no relationship between patient infection risk and family visits. Similarly, a 2013 study of ICU burn patients found patient infection rates stayed the same with more family presence, while family and patient satisfaction scores increased.
But all of that prior research may not fully apply to the context of COVID-19. In March 2003, an outbreak of SARS in Ontario, Canada led all the province’s hospitals to suspend nonessential services and hospital visitation. “We suddenly realized that hospitals are actually, you know, they’re dangerous places,” says Jennifer Medves, a professor at the Queen’s University School of Nursing in Kingston, Ontario “And COVID’s reminded us.”
In a 2009 review, Medves and her colleagues found that more flexible visitor policies led to higher patient and visitor satisfaction. They also wrote, “No connection was found between liberal visiting hours and increased infection rates.” Medves is quick to point out, though, the 2009 work shouldn’t be used to shape COVID-19 policy. “This is a very different disease, because this is a community [acquired] disease, not a hospital-based disease,” she says. During the SARS outbreak, Medves says, visitor limits were meant to help contain the virus within hospitals.
This time around, policymakers, administrators and providers are more concerned with the outside getting in, according to Sloane, who agrees that some restrictions are necessary. “We were worried about visitors bringing COVID into our staff who are already under the gun trying to avoid catching it from the patients. It was just more transmission,” he says in describing the initial decision to stop all visitation during the first wave of the pandemic.
But in line with the evidence suggesting how important family presence can be for patient health, hospitals can and should plan more thoughtfully and flexibly when it comes to barring families, says Beverley Johnson, president and CEO of the Institute for Patient- and Family- Centered Care (IPFCC) — a nonprofit organization that advocates for increased patient and family involvement in medical care. She recommends hospitals make exceptions where possible and allow visitors for patients who need extra support or care, even under lockdown. Above all, she says it’s critical that hospitals communicate transparently about those exceptions and decisions with families.
Johnson points to the role that patient and family advisory councils can play in helping hospitals make strategic choices about restrictions while also incorporating the needs of families and patients. “I think it’s important to have the right people around the table to make these decisions,” she says. “You’re balancing short-term harm with long-term harm.”
Fewer than one-third of hospitals reported involving patient and family advisory councils in their COVID-19 policy planning, even though 68% of hospitals said that they have these groups, according to a joint IPFCC, University of Washington and University of California, San Francisco survey of hospitals between March and July of 2020.
“I don’t want to downplay how difficult it is right now for hospitals,” says Johnson. “They don’t have the financial resources, the staff are exhausted and stretched beyond capacity. But I think they still need to keep in mind that families shouldn’t be blamed, or they shouldn’t be locked out. [Families] can be part of the solution.”
Strict personal protective equipment regulations, negative pressure rooms and increased handwashing protocols have been implemented across hospitals — and seem effective at protecting staff and patients when followed, according to Sloane. But in the context of PPE shortages and community spread, it’s “hard for us to imagine that there truly is evidence” to do anything other than restrict hospital visitors, says Medves.
Dr. Ghazaleh Moayedi, an OB-GYN in Texas, agrees but believes that the necessity of hospital visitation restrictions could have been avoided. Rapid testing, more PPE, a true national mask mandate and coordinated contact tracing could all have slowed the virus spread and reduced the need for hospital visitation restrictions, Moayedi says. “We are lacking all of the public health measures that would solve this problem,” she adds. “It has created this false conflict between patients and health care providers, when actually all of us are suffering from mismanagement of this pandemic.”
Many of the health care workers interviewed said that it’s difficult to weigh the risk of excluding families against the risk of having more people present in the hospital during the pandemic, and there isn’t yet enough research assessing the exact costs and benefits during the current COVID-19 outbreak.
In lieu of in-person visits and without evidence to support alternative policies, health care workers are doing the best they can to include families in patient care. Phone and video calls have become commonplace substitutions for in-person visits. Many health care workers mentioned the advent of hospital-provided iPads and other technology to allow patients to at least see their families, if only through a screen. In almost all cases, setting up a video call on a hospital tablet, of which there are a limited number, requires the presence of a health care worker in a patient’s room.
In one case, however, the pandemic spurred the development of an entirely new technology: tablet-wielding robots. Dr. Meredith MacMartin, a palliative care doctor at Dartmouth-Hitchcock Medical Center, collaborated with engineers to create the easily maneuverable robot that allows patients to video chat with family members, without hospital staff having to set up each call. MacMartin says the robots reduce unnecessary staff presence in patient rooms, minimizing PPE usage, reducing infection risk to both patients and staff, and saving precious time.
MacMartin describes one patient’s video call with his relatives: “The family’s gathered around Zoom, and everybody’s leaning in and talking with him.” She adds that it was “really cool to see him able to respond. [Before] he was pretty confused. He was sleepy, but he lit up when he heard his family’s voices.”
Yet voice and video calls have limitations. Dolly Bindon, a hospital nurse in Denver, Colorado explains that getting families briefed on discharge instructions becomes complicated when they can’t be in the room to see the details of care.
Sloane agrees that technology isn’t a perfect substitute for in-person contact. “It’s one thing to have an intact patient having to substitute a face-to-face visit with a video chat,” he says. But with cognitively impaired patients, “The question is, it may be better than nothing, but is it that much better than nothing?” Often, he doesn’t think so. While cognitively impaired patients generally benefit from the physical presence of loved ones, Sloane says, the improvement is less apparent with video calls.
Although not an ideal replacement for all physical visits, video tools could remain a potential option for some beyond the pandemic. “I think video visits for people who are elderly and can’t get in to see their loved one or have health compromises themselves — I think that’s here to stay,” says Griswold. She envisions the long-term adoption of video calling as extending the mood-boosting power of familial support to more people.
Family visits don’t just improve patient mood though. They can also offer providers important patient context and insights. “I think decisions about [patient] care are a little bit better sometimes when family’s involved,” says Bindon.
Sloane says, “we’ll have a family member say, ‘Boy, that face is drooping, the mental status isn’t [normal],’ and we wouldn’t know because we don’t know the patient.” But noticing subtle changes in a person’s face, demeanor or body is challenging through a short video chat. Screens don’t show the full picture, are often positioned at odd angles, and call quality can vary. Each instance of a family member calling attention to a problem wouldn’t happen without visitors in the room, Sloan says, “unless by miracle, it’s picked up by some remote video.”
Zoë Wasserman, a nurse on a postpartum ward in Summit, New Jersey, works on one of the few units where a family member is allowed to be present, though there are still restrictions. Only one support person is allowed per patient for the entire labor and postpartum stay, which is critical, especially for new parents. “I’m teaching them to bathe the baby or take care of the baby. It’s really, for first-time parents… the only time they’ll have education,” says Wasserman.
One support person might not always be enough though, says Moayedi. “I cared for someone recently who was a recent migrant to this country, and her support person in the room also was not a fluent English speaker. And so the pastor from their church came to help facilitate some care navigation for them. Then there was conflict between the nurse and the patient because they’re only allowed to have one support person,” she adds. Moayedi’s example highlights that excluding family likely harms already marginalized communities the most.
Finally, hospital visitation restrictions are not the only way COVID-19 has prevented people from being with their loved ones. Griswold describes a recent non-COVID patient whose wife wanted to bring him home for end-of-life care. Before the pandemic, and with the help of hospice nurse home visits, “they could have done it,” she says. But the family had two children, one of whom has autism, and schools were closed. “She couldn’t manage teaching the eight-year-old autistic child and work and take care of her husband. She just couldn’t do all of it,” adds Griswold. The patient died in the hospital, without family.
COVID-19 has upended so many health care and social conventions, and the fall-out of visitor restrictions may not end with the pandemic. “I have some real concerns about what this is going to mean a year from now,” says Griswold. “The stress reaction, PTSD, emotional fragility, unresolved grief, all because [family] couldn’t be there.”